Skip to main content

Gynaecology Cancer Leaflets

Each of the Gynaecology Cancer leaflets are detailed below, select the heading of the one you would like to view and the content will expand with an option for you to download the PDF version.

Leaflets can be made available in difference formats on request, to view in a different language select the language change in the bottom left of the screen.

We would really like some feedback on our e-leaflets. If you could take a couple of minutes to complete our short feedback form by clicking here that would be much appreciated.

If you would like to make any suggestions or comments about the content of this leaflet, then please contact the Patient Experience Team on 0151 702 4353 or by email at Pals@lwh.nhs.uk.

Changing language options online using Google Translate

Please note that Google Translate is the tool that is used to translate information on our website to other languages. Google Translate is a global tool that is not under Liverpool Women’s control. Therefore whilst you may use Google Translate for useful simple translations, it should not be relied upon as a substitute for official translation services that are provided by the Trust. Please take particular notice of this when you are using the translation feature for patient information that contains detailed clinical information. Speak to a member of staff when you visit the Trust if you require any translation support.

  • Your Questions Answered - Introducing you to your Keyworker / Clinical Nurse Specialist for Gynaecological Cancer

    The leaflet is detailed below, or you can download the 'Your Questions Answered - Introducing you to your Keyworker / Clinical Nurse Specialist for Gynaecological Cancer' leaflet in PDF.

    What Is a Keyworker Clinical Nurse Specialist (CNS’)?

    Your keyworker is the person who helps to co-ordinate your care throughout your illness and recovery. At Liverpool Women's NHS Foundation Trust this is a Clinical Nurse Specialist (CNS).

    The CNS’ you may be linked to are fully trained nurses who now specialise in the area of Gynaecological Oncology and the associated issues related to Women’s Health. Some CNS’ are also known as Macmillan Nurses and are closely associated with the national organisation MacMillan Cancer Support.

    This organisation is devoted to helping patients and their families cope with the diagnosis, treatment and effects of cancer. At the Liverpool Women's NHS Foundation Trust the role of this CNS includes support for the patient / family when a cancer is suspected but not confirmed.

    Our specialist skills can also help when there is not a cancer.

    How Can Your Keyworker (CNS) Help You?

    They can help meet your needs by:

    • Providing you with information about cancer, treatment and support
    • Access to local and national organisations for further information and support
    • Ensuring you can access information to your local support groups as well as a specific gynaecological support group such as EVOC
    • Supporting you with issues or concerns regarding re-adjustment following treatment ie: altered body image / sexual health, anxiety or emotional concerns, physical symptoms
    • Pointing you in the right direction for financial or family issues
    • Liaising with other health care professionals in the hospital or in the community ie: lymphoedema nurse, dietician, district nurse, outreach teams and hospice organisations who may also be able to help you.

    Will I Have To See A Keyworker CNS?

    No – All patients and their families are given information about the CNS service and this is why we have produced this leaflet. We hope very much that you will feel that you would like us to be involved in your care.

    If I Want To See A CNS How Can I Be Referred?

    You can be referred to us by any of the following people and at any time:

    • The nurses or doctors in the Outpatient Department or on the ward
    • Pre-Operative clinic
    • Your GP
    • The Community Care Team

    You or any member of your family can make a self-referral by phoning the number in the “Our Contact Details” section of this leaflet. If you have met your Keyworker (CNS) in a different hospital they will liaise with our team to ensure that you have shared care at each step of your pathway of care.

    Will The Hospital CNS Visit Me At Home?

    No – We work very closely with the Community nurses who work in your local are and we will refer you to their care. This means that all your needs will be met by the team closest to your home. This will only be done with your consent and only if you wish it.

    Is Confidentiality Maintained?

    Yes – Confidentiality is maintained at all times. We recognise that each patient and their family will have their own personal needs and that these will be different from one person to another. All your contacts with us will be treated with the strictest confidentiality and will only be discussed with another member of the team if you agree.

    What If I Have A Problem Out Of Hours?

    A non-urgent message may be left on the answerphone. If you are concerned about pain or symptoms, please contact your GP or district nurse. If you have been in the ward recently, please contact the ward.

    Our Contact Details

    The telephone number for our team is 0151 702 4186.

    Other Useful Contact Information

    MacMillan Cancer Support

    89 Albert Embankment

    London SE1 7UQ

    Cancerline: 0808 8080000

    Mon-Fri 9am-8pm

    Website: www.MacMillan.org.uk

    Details: The Macmillan Cancerline Team is there to listen to your concerns and put you in touch with the right support for you – whether it’s Macmillan services, another organisation offering information and guidance, or your local cancer self help and support group or one-to-one support. Our database gives you access to support and practical help in your area. Many people affected by cancer find it helpful to talk to someone who has gone through the same thing.

    Wherever possible they will help you to talk to someone with experience similar to yours – someone with the “inside knowledge” you need.

    Women’s Health Information and Support Centre Limited (WHISC)

    120 Bold Street

    Liverpool,

    L1 4JA.

    Tel: Margie Hughes on 0151 707 1826

    Website: www.whisc.org.uk

    Details: A chance to talk about women’s health and related issues in a friendly, information atmosphere.

    Cheshire and Merseyside Clinical Network

    Website: www.cmcns.nhs.uk

    Details: Contains valuable information on local and national support groups and information booklets.

  • Taking Opioids to Manage Pain in Palliative Care

    The leaflet is detailed below, or you can download the 'Taking Opioids to Manage Pain in Palliative Care' leaflet in PDF.

    Introduction

    The doctors and nurses looking after you have recommended that you try opioids (morphine – type medication) to help to relieve your pain. This information leaflet may help answer some questions you may have regarding the medication prescribed to you.

    People living with serious illness (such as cancer, heart disease, kidney disease and lung disease) may experience pain as part of their illness. There are many different types and strengths of painkillers suitable for different types of pain e.g. paracetamol, codeine.

    Sometimes strong pain-relieving medication is required and, in this situation, strong opioids such as morphine or morphine type medicines (e.g. oxycodone, fentanyl, diamorphine, and buprenorphine) may be recommended.

    Common Concerns or Worries about Using Strong Opioids

    • Some people worry that they may become addicted to or dependent on strong opioids. However, when strong opioids, prescribed for pain, are monitored correctly this is unlikely to happen
    • Others worry about the potential harmful side effects. The team looking after you will monitor you carefully for any side effects
    • Occasionally people think that they are coming to the end of their life if strong opioids are being prescribed. Strong opioids may be prescribed at any stage of someone’s illness if they have pain or other symptoms such as breathlessness which are severe enough to require them.

    Starting Treatment with Strong Opioids

    There are many types of strong opioids that can be given in different ways. The first opioid you should be offered is morphine. Morphine can be taken by mouth in the form of tablets, capsules, liquids, or powder. You will be offered one of the two types of morphine:

    • Immediate Release: A short acting type that you may need to take several times a day (this begins to work after about 30 minutes and lasts for 4 hours)
    • Sustained / Modified Release: a slow-release type that is taken less frequently (usually releases slowly over 12 hours)

    If you are taking sustained release morphine you should also be offered a supply of immediate release morphine which you can take as needed to help you manage any breakthrough pain.

    There is no standard dose of strong opioids the amount needed to control pain varies between individuals. Over the first few days the amount of morphine you are taking will be monitored and adjusted to find the lowest dose that controls your pain with the fewest side effects.

    Managing Pain with Strong Opioids

    Your pain will be different from other people’s pain, even if you have the same type of illness. When you feel pain, and how much pain you feel will vary from day to day and from hour to hour.

    Often how ‘bad’ a pain is depends on many different factors, for example how tired you are, how active you have been the day before, and whether you are bored or enjoying what you are doing. This means that the same dose of medicine each day may not ‘match’ your pain fully.

    When you start taking strong opioids you should be offered regular reviews of your pain control and any side effects. This should happen throughout your treatment but is particularly important at the beginning when your dose may need to be adjusted.

    Pain Relief Is Usually Given For Two Main Types Of Pain:

    • Background Pain: This is pain, which is present nearly all the time, at a predictable level. It is treated with a regular long-acting strong opioid at a set dose.
    • Breakthrough Pain: This is when your pain levels suddenly increase. For these occasions you will be prescribed a short acting ‘immediate release’ opioid which will add to your ‘background’ dose for a few hours to cover the extra pain you are experiencing.

    Take only the amount of breakthrough medication prescribed for you. If you need more than three breakthrough doses a day, you must contact your healthcare professional who may need to adjust your regular long-acting medicine.

    Managing Side Effects

    All medicines may cause side effects, and these can vary from person to person:

    • Constipation (when stools become painful or difficult to pass or are less frequent): This is the most common side effect as opioids slow down the movements of the gut. You will be given laxatives to relieve any constipation. Laxatives work by making the stool looser or by stimulating the bowel to move. They do not work immediately; it is important to continue to take them on a regular basis.
    • Nausea (Feeling Sick): Usually occurs when starting opioids and wears off after a few days. You may be given anti-sickness medication to help with this.
    • Drowsiness: Some people experience drowsiness or problems with concentration when starting strong opioids or when the dose is increased. This may affect your ability to carry out certain manual tasks such as driving. If you experience drowsiness that is severe or to long-lasting you should report this to the person who prescribed your medication

    Someone who has taken too much strong opioid may become drowsy, unable to stay awake and may develop twitching or jerking movements or feel muddled. If this happens the medications should be discussed with a health care professional as soon as possible, with your GP in normal working hours or the emergency / out of hours service.

    Driving With Strong Opioids

    When you first start taking strong painkillers, they can sometimes make you feel tired and drowsy. You may not be able to concentrate, and your reactions may be slow. If this happens, you should not drive or operate machinery.

    Don’t

    • Drive for the first 5 days after you first start taking strong painkillers
    • Drive for the first 5 days if the dose has been increased
    • If drowsy you should not operate machinery

    Do

    •  Keep your first drive short
    • Take a driver with you in case you feel drowsy while you’re out
    • Ask your doctor for advice if you’re worried whether you’re safe to drive
    • It is a good idea to carry a copy of your prescription and the packaging the painkillers come in

    It is an offence to drive with certain drugs above certain limits in your body. This includes some prescription medicines. However, most people taking strong painkillers will not be breaking the law as long as:

    • The painkillers are not affecting your ability to drive safely
    • The painkillers have been prescribed to treat a medical problem
    • You have followed the instructions you were given by the prescriber or the information that came with the painkillers

    The police can stop drivers and use tests to check whether they have taken any drugs. This may include a blood or urine test at the police station. So, it’s a good idea to carry a copy of your prescription and the packaging the painkillers come in.

    Remember, you aren’t breaking the law as long as you have taken the painkillers as they have been prescribed and are driving safely. If you are not sure if you’re able to drive, you should not drive and speak to your doctor, specialist nurse or pharmacist for advice.

    What If I Can’t Swallow My Tablets

    If you cannot take your strong opioids by mouth and your pain is fairly stable, you may be offered an opioid patch that sticks to the skin and releases the medication through the skin. These are changed every few days or once a week depending upon the type of patch used. If your pain is unstable or fluctuating, subcutaneous injections (injecting into the skin) may be considered.

    What If I Miss A Dose Of Medications?

    Do not take an extra dose of your long-acting strong opioid. Use your ‘breakthrough’ medicine as necessary to manage your pain until the next dose of your long-acting medicine is due. (If you are using opioid patches which last several days you should discuss what to do with the healthcare professional responsible for your care).

    Alcohol and Strong Opioids

    The effect of drinking alcohol i.e., sleepiness and poor concentration, will add to any side effects experienced from your strong opioids. You should avoid alcohol when you first start taking opioids or when there has been an increase in opioids. If you are taking strong opioids, you should avoid alcohol if you are going to drive or use tools or machines. Once established on a steady dose you should be able to drink alcohol in moderation without getting any extra side effects.

    Taking Other Medications with Strong Opioids

    The doctor or nurse prescribing your strong opioids will check what other medicines you are taking. Most people can take strong opioids alongside their other medicines without any problems. If there are potential interactions your health care professional will advise you.

    Storage

    Store medications in the containers in which they are given to you. Store them in a cool, safe place out of sight of children and vulnerable adults. Any medicine that you do not use should be returned to the pharmacy for safe disposal.

    Follow Up and Future Prescription

    Details of the medicine you have been prescribed will be shared between your hospital teams, your GP and community teams. If you are an inpatient your hospital team will renew your medicines and change prescriptions as needed. When you are at home, the GP is responsible for your prescriptions and will renew them, alongside other health care professionals involved in your care on a regular basis.

    Who to Contact

    If you have any further questions relating to strong opioids or if you are having problems controlling your pain, you should contact the person responsible for your care. For example, your GP, hospital doctor or palliative care nurse specialist.

    Useful Contact Details

    Clinical Nurse Specialists In Gynae-Oncology & Palliative Care Team

    Phone: 0151 702 4186.

     

  • Patient Syringe Driver

    The leaflet is detailed below, or you can download the 'Patient Syringe Driver' leaflet in PDF.

    What Is A Syringe Pump?

    A syringe pump is a small portable battery-operated device. The device is attached to a syringe, which gives you medication continuously (over 24 hours) through a small needle under the skin. The syringe pump is small enough to be carried in a pouch/bag, a shoulder holster or large pocket.

    Image Source: http://www.northlondonhospice.org

    Why Do I Need One?

    Sometimes it is easier for you to have some of your medications this way. There are several reasons why you might have a syringe pump:

    • If you are finding it difficult to swallow medication
    • If you are feeling sick and/or vomiting frequently and you are unable to keep tablets in the stomach long enough for them to work
    • If you are struggling with the number of tablets that you need to take
    • If your symptoms are difficult to control with tablets alone

    Instead of having repeated injections the syringe pump can provide a simpler more comfortable way to receive medication continuously. Starting a syringe pump doesn’t mean that your medications have stopped working or aren’t strong enough, only that this is a more effective way of getting the medications in to the body.

    Syringe pumps can be used across all care settings e.g. hospital, hospice and at home and can be used at any point during your illness.

    Using a Syringe Pump

    The syringe is attached to a thin piece of tubing that has a fine needle attached to the end. The nurse will insert the needle just under the skin on your chest, tummy, upper arm or leg and will secure it in place with a clear dressing. Once the needle is in place it can stay in place for a number of days. The nurses looking after you will refill the syringe in syringe pump every day. If you are at home, the district nurses will attend your home to do this. At the same time the nurses will:

    • Check the pump is working properly
    • Check the needle site
    • Review your symptoms
    • Replace the needle every few days

    How Long Will I Need The Syringe Pump For?

    You may only need it for a couple of days / weeks. Your symptoms and the need for a syringe pump will be reviewed on a regular basis.

    Some Do’s And Don’ts

    Do

    • Tell the nurse if your skin is red or sore where the needle is in place
    • Tell the nurse if the needle comes out, the alarm is sounding or if you have any concerns regarding the syringe driver medication
    • Keep all medication in a safe place away from children preferably in a locked cupboard
    • Keep the syringe contents out of direct sunlight

    Don’t

    • Immerse the syringe pump in water. You can have a bath or shower but keep the needle site dry and keep the machine out of water by placing on a nearby stool/table. Your nurse can give you advice on this
    • Do not attempt to change the settings on the syringe pump or press the buttons
    • Do not drop the syringe pump
    • Do not place the syringe pump at a higher level than the needle/tubing

    In the event of any of these happening please contact the nurse in charge of your care / district nurses

    How Will I Know The Syringe Pump Is Working?

    The nurse will check the syringe pump every 4 hours in the hospital setting and at least daily in community to ensure it is working. A small light above the ON/OFF button will flash green regularly. If it turns red you should inform the nurse in charge of your care / district nurses as soon as possible. There is an alarm on the syringe that will beep if there is a problem. The alarm usually beeps for two reasons:

    Blockage of flow of medication caused by a kink in the tubing

    The syringe is empty. If the alarm sounds, contact the nurse in charge / district nurses.

    If you have any queries or concerns, please discuss with your ward team / Gynae oncology Nurse Specialist 

    If you are in the community, please contact District Nurse / Macmillan Nurse team for further advice and support

     

     

     

     

  • Radical Hysterectomy

    The leaflet is detailed below, or you can download the 'Radical Hysterectomy' leaflet in PDF.

    Radical Hysterectomy

    This leaflet has been written and produced for you, your partner and family to assist and support you, if you are considering or have been recommended to have this surgery. It is not intended to replace verbal information with your surgeon and specialist nurse. You can access other information via websites available – see end of leaflet.

    Benefits and Reasons for having a Radical Hysterectomy

    The aim of this surgery is to give the best possible outcome of your treatment management. You may want to know whether your treatment will work or whether you can stay well without treatment.

    Your doctor will have explained that you have an early-stage cancer of the cervix. See leaflet ‘Cancer of the Cervix’.

    Your partner and carer may also have concerns and questions about how they can help you, and how your condition and treatment will affect them.

    Try to find out as much as you can about your treatment options and make a list of questions you may want to ask your doctor.  (See information resources at back of leaflet).

    Treatment Options & Choices

    Your consultant with discuss with you the treatment options, and you may find the leaflet regarding understanding cancer of the cervix helpful.

    What is a Radical Hysterectomy?

    Hysterectomy is surgery to remove the Uterus (womb).

    A radical hysterectomy means also removing a small part of the top of the vagina, some of the tissue either side of the neck of the womb, and lymph nodes. The operation takes 2 ½ - 3 ½ hours. Inpatient stay is approximately 3-4 days.

    Your consultant will discuss with you whether to remove your ovaries or not. The incision (cut) in your abdomen (tummy) may be vertical (up & down) or transverse (across). Your consultant will discuss with you which is the most appropriate way in your circumstances.

    What Happens Before the Operation?

    You will attend Pre-operative Clinic the same day as Outpatients or shortly before the operation. During this visit the staff will discuss the type of operation you will be having and what to expect before and after.  You will have the opportunity to ask any questions that you may have.

    The pre-operative team will ask you to complete a health questionnaire and share with you written and verbal information about the Enhanced Recovery programme. It would also be helpful if you would make a list of all the medicines and drugs you are currently taking.  A few tests may be performed such as blood pressure, urine test, blood tests and sometimes a chest x-ray or heart tracing.  You may need to see an anaesthetist for assessment before your operation.  The pre op staff will discuss with you blood thinning injections when you go home after your operation; there is a risk of blood clots after any surgery (and particularly after surgery for cancer), and the injections (for up to 4 weeks after the operation) will minimise this risk. 

    If you have any special requirements (physical/practical) for your admission such as a special diet or religious/cultural needs, please let the staff know during your visit so that all necessary arrangements can be made.

    By attending the pre-operative clinic your future care can be jointly planned according to your individual needs, and all necessary steps taken to make your stay as comfortable as possible.  If you feel you may need help following surgery, please discuss this with your GP or the nurse at the pre-operative clinic.

    In Hospital – Before Your Operation

    You will be admitted to the hospital on the day of your operation or the day before.  As soon as you know you need an operation, try and get yourself into the best possible physical shape so that you can recover more quickly.

    We would advise that you:

    Stop smoking, eat a healthy diet and if able, take regular exercise.  If possible, make plans with your family for while you are in hospital and arrange for some extra help for your first couple of weeks at home. 

    You will be admitted to the gynaecology admissions lounge where you will meet the gynaecology nursing team. The nurse will introduce herself and show you the ward layout. 

    Before you go into the operating theatre you will not be allowed to eat or drink for several hours before your operation.  If you are in hospital the night before you will be asked to shower the morning of the operation, if coming in on the day please do this prior to admission.

    There is usually an opportunity to meet the anaesthetist prior to surgery to discuss any concerns.

    You may be given support stockings to wear during and after your surgery and you will also be prescribed an injection to reduce the risk of blood clots in the post-operative period.  This is given as prescribed by the doctor.  A member of the ward team will escort you to theatre and they will complete a checklist prior to you leaving the ward.  The nurse will stay with you until the theatre reception staff takes over. 

    On arrival in theatre, you will meet the anaesthetist who will put you to sleep with an injection given via a small needle in the back of the hand.  You will wake up in the recovery room after your surgery. Here you will remain for a short while for observation, before being brought back to your bed on the ward.

    After Your Operation

    You may feel some discomfort when you wake, and you will be given painkillers as required (see leaflet).  You will have a drip in your arm and a catheter or small tube to drain urine from your bladder.

    A Consultant will see you the day after surgery to review you and explain how the operation went and will advise you about resuming diet and fluids, they will also encourage you to get out of bed and slowly mobilise.  This helps to prevent developing blood clots.

    A slight discharge or some bleeding from the vagina is normal but if this becomes heavy you should tell your nurse straight away. You may get griping wind pains caused by bowel and stomach gas, which is normal, there are medicines which can help with this if required. You will be given a laxative to avoid constipation.

    Your stitches are usually dissolvable so do not need removing. Occasionally the surgeons will use clips, and these will be removed by the district nurse or treatment room nurse and you will be informed when this will happen.

    In some circumstances you may be discharged home with a catheter, this is to allow the bladder to recover following surgery.  Before discharge, the ward staff will show you how to manage this when home, a plan will be made for you to return to the ward to have it removed.

    Once home you will receive an enhanced recovery phone call from your Clinical Nurse Specialist to assess your progress.

    Any tissue taken at the time of your operation will be sent for examination, this usually takes 4 -5 weeks and you will be informed of the results by your consultant via a face to face clinic appointment or telephone call.  Following investigation, all tissue will be disposed of in accordance with health and safety. You may be asked if a fragment of any tissue removed to be kept as part of our ongoing commitment to research for future treatments into cancer. This would only be done with your consent.

    Possible Complications

    Although we try to make sure that any problems are kept to a minimum, no surgical operation can be guaranteed free of complications. The operation itself or the general anaesthetic may occasionally give rise to difficulties, which will make your stay in hospital longer or your recovery slower.

    The risk of developing complications after surgery is increased in some patients.  If you smoke, you are more at risk of a chest infection.  If you are overweight or have diabetes you are more at risk of developing wound infection.

    Frequency and Pain on Passing Urine

    Occasionally, after a hysterectomy you may feel the need to pass urine more frequently.  This is a result of slight bruising and swelling of the bladder.  Pain relief such as paracetamol is recommended.  It is also beneficial to exclude a urine infection if this persists.

    Retention of Urine

    We usually leave the catheter in the bladder for 5-7 days after the operation as there is an increased risk of retention after a radical hysterectomy than compared to a standard hysterectomy. We would usually aim to send you home with the catheter in place with a small leg bag under your trousers, with a plan to return for a Trial without Catheter (TWOC) a few days later. When you return and your catheter has been removed, you will have an ultrasound scan.  This will look at whether you are emptying your bladder completely.  It is important not to retain urine in your bladder, as it will become infected.  If the scan shows you are retaining urine a catheter will be put back in and left for 1-2 weeks.  This will allow your bladder time to go back to normal.  Should you still be not emptying completely we will show you how to pass a small temporary catheter yourself.  Again, this is only usually needed for a short period of time.

    ‘Wind Pain’ / Delayed Bowel Function

    The operation can affect your bowel function and cause increased wind pain.  This can cause pain in the abdomen, shoulder and back.  Eating small quantities, especially of fruit and vegetables, and drinking plenty of fluid will help to re-establish your normal bowel movements. Painkillers and moving about will also ease the discomfort.

    Occasionally the bowel can become sluggish and sometimes stop functioning as normal.  This is known as an ileus.  This can cause abdominal pain and distension, vomiting and constipation.  If this happens you will have intravenous fluids (a drip) and not be allowed to eat until your symptoms settle, usually this takes a couple of days.

    Constipation

    It usually takes time for your bowels to return to their normal pattern; you will be offered laxatives to take after the operation to minimise any potential problems with bowel function.

    Vaginal Bleeding / Discharge

    Some women have a small bloodstained vaginal discharge after the operation.

    Occasionally you can bleed quite heavily.  This may be a sign that the wound inside your vagina is not healing, or that there is infection or a blood collection developing.  If you are concerned about your bleeding, please tell the nurse looking after you and she will assess if it is normal.

    If this becomes a heavy loss or an unpleasant smelling discharge when you go home, you are advised to contact your GP or the gynaecology ward.

    Lymphoedema

    Lymphoedema is swelling due to excess accumulation of fluid in the tissue. There is a risk of developing lymphoedema when pelvic nodes are removed. Secondary lymphoedema may develop in one or both legs.  This will require specific ongoing management including the use of special hosiery, massage; skin care and exercises (see separate information leaflet). If you are at risk of developing lymphoedema, you will be monitored by a CNS within the team. You may also require a referral to a lymphoedema specialist for ongoing management, this would be made by your consultant.

    Lymphocysts are a collection of lymphatic fluid which may occasionally form in the pelvis following pelvic node dissection.  Only a small proportion of lymphocysts require treatment which is usually done by aspirating the cyst if symptoms develop.

    Infection

    With any invasive operation there is a risk of infection.  Already mentioned are urine and vaginal infection.  There is also a risk of developing a chest infection particularly if you have breathing related illnesses or you smoke.  It is important to do deep breathing exercises after your operation.  If necessary, you may be referred for physiotherapy, or need a course of antibiotics.

    Another potential area of infection is the abdominal wound (cut on your abdomen) This can cause symptoms, such as redness around the wound; leakage from the wound or your temperature is raised.  A member of the nursing staff will check your dressing each day.  Please tell them if you are worried.  It is also possible to develop a blood collection behind the wound; this would cause extreme bruising and tenderness.

    Bleeding

    It has already been mentioned that there can be bleeding from the vagina and the abdominal wound.  Very occasionally patients bleed heavily during surgery, and it is necessary to have a blood transfusion.  If you have any concerns regarding this, please speak with your Consultant or Specialist Nurse.

    Damage to the Bowel or Bladder

    Due to the nature of your surgery and the anatomy inside the pelvis there is a small risk of damage to either the bladder, the ureters (tubes to the kidney) or the bowel. The surgeon doing your operation would explain beforehand if you were at an increased risk. 

    If there are any problems during the operation these would be dealt with appropriately and you would be informed after your surgery.

    Adhesions/Hernia

    Almost all patients undergoing surgery on their abdomen will develop some adhesions. This is scar tissue which sticks together.  They don’t usually cause symptoms and you are not aware of them. Rarely can they cause persistent pain or problems with bowel function.  A hernia is a defect in the scar that can develop, occasionally this requires corrective surgery.

    Developing a Clot

    It is well recognised that having major surgery can cause patients to develop Deep Vein Thrombosis (blood clot in the leg) or Pulmonary Embolism (blood clot in the Lung), and this also is increased for gynaecological cancer surgery.  As this is a known risk, all patients having major surgery are advised to wear anti embolism stockings until fully mobile, and blood thinning therapy (fragmin) is given each day for four weeks after your operation.

    All the above are possible complication which will be discussed with you prior to signing your consent form.  If you have any concerns, please speak to a member of the nursing team.

    Returning To Work

    Recovery time is variable for patients; a degree of tiredness is experienced for some time. Returning to work depends on the nature of your job.  You must feel comfortable at work and be able to cope physically and emotionally.  You will probably feel tired at first.  You will need to refrain from work for at least 6-12 weeks. Your GP may advise you when to return, or your consultant when you see or speak with them during your follow up appointment. You will be discharged home from the ward with a 6 week sick note.  Any subsequent notes required will be from your own G.P

    Your Questions Answered

    When Should I Stop Taking the Oral Contraceptive Pill?

    You should stop taking it as soon as possible before your operation and use a barrier method instead.  After the operation you will no longer be able to become pregnant.

    How Does Having a Hysterectomy Bring About the Menopause?

    The menopause happens when your ovaries stop producing eggs and therefore the hormones oestrogen and progestogen which control your monthly menstrual cycle are reduced. 

    You may already have experienced the menopause naturally.  If your ovaries are removed during your laparotomy and you have not already gone through the menopause, then you will have your menopause straight away.

    What Are the Symptoms of The Menopause?

    Hot flushes and night sweats are the most common.  These can be embarrassing, uncomfortable and can disturb your sleep.  Dryness in the vagina can cause pain and discomfort when engaging in penetrative intercourse.  Other problems are mood changes, tiredness, anxiety and loss of concentration.  Hair and skin can become dry, and joints may be painful.  In time, low oestrogen levels can cause osteoporosis (thinning bones) and heart disease.

    How Can Hormone Replacement Therapy Help?

    Hormone replacement therapy (HRT) relieves menopausal symptoms and can prevent osteoporosis.  As the name suggests, this treatment replaces the oestrogen your ovaries no longer produce.  There are many different types and strengths of HRT available.  HRT can be given either as tablets to be taken every day or as skin patches which you change twice a week.  Your doctor should be able to find a form of HRT to suit you.

    When Should You Start HRT?

    Your consultant will decide when and whether it is appropriate for you to start taking HRT.

    Are There Any Side Effects With HRT?

    Some women have nausea, breast tenderness or leg cramps at first, but this normally settles down quickly within the first three months.  Others find that their skin becomes sensitive to skin patches.  Occasionally headaches can become a problem.  HRT does not cause you to put on weight.

    What about Breast Cancer?

    Breast cancer is a common disease in older women and 1 in 8 women in the UK will suffer from it.  Studies show that taking HRT for up to 5 years does not appear to change the risk of getting the disease.  Experts believe that if you have had your ovaries removed you can take HRT up to the time you would have had your menopause and then for an additional five years before there is any likelihood of change in risk.

    There are also alternatives therapies/supplements to help with menopausal symptoms. These can be discussed with your nurse specialist.

    Driving

    Your movement and strength must be able to cope with an emergency stop before you return to driving.  You should feel comfortable behind the wheel, with a seat belt over your abdomen. Recommended guidelines suggest 4-6 weeks.  Or you could check with your insurance company.

    Sex

    It is advisable to refrain from intercourse for at least 12 weeks after an open radical hysterectomy.  This is to prevent infection and to reduce trauma.  Resuming sexual intercourse will depend on the type and extent of surgery you have had and if you are worried about this then please speak to a member of staff before you are discharged.

    Emotional Health

    What Will I Feel Like?

    After your operation, as after any big operation, you may feel low in mood, and tearful.  This is a normal reaction, which the doctors and nurses understand.  You may find it helps to talk with the staff caring for you, so don’t contain these feelings/emotions.

    As time passes, you will begin to start feeling better, but you may still have ‘up’ days and ‘down’ days.  It may take 6-12 months before you feel you have really adjusted physically and emotionally to what has happened.  This is also normal.  Some women find it helps to talk to their doctor, a specialist nurse or to one of the organisations listed at the back of this booklet.  Please feel free to discuss your concerns.

    Follow Up Appointment

    You will be given a follow up appointment either in clinic or via telephone approximately 4-5 weeks after your operation; this will be sent out to you.  At this appointment your doctor will have the report from the laboratory about the tissue from the operation.  Depending on these results, you may need further treatment with radiotherapy (x-ray treatment) or internal radiotherapy, and or chemotherapy, administered intravenously.  If this is recommended, your surgeon will discuss the treatment individually with you and you will also receive an appointment with your specialist nurse to discuss your treatment and any other support or information needs.

    Will I Come Back for Check-Ups?

    Yes, after your hysterectomy your consultant will ask you to attend hospital at regular intervals.  You will be given an appointment for the outpatient clinic, initially every 4 months and over time the appointments will become less frequent.  The follow up appointments will involve regular clinical assessment and vaginal examinations. (See - What to expect during your follow up care leaflet).

    Your family doctor will have received details of your operation, so if you feel that things are not gradually returning to normal when you are at home, you might like to discuss this with him/her. Well-meaning friends, relatives and even other patients can give inaccurate and sometimes alarming information.  Although many women are sometimes embarrassed to talk about themselves after this operation, it may be helpful for you to share your concerns with your family doctor or practice nurse.  If you are still worried you may wish to contact the hospital.

    Equal Opportunities

    The hospital is committed to promoting an environment, which provides equal opportunities for all patients, visitors and staff.  If you have any special requirements such as dietary needs, interpreter services, disability needs or a preference for a female doctor do not hesitate to discuss this with a member of staff who will try to help you.

    Where Can I Get Help?

    If you have queries or problems regarding your illness or operation, or experience any unexpected problems, please contact:

    • Your hospital doctor (Consultant)
    • or one of their team
    • or specialist nurse
    • or your family doctor/ practice nurse / community nurse

    Both National and local leaflets/information are available on all aspects of your recovery. Please ask your nurse specialist for further links to this information.

    Further Help

    The staff on the ward are always available to discuss these and any other issues with you fully, please do not hesitate to ask.

    A cancer information service is also provided by these organisations:

     

    • Gynae C

    Tel: 01793 302005

    www.communigate.co.uk/wilts/gynae

     

    • Jo’s Trust

    www.jotrust.org.uk

     

    • The Daisy Network (Menopause issues)

    PO Box 183

    Rossendale

    Lancs

    BB4 6WZ

    www.daisynetwortk.org.uk

     

    • Macmillan Cancer Support

    Cancer Support Line: 0808 808 0000

    www.macmillan.org.uk

     

    • Menopause Matters

    www.menopausematters.co.uk

     

    • Lymphoedema Support Network

    Tel: 020 7351 4480

    www.lymphoedema.org.lsn

     

    References:

     

    Gynaecology

    Shaw, Southler & Stanton

    Published by Churchill Livingstone

     

    Natural Alternatives to HRT

    Marilyn Glenville.

    Published by Kyle Cathie Ltd, 1997.

    ISBN 1-8-5626-254-5

     

    Hysterectomy –

    The emotional aspects,

    Published by Dennerstein, Wood & Burrows

     

    Hysterectomy – What it is and how to cope with it successfully

    Suzie Hayman – Sheldon Press,

    ISBN -0-859-69-870X,

    Biddles Press Ltd.

    www.biddles.co.uk

     

    Our Bodies Ourselves

    Jill Rakusen & Angela Phillips

    Published by Penguin

     

    A Woman’s Guide to Hysterectomy –

    Expectations  Options

    Published by Celestial Arts,

    ISBN 1-58761-105-8

     

    The Menopause

    Rosetta Reitta

    Published by Penguin

     

     

     

     

  • Laparotomy

    The leaflet is detailed below, or you can download the 'Laparotomy' leaflet in PDF.

    Laparotomy with or without Hysterectomy, Bilateral Salpingo-Oophorectomy

    This leaflet has been written and produced to inform you, your partner and family to assist and support you if you are considering or have been recommended to have this surgery. It is not intended to replace verbal information with your surgeon and specialist nurse.  You can access other information via websites available – see end of leaflet.

    What is a Laparotomy?

    A laparotomy means an operation to look inside the abdomen. Usually, the ovaries and fallopian tubes and the Uterus (womb) are removed.  Samples from other tissues such as the lymph glands and the omentum (a fatty layer) may also be removed. It may sometimes be necessary to remove a small piece of bowel and re-join the ends or form a stoma (where a piece of bowel comes through the skin onto the abdomen).  Occasionally if it is not possible to carry out the full operation, samples of tissue (Biopsies) will be taken and sent away for examination.

    The incision (cut) in your abdomen (tummy) will be vertical (up & down).  This allows your consultant to assess thoroughly for any signs of the disease spreading.  A sample of fluid (peritoneal washings) may also be taken from the area in the operation. Inpatient stay is approximately 3-5 days.

    Benefits & Reasons for Having a Laparotomy

    The aim of this surgery is to give the best possible treatment outcome.

    Your doctor will have explained that you may have or suspect that you have cancer of the ovaries or cancer of the womb or where laparoscopic surgery is not appropriate.  The operation can be performed for diagnosis and/or treatment. 

    Your partner and carer may also have concerns and questions about how they can help support you, throughout your recovery also how this may also affect them.

    Try to find out as much as you can about your treatment options and make a list of questions you may want to ask your doctor or specialist nurse.  (See information resources at back of leaflet).

    What Happens Before the Operation?

    You will attend Pre-operative Clinic either the same day as your see your consultant in clinic or visit on another date before the operation. During this visit the staff will discuss the type of operation you will be having and what to expect before and after.  You will have the opportunity to ask any questions that you may have.

    The staff will ask you to complete a health questionnaire and written and verbal information about the Enhanced Recovery programme will also be given to you.  It would also be helpful if you would make a list of all the medicines you are currently taking.  A few tests may be performed such as blood pressure, urine test, blood tests and sometimes a chest x-ray or heart tracing.  You may need to see an anaesthetist for assessment before your operation.  The pre op staff will discuss with you blood thinning injections when you go home after your operation; there is a risk of blood clots after any surgery (and particularly after surgery for cancer), and the injections (for up to 4 weeks after the operation) will minimise this risk.

    If you have any special requirements or needs (physical or practical) for your admission such as a special diet or religious/cultural needs, please let the staff know during your visit so that all necessary arrangements can be made.

    By attending the pre-operative clinic your future care can be jointly planned according to your individual needs, and all necessary steps taken to make your stay as comfortable as possible.  If you feel you may need help following surgery, please discuss this with your GP or the nurse at the pre-operative clinic

    In Hospital – Before your Operation

    You will be admitted to the hospital either on the day of your operation or the day before.  As soon as you know you need an operation, try and get yourself into the best possible physical shape so that you can recover more quickly.

    Stop smoking, eat a healthy diet and if able, take regular exercise.  If possible, make plans with your family for while you are in hospital and arrange for some extra help at home for your first couple of weeks at home. 

    You will be admitted to the gynaecology admissions unit and introduced to the nursing staff and a member of nursing staff will help prepare you for theatre.  

    Before you go into the operating theatre you will not be allowed to eat or drink for several hours before your operation.  If you are in hospital the night before you will be asked to shower the morning of the operation, if coming in on the day please do this prior to admission.

    There is usually an opportunity to meet the anaesthetist prior to surgery to discuss any concerns.

    You may be given support stockings to wear during and after your surgery and you will also be prescribed an injection to reduce the risk of blood clots in the post-operative period.  This is given as prescribed by the doctor.  A member of the ward team will escort you to theatre and they will complete a checklist prior to you leaving the ward.  The nurse will stay with you until the theatre reception staff takes over. 

    On arrival in theatre, you will meet the anaesthetist who will put you to sleep with an injection given via a small needle in the back of the hand.  When you wake up the operation will have been completed and you will be in the recovery room which is alongside theatre.  Here you will remain for a short while for observation, before being brought back to your bed on the ward.

    After Your Operation

    You will probably feel some discomfort when you wake, and you will be given painkillers as required (see leaflet).  You may have a drip in your arm and a catheter which is a small tube to drain urine from your bladder. 

    You will be seen by a consultant on the ward round following your day of surgery and your surgery will be explained and will be able to tell you when you can start to drink and get out of bed.

    A slight discharge or slight bleeding from the vagina is normal but if this becomes heavy you should tell your nurse straight away.  You may get griping wind pains caused by bowel and stomach gas, but there are medicines which can help. You will be given a laxative to aim to avoid constipation causing pain after the operation.

    Your stitches are usually dissolvable so do not need removing. Occasionally the surgeons will use clips and these will be removed by either the district nurse or you will be requested to make an appointment at a treatment room and you will be informed when this will happen.

    You will normally stay in hospital for 3-5 days. Once home you will receive an enhanced recovery phone call from your specialist nurse to assess your progress.

    All tissue taken at the time of your operation will be sent for examination and you will be informed of the result in clinic or by telephone, this usually takes 4-5 weeks. Following this the tissue will be disposed of in accordance with health and safety. You may be asked if a fragment of any tissue removed to be kept as part of our ongoing commitment to research for future treatments into cancer. This would only be done with your agreement.

    Possible Complications

    Although we try to make sure that any problems are kept to a minimum, no surgical operation can be guaranteed free of complications.  The operation itself or the general anaesthetic may occasionally give rise to difficulties, which will make your stay in hospital longer or your recovery slower.

    The risk of developing complications after surgery is increased in some patients.  If you smoke you are more at risk of a chest infection.  If you are overweight or diabetic you are more at risk of developing wound infection.

    Frequency and Pain in Passing Urine

    Occasionally, after a hysterectomy you may feel the need to pass urine more frequently.  This is a result of slight bruising and swelling of the bladder.  Pain relief such as paracetamol is recommended.  It is also beneficial to exclude a urine infection if this persists.

    ‘Wind Pain’ / Delayed Bowel Function 

    The operation can affect your bowel function and cause increased wind pain.  This can cause pain in the abdomen, shoulder and back.  Eating small quantities, especially of fruit and vegetables, and drinking plenty of fluid will help to re-establish your normal bowel movements. Painkillers and moving about will also ease the discomfort.

    Occasionally the bowel can ‘slow down’.  This is known as an Ileus.  This can cause abdominal pain and distension, vomiting and constipation.  If this happens you will have a drip and not be allowed to eat until your symptoms settle, usually within a couple of days.

    Constipation 

    It usually takes time for your bowels to return to their normal pattern; you will be offered laxatives to take after the operation to minimise any potential problems with bowel function. 

    Vaginal Bleeding / Discharge

    Some women have a small bloodstained vaginal discharge after the operation.

    Occasionally you can bleed quite heavily.  This may be a sign that the wound inside your vagina is not healing, or that there is infection or a blood collection developing.  If you are concerned about your bleeding, please tell the nurse looking after you and she will assess if it is normal.

    If this becomes a heavy loss or an unpleasant smelling discharge when you go home, you are advised to contact your GP or the gynaecology ward.

    Infection

    With any invasive operation there is a risk of infection.  Already mentioned are urine and vaginal infection.  There is also a Risk of developing a chest infection particularly if you have breathing related illnesses or you smoke.  It is important to do deep breathing exercises after your operation.  If necessary, you may be referred for physiotherapy, or need a course of antibiotics.

    Another potential area of infection is the abdominal wound (cut on your tummy). For example, redness around the wound or your temperature is raised.  A member of the nursing staff will check your dressing each day.  Please tell them if you are worried.  It is also possible to develop a blood collection behind the wound; this would cause extreme bruising and tenderness.

    Bleeding

    It has already been mentioned that there can be bleeding from the vagina and the abdominal wound.  Very occasionally patients bleed heavily during surgery, and it is necessary to have a blood transfusion.  If you have any concerns regarding this, please speak with your Consultant or Specialist Nurse.

    Damage to the Bowel or Bladder

    Due to the nature of your surgery and the anatomy inside the pelvis there is a small risk of damage to either the bladder, the ureters (tubes to the kidney) or the bowel. The surgeon doing your operation would explain beforehand if you were at an increased risk.  If there are any problems during the operation these would be dealt with appropriately and you would be informed after your surgery.

    Adhesions / Hernia

    Almost all patients undergoing surgery on their abdomen will develop some adhesions.  This is scar tissue which sticks together.  They usually cause no symptoms, and you are not aware of them.  Rarely can they cause persistent pain or problems with bowel function.  A hernia is a defect in the scar that can develop, occasionally this requires corrective surgery.

    Developing a Clot

    It is well recognised that having major surgery can cause patients to develop Deep Vein Thrombosis is (blood clot in your leg) or Pulmonary Embolism, (blood clot in your lung) and this also is increased for gynaecological cancer surgery.  As this is a known risk, all patients having major surgery are advised to wear anti embolism stockings until fully mobile, (fragmin) a blood thinning therapy is given each day depending on your risk score (see separate leaflet). 

    All the above are possible complications which will be discussed with you prior to signing your consent form.  If you have any concerns, please speak to a member of the nursing team.

    Your Questions Answered

    When Should I Stop Taking the Oral Contraceptive Pill?

    You should stop taking it as soon as possible before your operation and use a barrier method instead.  After the operation you will no longer be able to become pregnant.

    How Does Having a Laparotomy Bring About the Menopause?

    The menopause happens when your ovaries stop producing eggs and therefore the hormones oestrogen and progestogen which control your monthly menstrual cycle are reduced.  You may already have experienced the menopause naturally.  If your ovaries are removed during your laparotomy and you have not already gone through the menopause, then you will have your menopause straight away.

    What are the Symptoms Of The Menopause?

    Hot flushes and night sweats are the most common.  These can be embarrassing, uncomfortable and can disturb your sleep.  Dryness in the vagina can cause pain and discomfort when having sexual intercourse.  Other problems are mood changes, tiredness, anxiety and loss of concentration.  Hair and skin can become dry and joints may be painful.  In time, low oestrogen levels can cause osteoporosis (thinning bones) and heart disease.

    How Can Hormone Replacement Therapy Help?

    Hormone replacement therapy (HRT) relieves menopausal symptoms and can prevent osteoporosis.  As the name suggests, this treatment replaces the oestrogen your ovaries no longer produce.  There are many different types and strengths of HRT available.  HRT can be given either as tablets to be taken every day, as implants which are inserted under the skin every 6 months or so or as skin patches which you change twice a week.  Your doctor should be able to find a form of HRT to suit you.

    Can I Have HRT and When Should you Start HRT?

    Your consultant will advise you based on your results if it is appropriate for you to consider HRT and if so when to start.

    Returning to Work

    Recovery time is variable for patients; a degree of tiredness is experienced for some time. Return to work depends on the nature of your job.  You must feel comfortable at work and be able to cope. You will probably feel tired at first.  You will need to refrain from work for at least 8-12 weeks but your Consultant and Clinical Nurse Specialist will give you advice.

     Driving

    Your movement and strength must be able to cope with an emergency stop before you return to driving.  You should feel comfortable behind the wheel, with a seat belt over your abdomen. Recommended guidelines suggest 6 weeks, or you could check with your insurance company.

    Sex

    It is advisable to refrain from intercourse for at least 12 weeks.  This is to prevent infection and to reduce trauma.  Resuming sexual intercourse will depend on the type and extent of surgery you have had and if you are worried about this then please speak to a member of staff before you are discharged. 

    Emotional Health

    What will I feel like?

    After your operation, as after any big operation, you may feel low in mood, tearful or even feel depressed.  This is a normal reaction, which the doctors and nurses understand.  You may find it helps to talk with the staff caring for you so don’t bottle up your feelings.

    As time passes, you will begin to feel more like yourself, but you may still have ‘up’ days and ‘down’ days.  It may take 6-12 months before you feel you have really adjusted physically and emotionally to what has happened.  This is also normal.  Some women find it helps to talk to their doctor, a clinical nurse specialist or to one of the organisations listed at the back of this booklet.  Please feel free to discuss your concerns.

    Follow up appointment

    Yes, you will be given a follow up appointment for approximately 4-5 weeks after your operation.  This appointment may be in hospital or by telephone. At this appointment your doctor will have the report from the laboratory about the tissue from the operation.  Depending on these results, you may need further treatment with chemotherapy (drugs) or radiotherapy.  If this is recommended, your surgeon will discuss the treatment individually with you and you will be supported by your specialist nurse.

    Will I come back for check-ups?

    After your hysterectomy the doctors will discuss with you if any further follow up appointments are recommended.   The follow up may be in the form of a face-to-face appointment in hospital which would include a vaginal examination. It may be patient supported follow up is offered where you are supported on a surveillance platform called “my medical record” or it may be no follow up is needed. Whichever follow up is appropriate it will be explained to you.

    Your GP will have received details of your operation, so if you feel that things are not gradually returning to normal when you are at home, you might like to discuss this with him/her or your specialist nurse.

    Equal Opportunities

    The hospital is committed to promoting an environment, which provides equal opportunities for all patients, visitors, and staff.  If you have any special requirements such as dietary needs, interpreter services, disability needs or a preference for a female doctor do not hesitate to discuss this with a member of staff who will try to help you.

    Where can I get help?

    If you have queries or problems regarding your illness or operation, or experience any unexpected problems, please contact:

    • Your hospital doctor (Consultant)
    • one of their team
    • specialist nurse
    • your family doctor/ practice nurse / community nurse

    Both National and local leaflets/information are available on all aspects of your recovery. Please ask your nurse specialist for further links to this information.

    Further Help

    The staffs on the ward are always available to discuss these and any other issues with you fully, please do not hesitate to ask.

    A cancer information service is also provided by these organisations:

    The Daisy Network

    PO Box 183

    Rossendale

    Lancs

    BB4 6WZ

    www.daisynetwork.org.uk

    Ovacome

    Po Box 6294

    London

    W1A 7WJ

    Ovacome Support Line:  0845 371 0554

    Email:  ovacome@ovacome.org.uk

    http://www.ovacome.org.uk

    Gynae C

    Tel:  01793 302005      

    www.communigate.co.uk/wilts/gynae

    Menopause Matters

    www.menopausematters.co.uk 

    Macmillan Cancer Support

    Cancer Support Line:  0808 808 0000

    www.macmillan.org.uk

    Eve Appeal

    www.eveappeal.org.uk

    References

    Gynaecology

    Shaw, Southler & Stanton

    Published by Churchill Livingstone

    Hysterectomy –

    The emotional aspects,

    published by

    Dennerstein, Wood & Burrows

    Natural Alternatives to HRT

    Marilyn Glenville

    Published by Kyle Cathie Ltd

    ISBN -1 -8 5626- 254- 5

    Our bodies Ourselves

    Jill Rakusen & Angela Phillips

    Published by Penguin

    The Menopause

    Rosetta Reitta

    Published by Penguin

    A Woman’s Guide to Hysterectomy – Expectations & Options

    A Hass & S Puretz

    Published by Celestial Arts

    ISBN 1-58761 - 105 - 8

     

                                 

     

  • Drainage of Ascites (paracentesis)

    The leaflet is detailed below, or you can download the 'Drainage of Ascites (paracentesis)' leaflet in PDF.

    What is ascites?

    Ascites is a collection of fluid in the abdomen, commonly caused by cancer, but can also be due to other reasons. The fluid is produced in the abdominal cavity faster than it can be reabsorbed, causing the abdomen to swell, and sometimes become uncomfortable.

    When and why does it need draining?

    Drainage of ascites can be done either to find an answer as to exactly what is causing the build-up of fluid, or because it becomes uncomfortable. If not drained, ascites can cause pain, discomfort, sleepless nights, swollen legs and sometimes difficulties with breathing because of the swelling of the abdomen.

    Who decides when it needs draining?

    We are normally guided by you as to when to drain the ascites. If you are feeling uncomfortable, particularly if this has happened before, you are likely to know when you need to have the ascites drained. We would normally confirm that there is fluid to be removed by using an ultrasound scan before draining the ascites. The scan and the drainage of ascites will be done by a doctor, or a surgical care practitioner trained in both scanning and the procedure. The doctor or surgical care practitioner will talk you through the procedure and take your written consent prior to the procedure. Sometimes we may ask your permission for a doctor being trained in the technique to perform the procedure under supervision. You are perfectly entitled to decline if you wish. If there is insufficient fluid to drain, we will talk to you about whether a re- assessment scan usually between 4-7 days later might be worthwhile.

    How is it done?

    Drainage is usually done as a day case but occasionally can involve an overnight stay in hospital. An ultrasound scan is performed either; prior to the drainage or at the same time, to show the doctor the right place to drain the fluid. A local anaesthetic is used to numb the skin. After the anaesthetic, a long thin tube is put through the skin into the abdominal cavity containing the ascites. The local anaesthetic used on the skin may not affect the internal layers of the body, so some people feel some discomfort as the needle goes in. However, this is normally very short-lived, and most find it manageable. Once in place, the tube is taped to the skin, and the ascitic fluid drained off, usually within the next 4-6 hours. The fluid can be clear, straw coloured or blood stained: all are normal. The removal of the fluid itself is painless. Once the ascites has been drained off (commonly between 2 to 9 litres of fluid is removed) the tube is taken out, the small incision is covered with a dressing, and you will be free to go home. Your District Nurse and GP will be told of your stay in hospital, so that they can support you at home after leaving hospital.

    Can I eat and drink before the procedure?

    You can eat and drink as you usually would prior to the procedure.

    Can I take my regular medication?

    Yes  - unless you are taking a water tablet ( diuretic) or a blood thinner tablet or injections  ( anti-coagulant)  when specific advice will be give if you are taking any of these medications.

    How will you feel following the procedure?

    Some people will experience some abdominal discomfort or ache following the procedure, which usually settles within a short time. Simple analgesia i.e. paracetamol may be helpful for this. You may feel fatigued/tired following the drainage for a few days; this is related to proteins being lost in the fluid. If you can eat well during this time it will help, some people may benefit from supplement drinks this can be assessed by the dietician or doctor. Possible problems although draining ascites is almost always uncomplicated, there are rare chances of complications. Injury to the bowel is possible, although using ultrasound to see where to put the drain makes this very rare (1-10 per 10,000). As with the use of any needle, there is the chance of infection at the site of drainage: if you have any redness or tenderness at the site of the needle, please contact the hospital. It can occasionally be difficult or impossible to drain off the ascites as:

    • The tube can get blocked.
    • The ascites can collect in small separate pockets.
    • If there is no safe place to put the drain.

    It is not uncommon for the drainage site to leak for a few days. A dressing or occasionally a bag over the area may be needed to catch the leakage. If this is required, the ward nurses will apply the bag and arrange for the district nurse to assess when you leave hospital. Some women also notice some discomfort after the ascites has been removed and can have a change in bowel habit following drainage. Both usually settle within a few days. Diuretics (Water Tablets) may be used to reduce the build-up of ascites. You may be offered spironolactone or frusemide (or both) after the ascites has been removed. If you are on or have commenced diuretics, you may need to have blood tests taken when you go home. If this is necessary a request will be sent to the GP, or arrangements made to re attend the hospital for a blood test.

    How can I arrange for the ascites to be drained?

    If you feel the ascites needs draining, please ring one of the Clinical nurse specialists. The paracentesis is usually carried out on a Wednesday or Thursday morning, but this depends on the availability of the doctor or Surgical care practitioner and bed availability. Please inform the nurses and doctor if you are receiving chemotherapy treatment or taking anticoagulation medicines (blood thinners) such as warfarin, rivaroxaban tablets or fragmin/Clexane/Tinzaparin injections, as you may need extra blood tests or instruction on your medications. Please bring an overnight bag with you in case you need to stay one night in hospital, although we aim to be able to get you home between 4 and 6pm the same day in most situations.

    Useful Telephone Numbers

    Clinical Nurse Specialist 0151 702 4186 (Monday to Friday 8-4, outside these hours you can leave a voicemail message)

    Gynaecology Ward 0151 708 9988 Ext 4580

  • Early Diagnosis Support Worker

    The leaflet is detailed below, or you can download the 'Early Diagnosis Support Worker' leaflet in PDF.

    What is an Early Diagnosis Support Worker?

    This is a new role which has been developed to improve the quality of service and experience of patients referred to the hospital on the suspected cancer pathway.

    Early Diagnosis Support Workers liaise with a team of Doctors and Nurses to improve patient care and focus on diagnosing or excluding cancer as early as possible.

    Roles and responsibilities of a Support Worker

    •  This new role is flexible and therefore we are able to adapt to the needs of the patients we support.
    • We will be a point of contact for you, your relatives and carers during your cancer investigations.
    • We can provide advice, information & explanations for you as you wait for your tests & results.
    • We work on your behalf with the multi-disciplinary team to complete your tests & arrange appointments in a timely manner.
    • Where appropriate we can signpost the most relevant services to you including those supporting lifestyle changes.

    For more information:

    Please ask your Doctor/Consultant/Specialist Nurse

    or

    Contact the Early Diagnosis Support Worker directly:

    Lisa Doyle or Donna Neary:   0151 702 4131

     

    Other useful contacts

    Liverpool Women’s Hospital Foundation Trust

    Tel: 0151 708 9988

    E-mail: http://www.liverpoolwomens.nhs.uk

    Twitter and Facebook:@LiverpoolWomens

     

    Liverpool University Hospitals NHS Trust

    Web: https://www.liverpoolft.nhs.uk/

    The Royal Liverpool Hospital: 0151 706 2000

    E-mailmacmillansupportcentre@luhft.nhs.net

    Aintree University Hospital: 0151 525 5980

    Web:  https://www.aintreehospital.nhs.uk/

     

    Clatterbridge Cancer Centre

    Web: https://www.clatterbridgecc.nhs.uk/

    Telephone: 0151 556 5000

     

    Macmillan Cancer Support

    For information and financial support

    Telephone: 0808 808 00 00

    Website: www.macmillan.org.uk

     

    Cancer Alliance Early Diagnosis Support Worker Information:

    www.cmcanceralliance.nhs.uk

    https://www.cmcanceralliance.nhs.uk/hee-terms-reference/cancer-support-workers

     

     

     

  • Robotic Surgery for Endometrial Cancer Information Leaflet

    The leaflet is detailed below, or you can download 'Robotic Surgery for Endometrial Cancer Information Leaflet' in PDF. 

    PATIENT ID                  DIAGNOSIS:

     

    GRADE:

                                                              RADIOLOGICAL STAGE:

    What is a Hysterectomy?

    A hysterectomy is an operation to remove the uterus (womb).The type of hysterectomy you will have will depend on your individual circumstances. Your surgeon will talk to you about which hysterectomy is best for you.

    What type of Hysterectomy has been offered to you?

    Total hysterectomy with bilateral salpingo-oophorectomy

    What is removed?

    The uterus, cervix, ovaries and the fallopian tubes are removed.

    What is left behind?

    The vagina is left behind.

    Why should you have a Hysterectomy?

    Definitive surgical management of womb cancer (uterine or endometrial cancer).

    Your doctor will discuss with you the reasons why you need the operation.

    How is a Hysterectomy performed?

    A hysterectomy can be performed using various approaches, such as an open procedure (traditional) or minimal access surgery, or key-hole surgery (laparoscopic or robotic assisted). Which procedure is best for you will be decided in consultation with you and your surgeon.  Your surgeon will explain to you their opinion on which method is most appropriate for you.

    The minimal access surgery (key-hole) hysterectomy procedure is carried out using four or five small incisions (key-holes) rather than one large incision (as in traditional surgery). These incisions are about 1cm in length, (compared to a single 15cm long incision used in traditional open surgery) with the uterus being removed via the vagina. This minimal access (key-hole) procedure is now offered via either the traditional manner using laparoscopic instruments or by the surgeon with the help of a robot (robotic assisted).

    What is robot-assisted surgery?

    Firstly, it is important for you to understand that the robot is not performing the surgery.

    The surgeon still carries out the procedure, but the robotic console allows more controlled and precise movements during the operation, the robot is only assisting the surgeon. Robot-assisted surgery is a laparoscopic (key-hole) technique that the surgeon performs by using a robotic console during the operation. Your surgeon is in the same room, but away from you, and controls the robot’s arms during the operation.

    The robot has four arms. One holds a high-magnification 3D camera, which is inserted into your abdomen through one of the keyholes. This allows your surgeon to see inside. The other robotic arms hold various instruments, which your surgeon will use to carry out the operation. The instruments are smaller than those used for conventional open surgery.

    What are the advantages of robotic surgery?

    • Shorter hospital stay
    • Less pain
    • Reduced risk of wound infection
    • Less blood loss meaning a reduced need for a blood transfusion
    • Reduced scarring
    • Faster recovery after leaving the hospital
    • Quicker return to normal activities, such as driving

    What are the possible complications?

    Although we try to make sure that any problems are kept to a minimum, no surgical operation can be guaranteed free of complications. The operation itself or the general anaesthetic may occasionally give rise to difficulties, which may make your stay in hospital longer, or your recovery slower.

    The risk of developing complications after surgery is increased in some patients. If you smoke you are more at risk of chest infections. If you are overweight or diabetic you are more at risk of developing a wound infection.

    Possible post-operative complications include:

    • Frequency and pain passing urine. Occasionally after a hysterectomy you may feel the need to pass urine more frequently. This is a result of slight bruising and swelling of the bladder. Pain relief such as paracetamol is recommended. It is also beneficial to exclude a urine infection if symptoms persist.
    • ‘Wind Pain’ / Delayed Bowel Function. The operation can affect your bowel function and cause increased wind pain. This can cause pain in the abdomen, shoulder and back. Eating small quantities, especially of fruit and vegetables, and drinking plenty of fluid will help to re-establish your normal bowel movements. Painkillers and moving about will also ease the discomfort. Occasionally the bowel can ‘go on strike’. This is known as an Ileus. This can cause abdominal pain and distension, vomiting and constipation. If this happens you will be put on a drip and not be allowed to eat until your symptoms settle, usually within a couple of days. The risk of an ileus is higher if you have had an abdominal hysterectomy.
    • It usually takes time for your bowels to return to their normal pattern; you will be offered laxatives to take after the operation to minimise any potential problems with bowel function.
    • Vaginal Bleeding / Discharge. Some women have a small blood stained vaginal discharge after the operation. Occasionally you can bleed quite heavily. This may be a sign that the wound inside your vagina is not healing, or that there is infection or a blood collection developing. If you are concerned about your bleeding please tell the nurse looking after you and she will assess if it is normal. If this becomes a heavy loss or an unpleasant smelling discharge when you go home, you are advised to contact your GP or the gynaecology ward.
    • With any invasive operation there is a risk of infection. Already mentioned are urine and vaginal infections. There is also a risk of developing a chest infection particularly if you have breathing related illnesses or you smoke. It is important to do deep breathing exercises after your operation. If necessary you may be referred for physiotherapy, or need a course of antibiotics. Another potential area of infection is the abdominal wound (cut on your tummy). For example, redness around the wound or your temperature is raised. A member of the nursing staff will check your dressing each day. Please tell them if you are worried. It is also possible to develop a blood collection behind the wound; this would cause extreme bruising and tenderness.
    • It has already been mentioned that there can be bleeding from the vagina and the abdominal wound. Very occasionally patients bleed heavily during surgery and it is necessary to have a blood transfusion. If you have any concerns regarding this please speak with your Consultant or Specialist Nurse.
    • Damage to the Bowel or Bladder. Due to the nature of your surgery and the anatomy inside the pelvis there is a small risk of damage to either the bladder, the ureters (tubes to the kidneys) or the bowel. The surgeon doing your operation would explain beforehand if you were at an increased risk. If there are any problems during the operation these would be dealt with appropriately and you would be informed after your surgery.
    • Adhesions / Hernia. Almost all patients undergoing surgery on their abdomen will develop some adhesions. This is scar tissue which sticks together. They usually cause no symptoms and you are not aware of them. Rarely can they cause persistent pain or problems with bowel function. A hernia is a defect in the scar that can develop, occasionally this requires corrective surgery.
    • Developing a Clot. It is well recognised that having major surgery can cause patients to develop Deep Vein Thrombosis (blood clot in your leg) or Pulmonary Embolism, (blood clot in your lung) and this also is increased for gynaecological cancer surgery. As this is a known risk, all patients having major surgery are advised to wear anti embolism stockings and to have a blood thinning injection (Fragmin) each day.

    Is there anything I should do to prepare for my operation?

    Before your operation, an appointment will be made for you to come to the hospital for a pre-assessment meeting. This is performed for all types of operation. If you have not already signed your consent form, you will see a doctor who will fully explain the operation to you and answer any questions you may have. At this appointment, you will have some tests and a nurse will discuss your operation again with you, to ensure that you fully understand why you need the operation and what is going to happen to you. If you have any questions, then please write them down and bring them to the appointment with you. Make sure that all of your questions have been answered to your satisfaction and that you fully understand what is going to happen to you.

    If you are a smoker, you should stop smoking or reduce the number of cigarettes you smoke in the days leading up to the date of your operation. This could reduce the risk of chest problems as smoking makes your lungs sensitive to the anaesthetic used.

    If you need further information about stopping smoking please contact your GP or Smokefree NHS on 0800 022 4332.

    You should also eat a healthy diet. If you feel well enough, take some gentle exercise before the operation as this will also help speed your recovery afterwards.

    Before you come into hospital for your operation, try to organise things ready for when you come home. If you have a freezer, stock it with easy-to-prepare food. Arrange for relatives and friends to do your heavy work (such as changing your bedding, vacuuming and gardening) and to look after your children, if necessary.

    Formation of blood clots - how to reduce the risk

    You can reduce the risk of clots by:    

    • Being as mobile as you can as early as you can after your operation
    • Doing exercises when you are resting, for example:
    • Pump each foot up and down briskly for 30 seconds by moving your ankle
    • Move each foot in a circular motion for 30 seconds
    • Bend and straighten your legs - one leg at a time, three times for each leg.
    • Daily heparin injections (a blood thinning agent) - you may need to continue having these injections daily when you go home; your doctor will advise you on the length of time you should have these for
    • Graduated compression stockings, which should be worn day and night until your movement has improved and your mobility is no longer significantly reduced.

    When should I seek medical advice?

    • If there is red and painful skin around your scars: This may be caused by a wound infection. Treatment is with a course of antibiotics.
    • If you experience burning and stinging when you pass urine or need to pass urine more frequently. This may be due to a urine infection. Take a urine sample and contact your GP.
    • If you experience heavy or smelly vaginal bleeding: This may be because of an infection or a small collection of blood at the top of the vagina. Treatment is usually with a course of antibiotics.
    • If you notice one or both of your legs are swollen, or you have shortness of breath or chest pain. There is a small risk of blood clots forming in the veins in your legs and pelvis (deep vein thrombosis) after any operation. Rarely, these clots can travel to the lungs (pulmonary embolism).
    • Increasing abdominal pain. If you have increasing pain along with a temperature (fever), loss of appetite or vomiting, this may be because of damage to your bowel or bladder, in which case you need to come to the hospital.

    Surgical Care during the Coronavirus (COVID-19) Pandemic

    Your assessment and care may be disrupted, delayed or performed differently during the pandemic.

    Coming into the hospital might increase your chances of contracting COVID-19 virus, or you may be already carrying it when you come for your operation.

    If COVID-19 infection occurs when you have surgery or whilst in hospital, this could make your recovery more difficult, or increase your risk of serious illness, or death.

    We will do everything we can to perform your operation, keep you safe, and to provide you with information at all stages. We will listen to your concerns and discuss them.

    You may wish to delay your operation, and we would understand your reasons for this. However, future dates for surgery may take much longer than normal to be scheduled.

    Special preparation in relation the COVID-19 pandemic

    The pre-op team will advise you to self-isolate prior to your procedure and the hospital will undertake a swab test to rule out any evidence of current COVID -19 infections. Please kindly declare if you have any symptoms of COVID-19 or have had any close contact with someone who has been diagnosed with COVID-19. Please kindly inform the pre-op assessment team.

    What happens on the day of my operation?

    You will meet the team

    You will be admitted to the ward on the day of your operation. You will meet the nurses and doctors involved in your care. The anaesthetist may visit you to discuss the anaesthetic. Any further questions you have can also be discussed at this time.

    Sometimes you may have to wait on the ward for a few hours. The length of that wait depends on when your operation is scheduled on the operating list. This can change at short notice.

    You will not be allowed to have anything to eat (including chewing gum or sweets) for 6 hours prior to the operation; or anything to drink for 2 hours before the operation. The ward staff will tell you more about this. You will be asked to change into a theatre gown. All makeup, nail varnish, jewellery (except your wedding ring), dentures and contact lenses must be removed.

    What happens after the procedure?

    The following information is a guide as to what may happen after your operation.

    Everyone recovers at a different pace and if you have any concerns please talk to any of the doctors or nurses responsible for your care.

    When you wake up you will have:

    • an oxygen mask on your face to help you breathe after the general anaesthetic
    • a drip in your arm to give you fluids
    • a small clip on your finger to check your oxygen levels
    • a temporary bladder catheter (a fine tube) inserted into your bladder to help you pass urine

    Usually people are independently up and about the next day and go home after lunch time if all remains well.

    You will feel very tired and it is important that you do not have too many visitors on the first day after your operation.

    The first day after your operation:

    To help you recover from your operation and reduce the chance of problems, the ward

    team will encourage you to:

    • Sit upright, especially out of bed. This lets your lungs open up fully, making it easier

    to cough, and helps to prevent you from getting a chest infection.

    • Start moving around. They will do that as soon as possible because it is good for your blood circulation and along with your surgical stockings can help prevent blood clots. Please do not get out of bed until your nurse has told you it is safe to do so.

    You will be given a daily injection of a medication (Low Molecular Weight Heparin – ‘Fragmin’) to reduce the risk of blood clots. You may be discharged with a months’ supply of these injections depending on your particular risk factors. Your nurse will teach you how to give yourself these.

    Once you are able to drink normally your drip will be taken away. Drinking plenty of fluids and walking around will also help your bowels to start working again. Your catheter will be removed the next day at 6am if all is well, unless you are instructed otherwise by your surgeon.

    You will be given tablets or suppositories to control any pain.

    When can I go home?

    You will usually stay in hospital for one day and go home the next day after your operation if all remains well.

    What happens after I go home?

    It is important that you follow all the advice you are given when you leave the ward. You should continue to do the pelvic floor exercises you were shown in hospital to help prevent problems with urinary incontinence (the involuntary passing of urine).

    About 10 to 14 days after your operation, you may notice that the amount of pinkish/brown fluid (discharge) coming from your vagina increases. This will last for a few days and is a normal part of the healing process.

    What can and can’t I do when I am at home?

    The following guidelines will give you an idea as to how much you can do at home after your operation.

    Post-operative weeks one and two

    • Do have baths or showers, but avoid using perfumed/scented gels or soap on your wound area – they can irritate the area and delay healing. Gently pat your wound dry.
    • Do take short walks and do gentle physical exercises.
    • Do not lift anything which is heavier than a kettle full of water.
    • Do not do any strenuous physical activity (activity that makes you feel out of breath).
    • Do not have sexual intercourse.
    • Do not put anything inside your vagina. Use sanitary towels (instead of tampons) for any vaginal bleeding.
    • Do not use vaginal lubricants, creams or gels.
    • Do not drive.

    Post-operative weeks’ three to five

    • Do continue to gently increase the amount of physical activity you are doing – walking is good.
    • Do allow yourself resting time in your daily routine.
    • Do not have sexual intercourse.
    • Do not put anything inside your vagina.
    • If you have had a Laparoscopic (key-hole) operation, you can start driving again provided you do not have pain when moving and you feel comfortable performing an emergency stop. Consult your insurance company before driving. If you are not sure about when to resume driving, please visit your GP to check your progress.
    • Do not drive if you have had an open operation.

    Post-operative week six

    • You can start back with your normal activities.
    • You can start driving again if you had an open operation, provided you do not have pain when moving and you feel comfortable performing an emergency stop. Consult your insurance company before driving. If you are not sure about when to resume driving, please visit your GP to check your progress.
    • If you no longer have pain or vaginal bleeding you can start to have sexual intercourse and use tampons. If you have pain or bleeding after starting sex again, please contact the ward or your GP for advice.
    • Continue to increase your physical activity and rest when you feel tired.

    Some women tell us that it can take four to six months before they feel fully recovered after their hysterectomy. But often it is sooner.

    Will my life be different after a Hysterectomy?

    Feeling tired

    At first, you will feel more tired and some women take time to adjust to losing their womb.

    Menopause

    Most women who are diagnosed with womb cancer will already have gone through the menopause. Surgery for womb cancer can include removing the ovaries, which would then cause pre-menopausal women to go through the menopause. If you are pre-menopausal, further advice will be given by your doctor and clinical nurse specialist team on how to manage menopausal symptoms.

    Emotional Health

    After your operation, as after any major operation, you may feel depressed and tearful.  This is a normal reaction. As time passes, you will begin to feel better but you may still have ‘up’ days and ‘down’ days.  It may take 6-12 months before you feel you have really adjusted physically and emotionally to what has happened.  This is also normal.  Some women find it helps to talk to their doctor, a specialist nurse or to one of the organisations listed at the back of this booklet.

    Will I have a follow-up appointment?

    You will be given a follow-up appointment before you are discharged from the ward, for approximately 3 weeks after your operation.  At this appointment your doctor will have the report from the laboratory about the tissue from the operation.  Depending on these results, you may need further treatment with radiotherapy (X-ray treatment) and/or chemotherapy (drugs).  If this is recommended, your doctor will discuss the treatment individually with you. This consultation may be over the telephone, or face to face in clinic.

    How to contact the Gynaecology Oncology Clinical Nurse Specialist team:

    Monday to Friday 8am-4pm telephone 0151 702 4186.

    If you get the answerphone please leave your name, date of birth, telephone number and a brief message. Your call will be answered within 24 hours or on the next working day if it is a weekend or bank holiday.

    Support Networks Available Locally

    Further information, advice and support are available for you/partner and family from:

    • Lyndale Cancer Support Centre - Knowsley

    Tel: 0151 489 3538

    • Sefton Cancer Support Group

    Tel: 01704 879352

    www.seftoncancersupport.org.uk

    • St Helens Cancer Support Group

    Tel: 01744 21831

    • Warrington & District Cancer Self-Help Group

    Tel: 01925 453139

    • Widnes & Runcorn Cancer Support Group

    Tel: 0151 423 5730

    • Isle of Man

    Manx Cancer Help Association

    Tel: 01624 679554

    www.manxcancerhelp.org

    • Liverpool Sunflowers

    Liverpool Cancer Support

    Tel: 0151 726 8934

    • V.O.C

    Gynaecological Support Group

    Tel: 0151 702 4186

    • The Wirral Holistic Care Services

    Tel: 0151 652 9313

    www.wirralholistic.org.uk

    • Maggie’s Centre

    Clatterbridge

    Tel: 0151 334 4301

               

     

     

     

     

  • Cancer of the Womb

    The leaflet is detailed below, or you can download the'Cancer of the Womb' leaflet in PDF.

    This leaflet has been written to help you understand about cancer of the Womb (Uterine/ Endometrial Cancer), its diagnosis, treatment and support available.

    You may wish to discuss some aspects with your doctor or Gynaecology Clinical Nurse Specialist (CNS) Team.

    What is Cancer?

    The organs of the body are made up of cells. Cancer is a disease of these cells. The cells normally divide in an orderly manner. Sometimes the cells divide out of control - developing into a lump/tumour. A tumour which is malignant consists of cancer cells which have the ability to spread beyond the original site, destroying surrounding tissue. Sometimes they can break away and spread to other parts of the body.

    The Womb

    The womb, also known as the uterus, is a muscular organ, usually about the size and shape of a pear, sits in the pelvis. It is here that a baby develops during pregnancy. The lining of the womb is called the endometrium. This thickens during the menstrual cycle, in preparation for a fertilised egg and is shed during a period if the egg is not fertilised.

    How does Cancer of the Womb develop?

    We may not know the exact cause of your cancer; yet, we do know womb cancer is the 4th most common cancer in females in the UK, accounting for 5% of all new cancer cases in females (NHS, 2023). There were 9703 new cases of womb cancer reported in the UK between 2016 and 2018 (Cancer Research UK 2021). Womb cancer risk, like most cancer types, increases with age, with the highest rates of womb cancer found in the 75-79years age group.

    Womb cancer is rare in women under 40 and becomes more common after the age of 55. Most womb cancers start in glandular cells found in the lining of the womb (the endometrium). They are called endometrial cancers. They are usually diagnosed early and treated successfully.

    There are different types of endometrial cancer:

    • Endometrioid cancer
    • Serous endometrial carcinoma
    • Carcinosarcoma
    • Clear cell carcinoma
    • Mucinous carcinoma
    • Mixed cell endometrial cancer (Macmillan, 2021)

    Potential Risk Factors?

    There are certain factors that can increase the risk of developing womb cancer such as age, hormonal factors, obesity and lack of physical activity. Other medical conditions may cause an increased risk of pre-cancerous changes in the womb or womb cancer such as; thickening of the womb lining, diabetes, polycystic ovary syndrome. An additional risk factor is current or previous use of Tamoxifen, a hormonal drug used to treat breast cancer. There are also some known genetic conditions that can increase the risk of womb cancer such as Lynch Syndrome, also known as HNPCC or hereditary nonpolyposis colorectal cancer. (Macmillan, 2021)

    What are the signs and symptoms?

    The most common early presentation is unusual vaginal bleeding (Macmillan, 2021).

    This could be:

    • Post-menopausal bleeding
    • Bleeding in between periods
    • Heavier periods than usual
    • A watery and pink or bloody vaginal discharge

    Other symptoms could include:

    • Pain or discomfort in pelvic area
    • Pain during sex (Macmillan, 2021)

    These symptoms may also be due to other conditions, for which you should seek medical advice.

    Diagnosing Cancer of the Womb

    A full medical history will be undertaken and a number of other tests may be carried out before a definite diagnosis can be made. This may include:

    • vaginal examination
    • an ultrasound scan to look at the lining of the womb (endometrium)
    • hysteroscopy/pipelle biopsy - whereby a tiny telescope is passed through the vagina and cervix to look inside the womb and allow biopsies (samples) to be taken of the endometrium and examined.

    Following a confirmed cancer diagnosis, you may require additional investigations such as an MRI scan of your pelvis or a CT scan of your chest, abdomen and pelvis, in order to plan your treatment.

    Once all the information from your investigations has been obtained, your case will be discussed in a multi-disciplinary team (MDT) meeting and a treatment plan will be recommended.

    How treatment is planned

    A team of specialists will meet to discuss you treatment options. The team of specialists are called the MDT and include surgeons (who specialise in Gynaecology cancer surgery), a medical oncologist (doctor specialising in chemotherapy), a clinical oncologist (doctor specialising in radiotherapy), a gynaecology-oncology clinical nurse specialist, radiologists (specialists in x-rays and scans) and pathologists (specialists in studying tissue samples and cells).

    At Liverpool Women’s Hospital, this meeting occurs weekly.

    The MDT will look at many factors when planning your treatment options. These will include:

    • your general health
    • the type and size of the tumour
    • Whether the cancer has spread.

    Stage and Grade of Cancer

    You may hear your cancer being talked about in terms of staging and grading.

    Staging

    The stage of the womb cancer describes:

    • how far the cancer has grown
    • If it has spread from where it started

     

    Grading

    Grading is about how the cancer cells look under the microscope compared to normal cells from your biopsy. The grade helps your doctor to decide about your treatment.

    Grade 1 or low-grade or well differentiated – the cancer cells look similar to normal cells and usually grow slowly and are less likely to spread.

    Grade 2 or moderate or intermediate-grade – The cancer cells look more abnormal and are slightly faster growing.

    Grade 3 or high-grade or poorly differentiated – The cancer cells look very different from normal cells and may grow more quickly.                                       (Macmillan, 2021)

    Treatment Options

    There are four treatment options for cancer of the womb including:

    • Surgery
    • Radiotherapy
    • Chemotherapy
    • Hormone Therapy
    • Targeted therapy and immunotherapy

    Your treatment may involve one or more of these treatment options and your consultant will discuss these options with you during your appointment. Your nurse specialist can support you with any questions you may have regarding your treatment options.

    Surgery

    Surgery is the main treatment for womb cancer.

    The surgeon usually removes:

    • The womb and the cervix (called a total hysterectomy)
    • The fallopian tubes and both ovaries (called a bilateral salpingo-oophorectomy or BSO).

    Your surgeon may also remove:

    • Lymph nodes, close to the womb (pelvic nodes)
    • Lymph nodes higher up in the abdomen (para-aortic nodes)
    • The omentum – a layer of fat and tissue at the front of the abdomen, which covers the organs in the tummy area.

    If your treatment plan is surgery, further information will be provided by your consultant or clinical nurse specialist (CNS) team.

    Radiotherapy

    Radiotherapy treats cancer by using high-energy x-rays.  These destroy cancer cells, while doing as little harm as possible to normal cells. Radiotherapy may be given internally or externally, or as a combination of both.  Some women may have radiotherapy and chemotherapy.

    You may have radiotherapy:

    • After surgery, to reduce the risk of the cancer coming back (called adjuvant radiotherapy)
    • Instead of surgery, if a general anaesthetic or an operation is not suitable for you
    • To try to cure a cancer that has come back after surgery (recurrent cancer)
    • To treat cancer that was not completely removed with surgery.

    More information regarding radiotherapy can be provided by your CNS team.

    Chemotherapy

    Depending on the type and stage of your cancer, your doctor may suggest chemotherapy treatment. Chemotherapy uses antic-cancer (cytotoxic) drugs to destroy cancer cells.  The drugs are carried in the blood and can reach cancer cells anywhere in the body. You are unlikely to require chemotherapy if you have an early stage womb cancer.

    More information regarding chemotherapy can be provided by your CNS team.

    Hormone Therapy

    Hormones are made in the body and help control many body functions. Hormones can affect how cells in the womb lining grow.  Your consultant may suggest hormonal therapy if you:

    • Have womb cancer that has come back after treatment (recurrent cancer)
    • Cannot have surgery or radiotherapy because of other health issues.

    The aim of hormone therapy is to try to shrink the cancer and relieve symptoms.

    Some younger women who want to have children in the future may also be offered hormone therapy instead of a hysterectomy.  After they have had children, they will then have a hysterectomy.

     Targeted therapy and Immunotherapy

    Newer treatments called targeted therapy and immunotherapy may be used to treat womb cancer that has spread. These can help to control the cancer and slow down the growth. Your doctor will send a sample of the cancer cells taken during a biopsy or surgery to be tested. This helps to check which type of treatment may work best for you. Your doctor or specialist nurse will explain if these treatments are suitable.

    Clinical Trials

    Cancer research trials are carried out to try to find new and better treatments for cancer. Trials that are carried out on patients are known as clinical trials. Trials are the only reliable way to find out if a different type of surgery, radiotherapy, chemotherapy, hormone therapy or other treatment is better than what is already available.

    Research into new methods of treating cancer of the womb are going on all the time. You may be asked to consider taking part in a clinical trial, however this is voluntary. Macmillan cancer support has produced a booklet which may be helpful to you to support your decision if approached to participate in clinical research.

    Your feelings

    It is common to feel overwhelmed by different feelings when you are told that you have cancer. Partners, family and friends may also have some of the same feelings such as;

    • Shock and disbelief
    • Fear and anxiety
    • Avoidance
    • Anger
    • Guilt and blame
    • Feeling alone

    There is no right or wrong way to feel. You will cope with things in your own way.

    Talking to people close to you or other people affected by cancer may help. Your CNS team may also be of support to you. There are also specialist services within the community that you may wish to be linked into.

    Talking to children

    Deciding what to tell your children or grandchildren about your cancer is difficult. An open, honest approach is usually best. Even very young children can sense when something is wrong, and their fears can sometimes be worse than the reality.

    How much you tell your children will depend on their age and how mature they are. It may be best to start by giving only small amounts of information, and gradually tell them more to build up a picture of your illness.

    Health and wellbeing after your diagnosis

    Following the diagnosis of cancer some women may experience physical changes, or may wish to make lifestyle changes such as;

    Keep to a healthy weight

    There is some evidence that keeping to a healthy weight after the menopause may help reduce the risk of womb cancer coming back.  It also reduces the risk of some other cancers, heart problems and other illnesses, such as diabetes.

    Eat Healthily

    Eating healthily will give you more energy and help you recover.  Try to eat plenty of fruit and vegetables (five portions a day).  Cut down on red meat and eat more chicken, fish, lentils and beans.

    Be Physically Active

    There is some evidence that doing regular physical activity may help to reduce the risk of womb cancer coming back, and of getting some other cancers.  It also reduces the risk of bone thinning (osteoporosis) in women who had an early menopause.

    Stop Smoking and Drink Sensibly

    If you smoke, giving up is the healthiest decision you can make.  Stopping smoking reduces your risk of heart and lung disease, bone thinning (osteoporosis), and smoking-related cancers.  If you want to stop, your GP can give you advice.

    Your CNS team may also be able to support you with these. Your CNS team can also refer you to other healthcare professionals with expert knowledge such as;

    • Dietician
    • Lymphoedema Practitioner
    • Geneticist
    • Physiotherapist
    • Occupational Therapist via the GP
    • General Practitioner (GP)
    • District Nurse (DN)
    • Community Specialist Palliative Care CNS.
    • Clinical psychology

    Complementary Therapies

    Complementary therapies may be helpful to you and your family. There are many different types such as; Reflexology, Massage, Relaxation, Meditation and Mindfulness, plus many others.

    You may also wish to explore information and coping methods to help yourself. Macmillan cancer support has developed a range of booklets that may also be helpful to you.

    Your CNS team can advise you on appropriate therapies and booklets available to you and give you more information on how to access these.

    Work, help with money worries and benefits

    For some people keeping to your normal routine may be helpful and you may wish to continue working until your treatment starts.  It’s important to do what feels right for you.  It is likely you will need to take time off work during your treatment and for a period of recovery.  If you experience any financial concerns from the effects of cancer, advice is available.

    Your CNS team can offer further advice or referral to a specialist welfare benefits adviser, or you may also prefer to contact the National Macmillan Benefits Advice on 0808 808 0000.

    Macmillan Grants can also be available; they offer a one off payment to people with cancer to cover a wide range of practical needs.  However, these are means tested.  If you wish for more information contact your CNS team or National Macmillan Benefits Advice on 0808 808 0000.

    Your Follow up Care

    After your treatment, you will have regular check-ups. This will be tailored to your specific needs and will be arranged for you every few months. Follow up could be with your gynae-oncologist surgeon, clinical or medical oncologist or stratified follow up in the form of supported self-management. If you have any problems or new symptoms in between appointments, it is important to contact your CNS team as soon as possible who can assess you and arrange an appointment if required.

    Equal Opportunities

    The hospital is committed to promoting an environment which provides equal opportunities for all patients, visitors and staff. If you have special requirements such as dietary needs, interpreter services, disability needs or a preference for a female doctor, please do not hesitate to discuss this with a member of staff who will try to help you.

    Support Networks Available Locally

    Further information, advice and support are available for yourself/partner and family from:

    Lyndale Cancer Support Centre - Knowsley

    Tel: 0151 489 3538

    Email: support@knowsley-cancer-support.co.uk

     

    Sefton Support Group

    Website: seftonsupportgroup.org

    Tel: 01704 879352

    Email: hello@seftonsupportgroup.org

     

    St Helens Cancer Support Group

    Website: sthelenscancersupportgroup.org.uk

    Tel: 01744 21831

    Email: contact@sthelenscancersupportgroup.org.uk

     

    Halton Cancer Support Group

    Website: www.haltoncancersupport.org.uk

    Tel: 0151 423 5730

     

    Macmillan Delamere cancer centre

    Tel: 01928 753502

    Email: Whh.macmillandelamerecancercentre@nhs.net

     

    Isle of Man

    Lisa Lowe centre & Manx Cancer Help

    Website: www.manxcancerhelp.org

    Tel: 01624 679118

    Email: info@manxcancerhelp.org

     

    Liverpool Sunflowers

    Website: www.liverpoolsunflowers.com

    Tel: 0151 726 8934

    Email:  info@liverpoolsunflowers.com

     

    The Holistic Cancer Centre (Wirral)

    Website: www.holisticcancercentre.org.uk

    Tel: 0151 652 9313

     

    Maggie’s: Wirral

    Website: www.maggies.org/our-centres/maggies-wirral

    Tel: 0151 334 4301.

    Email: wirral@maggies.org

     

    Macmillan Information Centres

     

    Royal Liverpool University Hospital - 0151 706 3720

    University Hospital Aintree - 0151 529 4742

    St Helens and Whiston Hospital - 01744 647000

    Broadgreen Hospital - 0151 706 3720

    Southport and Formby – 01704 533024

    Countess of Chester - 01244 364948

    Halton Hospital - 01928 753502

     

    Website information may be obtained from your hospital (www.lwh.nhs.uk), local and national support networks above.

     

    National Resource Organisations for Gynae Oncology Patients

    Macmillan Cancer Support

    89 Albert Embankment London SE1 7UQ

    0808 8080000

    Mon-Fri 9am-8pm

    www.macmillan.org.uk

     

    A National Organisation providing support and written information for anyone affected by any cancer type.

     

     

    Other National organisations;

     

    The Daisy Chain Network

    www.daisynetwork.org.uk

    The Daisy network is a premature menopause support group which offers advice, information and support for women throughout the UK.

     

    The Eve Appeal

    www.eveappeal.org.uk

    The Eve Appeal is the leading UK national charity funding research and raising awareness into the five gynaecological cancers – womb, ovarian, cervical, vulval and vaginal.

     

    Menopause Matters

    www.menopausematters.co.uk   

    For accurate up to date information about the menopause and its treatment options “An easy to use, independent, clinician-led website”.

     

    Womb Cancer Support UK

    www.wombcancersupportuk.weebly.com

    Provide support, advice and information to women who have been diagnosed with womb cancer

     

     

    References

    Blake P, Lambert H, Crawford R (1998) Gynaecological Oncology: A guide to clinical management, Oxford University Press

     

    Cancer Research UK. (2021) Uterine cancer incidence statistic, UK: 2021. Retrieved from

    https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/uterine-cancer#heading-Zero, Accessed [April, 2024]

     

    Macmillan Cancer Support (2021) Understanding womb (endometrial) cancer. 12th edition.

     

    Nordin A (1999) Patient Pictures - Gynaecology, Health Press Ltd, Oxford.

     

    Office for National Statistics. (2021). Cancer registration and analysis service, England: 2021. Retrieved from

    https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/cancerregistrationstatistic, Accessed [April, 2024]

     

     

  • Care after Cancer of the Womb

    The leaflet is detailed below, or you can download the 'Care after Cancer of the Womb' leaflet in PDF.

    Introduction

    You have now completed treatment for cancer of the womb and this leaflet has been written to support you moving forward; with guidance on recovery, getting back to “normal”, your follow up and to help you decide if, or when, you should contact your Gynaecology Oncology Clinical Nurse Specialist (CNS). Your CNS and cancer support worker will be happy to provide further information & advice on all of the aspects mentioned in this leaflet.

    Recovering from Cancer Treatment

    Recovering from surgery

    There is very good evidence that encouraging patients to return to normal as quickly as possible reduces problems and complications. This is called enhanced recovery and you will have received information about this during your hospital admission.

    Your recovery will depend on many things which makes it difficult to give an exact timeline. You should try to do a little more each day and use common sense to determine what is right for you. If you had keyhole (laparoscopic) surgery your recovery should be rapid and the majority of ladies are able to do most things after a few weeks. If you had a traditional, larger incision (laparotomy) recovery can be a little longer. It is usual for it to take several months for you to feel fully recovered.

    Recovering from radiotherapy

    Not all women have radiotherapy for their womb cancer; this section applies to those who have had this treatment. Additional information and advice will be provided by your CNS team.

    The majority of side effects appear within the first or second year after treatment, but can start up to five years later. Treatment can cause the vagina to narrow and shorten, and become less elastic. This can cause discomfort or pain during intercourse or an internal examination. The regular use of vaginal dilators will help prevent vaginal narrowing and their use is recommended even if you are not sexually active. It is not unusual for women to experience a change in their emotions and feelings associated with sex. Most women will have some changes in the way their bladder or bowel works.

    The impact of these side effects varies from person to person. For some women the effects may be minor and will not affect their daily life, some women may need to make changes to their lifestyle to be manage these effects. For a small number of the women the changes may be difficult to cope with. Much can be done to help if this happens; speak to your consultant about this - they can also refer you to a doctor who has a special interest in treating long-term side effects of radiotherapy.

    Managing menopausal symptoms

    Most women who experience womb cancer will have already gone through the menopause. Surgery for womb cancer can include removing the ovaries, which would then cause pre-menopausal women to go through the menopause. 

    Hot flushes and night sweats are the most common menopausal symptoms, but many women also notice weight changes, sleep disturbances, vaginal dryness and changes in libido. If you are suffering from vaginal dryness, vaginal lubricants and moisturisers can be prescribed.

    Hormone Replacement Therapy (HRT) is generally not routinely recommended for women who have been treated for womb cancer. However, if the symptoms are affecting quality of life, the risks and health benefits of starting HRT can be discussed with your consultant. Alternatively some women find herbal remedies and complimentary therapies such as acupuncture, hypnotherapy, massage or aromatherapy helpful for their symptoms.

    Do tell your CNS or GP if menopausal symptoms are troubling you.

    Getting back to “normal”

    Reaching the end of treatment can be a difficult time whilst for others it is a sign that things can start to get back to normal. Many women are able to return to normal, or find and be comfortable with a new normal, but for others this may be more difficult. There is no right or wrong way to feel. Your CNS will be happy to provide more information on all the areas mentioned below.

    Support: Some people prefer not to talk things through, while others get support from speaking about their experience. Details of support groups can be provided by your CNS.

    Work: You can return to work whenever you feel ready to do so. All jobs are different so it’s hard to be specific. Whenever you return, remember it may be a shock to the system to begin with and it can be very useful to return in a phased manner, increasing your work hours over a few weeks.

    Financial concern: You will be eligible for free prescription, if you are not in receipt of this please speak to your CNS. You may also be entitled to certain grants and benefits, this can be individually assessed or you can call the Macmillan helpline on 0808 808 00 00. If any other financial issues are causing you worry, speak to your CNS who can advise who can help.

    Resuming sexual activity: It is vital to abstain from intercourse for 12 weeks following your surgery. It is not uncommon to lose interest in sex. Your treatment may leave you feeling more tired, or you may feel shocked, confused or depressed about being diagnosed with cancer. Try to share your feelings with your partner, if you have one. If you feel you have problems with sex that aren’t getting better with time, you may want to speak to a psychosexual counsellor.

    Travelling abroad: Once you have completed your treatment, there is no reason not to travel abroad. Sometimes patients can experience difficulty in acquiring travel insurance, your local Macmillan Support and Information Centre and the Macmillan website will be able to offer advice. 

    Fatigue: Though fatigue is a common symptoms there are steps you can take to reduce or cope with this. Top tips include – take it easy, conserve your energy, maintain your energy & get moving.

    Exercise: Try to gradually increase your daily activity, with the aim of trying to build up to four or more thirty minute sessions each week of activities that increase your heart rate. If you require further information to access any local programmes please speak to your CNS team.

    Diet: Evidence shows that maintaining a healthy weight, avoiding excessive weight gain, and maintaining levels of physical activity is associated with an improved quality of life and enhanced recovery. Top tips: keep to your meal routines, chose reduced fat, walk off the weight, pack a healthy  snack, look at labels, caution with your portions, think about your drinks & focus on your food.

    Follow up

    Following the end of your treatment you will begin a three year surveillance period, the aim of this is to ensure everything is going well and find out if you have any concerns. You will be stratified into one of the following methods of surveillance; this is decided by the MDT depending upon your final results. 

    Clinical follow up. Traditional Face to face appointments at the hospital with a doctor, during which you will be asked questions about your recovery and any side effects or symptoms you have been experiencing. You may also have an internal examination.

    Supported self-management. Rather than face to face appointments you will instead be supported by a care navigator & your CNS to be in control of your own three year surveillance period. Through an education event and on online portal you will be provided with essential information to help you manage your own follow up and live well beyond cancer. Further information will be provided if this is your follow up method.

    When to contact your CNS

    It is important to remember you will still get coughs, colds, aches and pains and bowel upsets just like anyone else. Your GP will normally be happy to treat such problems. However if they are concerned about your symptoms when they see you, they can contact your CNS who can arrange a clinic appointment.

    For most patients their treatment is effective and their cancer will not come back but sometimes people do have problems. We would like you to contact your CNS if you have any of the following symptoms and they persist for more than two weeks:

    • New onset of bleeding or persistent discharge from the vagina
    • Bleeding from the back passage and/or changes in bowel habit
    • Persistent abdominal bloating
    • Bleeding after sexual intercourse
    • New problems with passing water
    • New persistent aches, pains, discomfort or lumps in your tummy
    • New lower back pain
    • Unexpected weight loss without dieting or exercise
    • Persistent loss of appetite or nausea
    • New persistent breathlessness
    • New swelling of one or both legs

    It is important to remember that even if you have some or all of these symptoms it does not necessarily mean the cancer has come back, but we will arrange to see you in clinic to check you over. Do remember, however, that some of these symptoms can also be caused by other conditions that are completely unrelated to womb cancer, so please do not become unduly anxious while awaiting your review.

    You can contact your CNS team Monday – Friday 08.00-16.00 using the details provided at the end of this leaflet. If you phone and they do not answer please leave a message and contact number on the answerphone and you will be contacted as soon as the CNS picks up your message.

    Worries about cancer returning

    It is entirely natural to feel anxious that your cancer may return and we recognise that this can make you feel very uncertain about the future and lead to difficulties in “getting on with life”. Should there be any cause for concern, you will be reviewed by the clinical team and appointments or appropriate investigations will be organised for you.

    Ways to manage worry and uncertainty about cancer

    • Learn to focus on the ways cancer has made you a stronger person.
    • Talk to family and friends about your concerns
    • Join a support group
    • Write a diary about your fears and feelings.
    • Get involved with an interesting hobby or other things you enjoy doing.
    • Review your priorities towards interesting and meaningful activities.
    • Remember that as time goes by, your worries can fade.
    • If depression, anxiety or any part of the cancer journey becomes overwhelming seek advice from your CNS or GP

    How to contact the Gynaecology Oncology Clinical Nurse Specialist team:

    Monday to Friday 8am-4pm telephone 0151 702 4186.

    If you get the answerphone please leave your name, date of birth, telephone number and a brief message. Your call will be answered within 24 hours, or on the next working day if it is a weekend or bank holiday.

    Support Networks Available Locally

    Further information, advice and support are available for yourself/partner and family from:

    Lyndale Cancer Support Centre - Knowsley

    Tel: 0151 489 3538

    Email: support@knowsley-cancer-support.co.uk

     

    Sefton Support Group

    Website: seftonsupportgroup.org

    Tel: 01704 879352

    Email: hello@seftonsupportgroup.org

     

    St Helens Cancer Support Group

    Website: sthelenscancersupportgroup.org.uk

    Tel: 01744 21831

    Email: contact@sthelenscancersupportgroup.org.uk

     

    Halton Cancer Support Group

    Website: www.haltoncancersupport.org.uk

    Tel: 0151 423 5730

     

    Macmillan Delamere cancer centre

    Tel: 01928 753502

    Email: Whh.macmillandelamerecancercentre@nhs.net

     

    Isle of Man

    Lisa Lowe centre & Manx Cancer Help

    Website: www.manxcancerhelp.org

    Tel: 01624 679118

    Email: info@manxcancerhelp.org

     

    Liverpool Sunflowers

    Website: www.liverpoolsunflowers.com

    Tel: 0151 726 8934

    Email:  info@liverpoolsunflowers.com

     

    The Holistic Cancer Centre (Wirral)

    Website: www.holisticcancercentre.org.uk

    Tel: 0151 652 9313

     

    Maggie’s: Wirral

    Website: www.maggies.org/our-centres/maggies-wirral

    Tel: 0151 334 4301.

    Email: wirral@maggies.org

  • Surgical Treatment for Womb Cancer

    The leaflet is detailed below, or you can download the 'Surgical Treatment for Womb Cancer' leaflet in PDF.

    This leaflet has been produced to provide you, your partner and family with information to assist and support you if you are considering, or have been recommended to have, surgery as part of your treatment for womb cancer. It is not intended to replace verbal information with your surgeon and clinical nurse specialist team. You can also access other information via websites available – see end of leaflet.

    Reasons for having surgical treatment for womb cancer

    The aim of the surgery is to give you the best possible outcome of your treatment management.

    Your doctor will have explained that you have, or they suspect that you may have, cancer of the lining of the womb (also known as uterine or endometrial cancer). You may have pre-cancerous cells known as Atypia Hyperplasia, and Complex Atypia Hyperplasia, which suggests a cancer may be developing.

    What is a hysterectomy?

    A hysterectomy is surgery to remove the womb.

    The surgeon usually removes:

    • The womb and cervix (called a total hysterectomy)
    • The fallopian tubes and both ovaries (called a bilateral salpingo-oophorectomy or BSO)

    The surgeon may also remove:

    • Lymph nodes close to the womb (pelvic nodes)
    • Lymph nodes higher up in the abdomen (para-aortic nodes)
    • The omentum – a fatty apron hanging from the stomach and large bowel, and covering the organs inside the tummy.

    Types of hysterectomy

    A hysterectomy can be done in different ways. Your doctor will talk to you about the most suitable type of surgery for you.

    • Total laparoscopic hysterectomy (also known as keyhole surgery) – the surgeon operates through small cuts in the abdomen. They use small surgical instruments and a thin telescope with a camera on the end. The womb is pushed down through the vagina and sutures are put at the top of the vagina using keyhole instruments.
    • Laparoscopic assisted vaginal hysterectomy – similar to a total laparoscopic hysterectomy but the surgeon performs part of the surgery through the vagina and puts the sutures at the top of the vagina from down below.
    • Abdominal hysterectomy (also known as open surgery) – the surgeon makes one larger cut in the abdomen, this may be up and down, or across your abdomen.
    • Vaginal hysterectomy - the whole operation is performed through the vagina with no tummy cuts.
    • Robotic assisted laparoscopic hysterectomy is similar to total laparoscopic hysterectomy but the surgeon uses a robotic arm to help perform complex manoeuvres during surgery. This is a new development at Liverpool Women’s Hospital.

    Laparoscopic hysterectomy

    In this procedure, 3 or 4 small incisions (5 - 10 millimeters) are made in the abdomen. An instrument known as a laparoscope and other surgical instruments are inserted into the abdomen. The laparoscope is used to visualise the pelvic organs, the womb is then divided from the surrounding tissues and removed through the vagina (laparoscopic assisted vaginal hysterectomy) or through the keyhole incisions (total laparoscopic hysterectomy). For certain subtypes of cancer, a biopsy or removal of the omentum may be undertaken.

    Laparoscopic surgery takes around 2 hours to complete.

    Women who have laparoscopic surgery generally recover quicker and spend less time in hospital, compared to abdominal hysterectomy. Laparoscopic surgery results in very little scarring afterwards. There is likely to be less blood loss during the operation compared with open surgery, and recovery time is less. Inpatient stay is typically 24-36 hours. All risks related to your surgery will be discussed by your surgeon and your consent will be sought.

    Occasionally, if difficulties are encountered during surgery, it may be necessary to complete the operation through a larger cut on the tummy (laparotomy). This leads to a longer hospital stay and a longer recovery.

    Robotic assisted hysterectomy

    Robot-assisted surgery is a laparoscopic (key-hole) technique that uses a robotic console to help your surgeon during the operation. Your surgeon is in the same room, but away from you, and controls the robotic arms to perform the operation. It is important to understand that the robot is not performing the surgery! The surgeon still carries out the procedure, but the robotic console allows more controlled and precise movements during the operation.

    The robot has four arms. One holds a high-magnification 3D camera, which is inserted into your abdomen through one of the keyholes. This allows your surgeon to see inside. The other robotic arms can hold various instruments, which your surgeon will use to carry out the operation. The instruments are smaller than those used for open surgery

    What are the advantages of robotic surgery?

    • Shorter hospital stay
    • Less pain
    • Less risk of wound infection
    • Less blood loss reducing the need for a blood transfusion
    • Less scarring
    • Faster recovery
    • Quicker return to normal activities such as driving

    Occasionally, if difficulties are encountered during surgery, it may be necessary to complete the operation through a larger cut on the tummy (laparotomy). This leads to a longer hospital stay and a longer recovery.

    Abdominal hysterectomy

    The incision (cut) in your abdomen (tummy) is likely to be vertical (up and down). This allows the surgeon to have a clear view of your pelvic organs and they can assess for any signs of the disease spreading. An abdominal hysterectomy can be performed if there is scar tissue present or if the uterus is large.

    Having an abdominal hysterectomy generally requires a longer period of recovery. Inpatient stay is typically 3-5 days. All risks related to your surgery will be discussed by your surgeon and your consent will be sought.

    Vaginal hysterectomy

    This type of surgery is usually recommended to patients that are at high anaesthetic risk and cannot tolerated abdominal or laparoscopic surgery. Inpatient stay is typically 24-48 hours depending on your medical needs. All risks related to your surgery will be discussed by your surgeon and your consent will be sought.

    Your fertility

    If you are pre menopausal, you may wish to know about your fertility options if you have not yet completed your family. We encourage you to discuss this during your consultation appointments to assess what fertility preserving options may be available to you.

    Before your surgery

    You will have an appointment with the pre-operative assessment team, where your fitness for the operation will be assessed. You will be seen by a member of the nursing staff who will ask questions about your previous medical history and will arrange for some tests i.e. blood test. You may also have a chest x-ray and ECG.

    Before your operation we would advise you:

    • Stop smoking, if you smoke, we can direct you to services which will help you with this.
    • Eat a healthy diet and if able, take regular exercise
    • As a part of the Enhanced Recovery programme, the hospital team may ask you to take a carbohydrate drink the night before, and the morning of, your operation.
    • If possible make plans with your family for while in your hospital and arrange for some extra help at home for a couple of weeks, if you will need it.

    If you have any special requirements (physical or practical) for your admission such as a special diet or religious/cultural needs please let the staff know so that all necessary arrangements can be made.

    In hospital – before your operation

    You will be admitted to hospital on the day of your operation, or the evening before. On arrival you will be shown to your bed by a member of the team, the nurse will introduce herself and show you the ward layout, or alternatively you will wait in the admissions lounge until you are taken to theatre.  Before your operation you will not be allowed to eat or drink for several hours, you will be informed of the exact times required. You may also be advised to omit some of your medications on the day of your surgery.

    If you are in hospital the night before you will be asked to shower on the morning of the operation, if you are coming in on the day please do this prior to admission. Please leave any jewellery at home, however if you are unable to, or prefer not to, remove your wedding band a protective tape will be placed over it. Nail varnish and acrylic nails must be removed. You will also need to remove make-up, contact lenses, glasses and false teeth. Please bring into hospital any tablets or medicines you usually take.

    There is usually an opportunity to meet the anaesthetist and surgical team again, please ask if you have any questions.

    You may be given support stockings to wear during and after your surgery and you will also be prescribed an injection to reduce the risk of blood clots in the post-operative period. A member of the ward team will escort you to theatre and they will complete a checklist prior to you leaving the ward. The nurse will stay with you until the theatre staff takes over.

    On arrival in theatre, you will meet the anaesthetist who will put you to sleep with an injection given via a small needle in the back of your hand. When you wake up the operation will have been completed and you will be in the recovery room which is alongside theatre. You will remain here for a period of observation before being brought back to your bed on the ward.

    In hospital – after your operation

    After the operation you will be taken to the recovery room. Once you are awake and your observations are satisfactory, you will be taken back to the ward.

    Eating and Drinking: You will likely be able to eat and drink straight away. You will be offered a drink of water initially, then a cup of tea and something light to eat. If you are not hungry initially, you should drink fluid, your appetite will gradually return.

    Drips and catheter: On return from the operating room you may have an intravenous drip with fluids to keep you hydrated. You will have a catheter (tube) in your bladder to allow drainage of your urine. Usually, these are all removed later that day or the following morning.

    Abdominal and shoulder pain: You can expect pain and discomfort in your lower abdomen for at least the first few days after your operation. If you have laparoscopic surgery you may have some pain in your shoulder. When leaving hospital, you will be provided with painkillers, take them when needed if you have discomfort, don’t wait for pain and do not exceed the stated dose.

    Trapped wind: Following your operation your bowel may temporarily slow down causing air or ‘wind’ to be trapped. This can cause some pain or discomfort until it is passed. Getting out of bed and walking around will help. Peppermint water may also ease your discomfort. Once your bowels start to move, the trapped wind will ease.

    Scars, stitches and dressings: Wounds will be closed either with glue or stitches that dissolve. You may also have a scar at the top of your vagina, closed with stitches that dissolve.

    Washing: The day after your operation, you should be able to have a shower. If the skin is closed with glue instead of sutures you should not have a bath for the first three days. Don’t worry about getting your scars wet – just ensure that you pat them dry or let them dry in the air. Keeping scars clean and dry helps healing and reduces the risk of infection.

    Vaginal bleeding: You may have some vaginal bleeding for 1 to 2 weeks after your operation. This is similar to a light period and is red or brown in colour. Some women have little or no bleeding initially and have a sudden gush of old blood or fluid about 7-10 days later. This usually stops quickly. You should only use sanitary towels, not tampons, as using tampons could increase the risk of infection

    Anaesthetic: The operation is performed under a general anaesthetic i.e. you will be put to sleep. During the first 24 hours you may feel more tired and sleepy than usual. Vaginal hysterectomy may be performed with a spinal anaesthetic in some cases.

     

    Recovering from your operation

    There is very good evidence that encouraging patients to return to normal as soon as possible reduces problems and complications. This is called enhanced recovery. Your recovery will depend on many things which makes it difficult to give an exact timeframe. You should try to do a little more each day and use common sense to determine what is right for you. If you had laparoscopic (keyhole) surgery your recovery should be rapid and the majority of ladies are able to do most things after a few weeks (with the exception of sexual intercourse). If you had a traditional, larger incision (abdominal hysterectomy) recovery can be a little longer. It is usual for it to take several months for you to feel fully recovered.

    During your recovery you should try to:

    • Relax and rest as much as you need to for the first few days but it is important not to remain in bed and to stay mobile, as this reduces your risk of developing blood clots in the legs and lungs. You should be able to do light activities around the house within a few days. It is safe for you to climb stairs the day you go home. Establish a daily routine gradually and keep it up.
    • Eat a healthy balanced diet. This will ensure your body has all the nutrients it needs to aid recovery. A healthy, high fibre diet (fruit, vegetables, wholegrain bread and cereal) with up to 2 litres a day of fluid intake, mainly water, is recommended.
    • Keep your bowels working. Your bowels may take time to return to normal after your operation. Your stool should be soft and easy to pass. You will be given laxatives, which keeps the bowel motion soft, so that there should be less need to strain to open your bowels. You will also be given these to take home.
    • Stop smoking (if you do) as smoking increase the risk of wound infections and breakdown as well as chest infections.
    • Be mobile and wear compression stockings if advised, you may also be prescribed blood thinning injections to take home.

    You will not be able to:

    • do heavy housework, such as vacuuming
    • carry heavy bags of shopping or washing
    • drive
    • have sexual intercourse (for 12 weeks)

    This is because all these activities put pressure on your abdominal muscles and skin. These need time to heal. It will take longer to get over your operation if you put too much strain on the area. You will gradually be able to increase the amount you can do. How long this takes varies depending on the type of operation you had. Women who have keyhole surgery generally recover quicker than those having open surgery. A short walk every day is a good idea. You will get a bit of fresh air and you can gradually go further as you regain your strength. Do take it easy at first though.

    Driving - Your movement and strength must be able to cope with an emergency stop before you return to driving.  You should feel comfortable behind the wheel, with a seat belt over your abdomen. Recommended guidelines suggest 4-6 weeks, or you could check with your insurance company.

    Returning to work - Recovery time is variable for every patients, a degree of tiredness is experienced for some time. Return to work also depends on the nature of your job.  You must feel comfortable at work and be able to cope. You will probably feel tired at first.  You will need to refrain from work for at least 8-12 weeks after open surgery, and 4-8 weeks after a laparoscopic operation, but your GP will give you advice, or if you are attending for a gynaecology out-patient appointment you may discuss this with the doctor. If required a sick note will be provided from the ward doctor.

    It can take longer to recover if there were any complications during your operation, if you are overweight or if you had any health problems before your operation, such as diabetes.

    Below is a guide for your recovery:

     

    Time after operation

    How might I feel?

    What is safe to do?

    1 - 5 days

    You are likely to be in hospital during this time

    • You will have some pain and discomfort in abdomen

    • You may feel sore moving in and out of bed

    • You may have some bleeding like a light period

    • You may feel tired and perhaps feel like a sleep in the afternoon

    Get up and move about

    • Go to the toilet

    • Get yourself dressed

    • Start eating and drinking as usual

    • Wash and shower as normal

     

    4 - 7 days

    You should be at home by now

    • Your pains will slowly be reducing in intensity and you will be able to move about more comfortably

    • You will still tire easily

    • You may feel more emotional than usual

    • Go for short walks

    • Continue with exercises that have been recommended to you

    • Have a sleep or rest in the afternoon if you need to

    1 - 2 weeks

    There will be less pain as you move about and you will find your energy levels slowly returning

    • Bleeding should have settled or be very little

    Build up your activity slowly and steadily

    • You are encouraged to go for longer and more frequent walks

    2 - 4 weeks

    There will be even less pain now as you move more and more

    • You will find your energy levels returning to normal

    • You should feel stronger every day

    Continue to build up the amount of activity you are doing towards your normal levels, but continue to avoid heavy lifting and exercise

     

    6 weeks +

    • You may still feel tired and need to rest more than usual

    All daily activities including lifting

    • Usual exercise, building up slowly

    •  Driving

    • If you had keyhole surgery, you can go back to work when you feel able. If you had open surgery, you may need up to three months off work, depending on your job.

     

    Possible complications

    Although we try to make sure that any problems are kept to a minimum, no surgical operation can be guaranteed free of complications. The operation itself or the general anaesthetic may occasionally give rise to difficulties, which may make your stay in hospital longer, or your recovery slower.

    The risk of developing complications after surgery is increased in some patients. If you smoke you are more at risk of chest infections. If you are overweight or diabetic you are more at risk of developing a wound infection.

    Possible post-operative complications include:

    Frequency and pain passing urine. Occasionally after a hysterectomy you may feel the need to pass urine more frequently. This is a result of slight bruising and swelling of the bladder. Pain relief such as paracetamol is recommended. It is also beneficial to exclude a urine infection of symptoms persist.

    Wind Pain’ / Delayed Bowel Function. The operation can affect your bowel function and cause increased wind pain. This can cause pain in the abdomen, shoulder and back. Eating small quantities, especially of fruit and vegetables, and drinking plenty of fluid will help to re-establish your normal bowel movements. Painkillers and moving about will also ease the discomfort. Occasionally the bowel can ‘go on strike’. This is known as an Ileus. This can cause abdominal pain and distension, vomiting and constipation. If this happens you will have a drip and not be allowed to eat until your symptoms settle, usually within a couple of days. The risk of an ileus is higher if you have had an abdominal hysterectomy.

    Constipation. It usually takes time for your bowels to return to their normal pattern; you will be offered laxatives to take after the operation to minimise any potential problems with bowel function.

    Vaginal Bleeding / Discharge. Some women have a small blood stained vaginal discharge after the operation. Occasionally you can bleed quite heavily. This may be a sign that the wound inside your vagina is not healing, or that there is infection or a blood collection developing. If you are concerned about your bleeding please tell the nurse looking after you and she will assess if it is normal. If this becomes a heavy loss or an unpleasant smelling discharge when you go home, you are advised to contact your GP or the gynaecology ward.

    Infection. With any invasive operation there is a risk of infection. Already mentioned are urine and vaginal infection. There is also a risk of developing a chest infection particularly if you have breathing related illnesses or you smoke. It is important to do deep breathing exercises after your operation. If necessary you may be referred for physiotherapy, or need a course of antibiotics. Another potential area of infection is the abdominal wound (cut on your tummy). For example, redness around the wound or your temperature is raised. A member of the nursing staff will check your dressing each day. Please tell them if you are worried. It is also possible to develop a blood collection behind the wound; this would cause extreme bruising and tenderness.

    Bleeding. It has already been mentioned that there can be bleeding from the vagina and the abdominal wound. Very occasionally patients bleed heavily during surgery and it is necessary to have a blood transfusion. If you have any concerns regarding this please speak with your Consultant or Specialist Nurse.

    Damage to the Bowel or Bladder. Due to the nature of your surgery and the anatomy inside the pelvis there is a small risk of damage to either the bladder, the ureters (tubes to the kidney) or the bowel. The surgeon doing your operation would explain beforehand if you were at an increased risk. If there are any problems during the operation these would be dealt with appropriately and you would be informed after your surgery.

    Adhesions / Hernia. Almost all patients undergoing surgery on their abdomen will develop some adhesions. This is scar tissue which sticks together. They usually cause no symptoms and you are not aware of them. Rarely can they cause persistent pain or problems with bowel function. A hernia is a defect in the scar that can develop, occasionally this requires corrective surgery.

    Developing a Clot. It is well recognised that having major surgery can cause patients to develop Deep Vein Thrombosis is (blood clot in your leg) or Pulmonary Embolism, (blood clot in your lung) and this also is increased for gynaecological cancer surgery. As this is a known risk, all patients having major surgery are advised to wear anti embolism stockings and to have a blood thinning injection (fragmin) each day.

     

    There are additional risks for women who have lymph nodes removed during surgery:

    • Lymphocele (Collection of lymph fluid in a cavity) in 1 - 4 in 100
    • Lymphedema (Swelling of tissues due to obstruction of lymph channels) in 5-15 in 100
    • Lymphangitis (Inflammation or infection of lymphatic channels) in 2 in 100 women
    • Lymphorrhea (Draining of Lymphatic fluid) in 10 -15 in 100 women
    • Nerve injury in the pelvis in 1 in 100 cases.

     

    Formation of blood clots - how to reduce the risk

    You can reduce the risk of clots by:

    • being as mobile as you can as early as you can after your operation
    • doing exercises when you are resting, for example: pump each foot up and down briskly for 30 seconds by moving your ankle move each foot in a circular motion for 30 seconds bend and straighten your legs - one leg at a time, three times for each leg.
    • daily heparin injections (a blood thinning agent) - you may need to continue having these injections daily when you go home; your doctor will advise you on the length of time you should have these for
    • graduated compression stockings, which should be worn day and night until your movement has improved and your mobility is no longer significantly reduced.

    When should I seek medical advice?

    • If it is red and painful skin around your scars: This may be caused by a wound infection. Treatment is with a course of antibiotics.
    • If you experience burning and stinging when you pass urine or need to pass urine more frequently. This may be due to a urine infection. Take a urine sample and contact your GP.
    • If you experience heavy or smelly vaginal bleeding: This may be because of an infection or a small collection of blood at the top of the vagina. Treatment is usually with a course of antibiotics.
    • If you notice one or both of your legs are swollen, or you have shortness of breath or chest pain. There is a small risk of blood clots forming in the veins in your legs and pelvis (deep vein thrombosis) after any operation. Rarely, these clots can travel to the lungs (pulmonary embolism).
    • Increasing abdominal pain. If you have increasing pain along with a temperature (fever), loss of appetite or vomiting, this may be because of damage to your bowel or bladder, in which case you need to come to the hospital.

    Menopause

    Most women who are diagnosed with womb cancer will already have gone through the menopause. Surgery for womb cancer can include removing the ovaries, which would then cause pre-menopausal women to go through the menopause. If you have pre-menopausal, further advice will be given by your doctor and clinical nurse specialist team on how to manage menopausal symptoms.

    Emotional Health

    After your operation, as after any major operation, you may feel depressed and tearful.  This is a normal reaction. as time passes, you will begin to feel better but you may still have ‘up’ days and ‘down’ days.  It may take 6-12 months before you feel you have really adjusted physically and emotionally to what has happened.  This is also normal.  Some women find it helps to talk to their doctor, a specialist nurse or to one of the organisations listed at the back of this booklet.

    Follow up appointment

    You will be given a follow up appointment for approximately 3-4 weeks after your operation.  At this appointment your doctor will have the report from the laboratory about the tissue from the operation.  Depending on these results, you may need further treatment with radiotherapy (x-ray treatment) and/or chemotherapy (drugs).  If this is recommended, your doctor will discuss the treatment individually with you. This consultation may be over the telephone, or face to face in clinic.

    How to contact the Gynaecology Oncology Clinical Nurse Specialist team:

    Monday to Friday 8am-4pm telephone 0151 702 4186.

    If you get the answerphone please leave your name, date of birth, telephone number and a brief message. Your call will be answered within 24 hours, or on the next working day if it is a weekend or bank holiday.

    Support Networks Available Locally

    Further information, advice and support are available for yourself/partner and family from:

     

     Lyndale Cancer Support Centre - Knowsley

    Tel: 0151 489 3538

     

    Sefton Cancer Support Group

    Tel: 01704 879352

    www.seftoncancersupport.org.uk

     

    St Helens Cancer Support Group

    Tel: 01744 21831

     

    Warrington & District Cancer Self-Help Group

    Tel: 01925 453139

     

    Widnes & Runcorn Cancer Support Group

    Tel: 0151 423 5730

     

    Isle of Man

    Manx Cancer Help Association

    Tel: 01624 679554

    www.manxcancerhelp.org

     

    Liverpool Sunflowers

    Liverpool Cancer Support

    Tel: 0151 726 8934

     

    The Wirral Holistic Care Services

    Tel: 0151 652 9313

    www.wirralholistic.org.uk

     

    Maggies Centre Clatterbridge

    0151 334 4301

  • Ovarian Cancer

    The leaflet is detailed below, or you can download the 'Ovarian Cancer' leaflet in PDF.

    Introduction 

    Diagnosis and treatment of any type of cancer can be frightening for most people due to the uncertainty involved. This Ovarian cancer pathway leaflet aims to ease your mind by answering commonly asked questions. However, it will not replace a one-to-one discussion between you and your doctor.

    Diagnosis

    Diagnosis can take time and it can be stressful and emotional, which is one of the difficulties with ovarian (fallopian tube or peritoneum) cancer. However, the time taken for these tests is very important in deciding the appropriate treatment for you. We understand your frustration but remember it is important to do everything correctly, not just quickly.

    Who is involved in my treatment planning?

    A multidisciplinary team (MDT) meeting takes place at Liverpool Women’s Hospital (LWH) every Wednesday where a group of people come together to discuss and make recommendations for your treatment. This multidisciplinary team (MDT) will include:

    • Gynaecology- oncologists from Liverpool Womens’- surgeons who are specialised in the surgical management of gynaecological cancer.
    • Medical and Clinical oncology Consultants from Clatterbridge Cancer Centre- specialists in cancer treatments such as radiotherapy, chemotherapy, and targeted therapy drugs.
    • Consultant Radiologists from Clatterbridge Cancer Centre and Liverpool University Hospital- specialist doctors who analyse X- rays, CT, PET, and MRI scans and are crucial in the ovarian cancer treatment decision.
    • Consultant Pathologists from Liverpool University Hospital - doctors who examine cancer cells under a microscope and advise on the type and extent of cancer.
    • Surgical Oncologists from Aintree Hospital- These oncologists work together with gynae oncology surgeons to perform extensive surgeries (Cytoreductive or interval Debulking surgery), which may be recommended for the treatment of some ovarian cancers.
    • Gynaecology- oncology nurse specialist (Liverpool Women’s hospital, Clatterbridge Cancer centre, Local Hospitals) - You may have already met one of the specialist nurses and they will be your point of contact for communication and support throughout your journey.

    Your multidisciplinary team (MDT) uses national treatment guidelines to decide the most suitable treatment for you. This will be based on the biopsy results, scan findings. There are several routes and combinations for the treatment of ovarian cancer.

    What are the combinations of the treatment?

    How is treatment planned?

    The decision of your cancer treatment will depend upon many things such as the type of cancer, where it is, your current symptoms, how strong your body is, and your thoughts and wishes. Usually, the first decision is whether we look to start with chemotherapy or start with an operation.

     1.Surgery first

    Surgery can be important for the treatment of ovarian cancer, to remove as much visible cancer, as well as to help with the symptoms. On the original scan, if we feel all the disease can be removed by the surgery, we will talk to you about surgery as the first treatment.

    If you require any further treatment, it is usually chemotherapy. We aim to start this approximately 6-8 weeks after your surgery, as you may take some time to recover from surgery, to receive a better effect from chemotherapy.  The aim would be to complete 6 cycles of chemotherapy without any interruption if possible.

     2. Chemotherapy first

     On the original scan, if we feel the disease cannot be removed by the surgery, we will talk to you about chemotherapy as the first treatment. This is because chemotherapy helps to shrink cancer and make surgery easier and more effective (neoadjuvant chemotherapy). Then a medical oncologist from Clatterbridge Cancer Centre will assess you and discuss the options of the treatment and drugs. The risks and benefits of treatment will also be discussed with you in detail to help you make decisions about your treatment.

    Chemotherapy uses anti-cancer (cytotoxic) drugs to destroy cancer cells. This treatment is often used to treat cancer that starts in the ovaries, fallopian tubes, or peritoneum. The drugs are usually given into a vein (Intravenously). Chemotherapy is given as one or more sessions of treatment. Each session takes a few hours, and it can be done as an outpatient, and you do not need a stay in the hospital. After the session, you will have a rest period of a few weeks. The chemotherapy session and the rest period are called a cycle of treatment.

    The length of a cycle depends on the chemotherapy drugs you have. But most cycles are 1 to 3 weeks long. Chemotherapy drugs may cause unpleasant side effects. But these can be well controlled with medicines and usually go away once treatment has finished. Not all drugs cause the same side effects, and some people may have very few. The main side effects of chemotherapy are risk of infection, anaemia (low number of red blood cells), bruising and bleeding, feeling sick, muscle or joint pain, hair loss, numbness or tingling hands or feet, sore mouth, and loss of appetite. Information regarding side effects will be provided at your discussion of chemotherapy with the medical oncologist.

    You usually have three cycles of chemotherapy followed by a CT scan to check how effective the treatment has been. This will then be discussed in the MDT who will make a recommendation as to and if surgery is recommended a surgeon will then talk to you about whether surgery is possible depending on the response of cancer to chemotherapy on a CT scan.  If you have surgery, you will have three cycles of chemotherapy after you have recovered from surgery. If you do not have surgery, you will have another three cycles of chemotherapy (maximum of 6 cycles in total).

    Is there any maintenance treatment available?

    Yes, there is a maintenance treatment with PARP inhibitors and Bevacizumab (Avastin) available in the treatment pathway. These are a type of targeted cancer drugs. The goal of maintenance therapy is to ‘maintain’ a remission or prevent or delay the cancer’s return if the cancer is in remission after initial treatment. This therapy can be used for the treatment of some women with ovarian cancer, fallopian tube cancer or peritoneal cancer. The medical oncologist will be able to tell you more about maintenance treatment.

    What is BRCA? Do I need to consider Tumour Next- HRD (Homologous recombination deficiency) testing?

    The name ‘BRCA’ is an abbreviation for ‘BReast CAncer’ gene, and everyone has these genes. BRCA 1 and BRCA 2 are two different genes normally play a big role in preventing breast cancer. However, in some people these genes become altered and does not function correctly and is called a gene mutation. A woman’s lifetime risk of developing breast and/or ovarian cancer is markedly increased if she inherits a mutated BRCA 1 or BRCA 2. TumorNext- HRD is a paired tumour and germline analysis of BRCA 1, BRCA 2 and 9 other genes in the homologous recombination care pathway. Looking at both the tomour and germline can help to identify ovarian cancer patients who are at an increased risk for other cancers and guide targeted treatment such as with PARP inhibitors. Your medical oncologist will be able to tell you more about this.

    Will I get support with my symptoms?

    Ovarian cancer treatment can take several months to finish and during this period you may experience different cancer symptoms and treatment side effects. The team can help you to reduce the side effects and difficulties during this journey.

    • Treatment of cancer symptoms or treatment side effects- you may experience nausea, vomiting, loss of appetite, fatigue, bladder, or bowel symptoms during the treatment itself. Please speak to your doctor or nurse when the side effects impact your quality of life.
    • Treatment for anaemia- Illness caused by cancer can make you anaemic and that can make your recovery more difficult. As a result, we will take blood tests lookout for anaemia and advice will be given for iron treatment if required. If there is time for this to work, it is a better and safer treatment for anaemia than a blood transfusion.
    • Clinical nurse specialist support- Throughout the whole journey, the clinical nurse specialists are there to help physically and emotionally whenever you are struggling.
    • Advice on chemotherapy- Triage line at Clatterbridge Cancer Centre.

    What is a CA 125 blood test?

    This blood test checks for raised levels of a protein called CA125. It is normal to have some CA125 in the blood, but the level may be higher in women with ovarian cancer. The level of CA125 can also be raised by non-cancerous conditions and by other types of cancer. In early Ovarian cancer, CA125 levels may be normal.

    What is cytoreductive or debulking surgery (IDS)?

    Debulking is a type of abdominal surgery to remove as much cancerous tissue from a patient’s abdomen as possible. This is because ovarian cancer often is not confined to just one area. During this surgery, your surgeon will cut your abdomen. This can be from the top of your abdomen down to your pelvis. This type of surgery allows the surgeon to explore the pelvic and abdominal area for cancer and remove any tumour masses.

    Since surgery aims to remove all sites of disease, we have developed the surgery in conjunction with the Oncology surgeons at Aintree to give us the best chance of removing all sites involved with cancer.

    During the operation, the surgeon will remove your uterus (womb), cervix, fallopian tubes, and ovaries. The surgeon may also need to remove other organs such as the Omentum (fatty lining of the abdomen), peritoneum (filmy covering the abdominal wall), spleen, lymph nodes, sections of the diaphragm (the muscle underneath the lungs) but never the whole diaphragm, lymph nodes (glands), and part of your bowel which may require a stoma.

    As mentioned before, the whole point of surgery is to try to remove all visible cancer remaining. Sometimes this is not possible, there are more areas involved than could be seen on the CT scan, or it involves crucial organs in the body that cannot be removed. If this is the case, we would have to decide at the time of the operation what is the right thing to do. It can be to remove what we can or stop the operation and not to continue. Whilst it is uncommon it can happen.

    Diagram A- Internal abdominal Organs

    *Omentum- A piece of fatty tissue that lies over the abdominal organs

    *Peritoneum- A lining of the abdominal cavity

    Diagram B- Internal abdominal organs

    Diagram C- Side view of reproductive organs

    (Images sourced from the book called Yes doctor. But what does that mean?)

    Will I need a stoma?

    When ovarian cancer is more advanced at the time of diagnosis it will have spread to the surface of the bowel (intestine). In these cases, to make sure that as much of cancer as possible is removed, your surgery may include removing a part of the bowel. Sometimes the affected area of the bowel can be removed, and the two ends joined back together. But if it is not possible, your body will need a new way to get rid of faeces (poo). In these cases, the surgeon will make an opening through your abdominal wall and bring the end of the bowel through the skin. This is called the creation of an ostomy or stoma (an artificial opening). The faeces (poo) are then collected in a stoma bag which is attached to your abdomen (tummy). This may well be temporary (several months).

    Before your operation, a stoma nurse or a consultant will mark your abdomen with a skin marker pen (known as siting). This is to guide your surgeon to the best possible place to bring out the stoma if it is necessary. Your stoma nurse will also discuss with you, in more detail, what having a stoma will involve and answer any questions that you may have.

    If a stoma is created in your case, you may get an appointment with a Surgical Oncologist at Aintree hospital for follow up.

    Is a stoma permanent?

    In many cases of ovarian cancer, a stoma is intended to be temporary. This means that in the future you may be able to have further surgery that means you no longer have the stoma. It is important to remember that all cases are different, and you would need to discuss your case with your surgeon and the team.

    Before surgery

    You should carry on taking your usual medications unless told otherwise. We strongly advise that you stop smoking before your surgery. If you develop an illness before your surgery date or have any questions, please contact your Nurse specialist.

    Pre-Operative assessment

    You will have a pre-operative assessment before your surgery at Liverpool University Hospital (RLUH). During this assessment, your fitness for general anaesthetic and surgery will be checked. This will include recording a full medical history, any current medication, and arranging any investigations needed. Please tell the nurse if you have had problems with any previous surgery, anaesthetic or if you have any allergies- this is very important.

    You will also meet the pre-habilitation team at Aintree University if surgery is possible. Pre- Habilitation- Being fit physically and mentally can help reduce the side effects of all treatments, therefore, speeding up recovery. The pre-habilitation team will offer advice and support about maintaining fitness if you are having surgery at Liverpool University hospital.

    Will I have to sign a consent form?

    You will be asked to sign a consent form giving your consent to the surgery. The consent form is a written record of the consent discussion you have with your doctor and makes it clear what operation you have consented to. Your surgeon will only perform surgery for which you have specifically consented. The only exception being if a further procedure becomes necessary to save your life or save you from serious harm. The medical terms commonly used on the consent form are:

    • Total abdominal hysterectomy- removal of the womb which includes the cervix (neck of the womb).
    • Oophorectomy- removal of one ovary
    • Bilateral- oophorectomy- removal of both ovaries
    • Salpingectomy- removal of one fallopian tube
    • Bilateral salpingectomy- removal of both fallopian tubes
    • Bilateral salpingo-oophorectomy- removal of both ovaries and fallopian tubes
    • Splenectomy- removal of the spleen
    • Omentectomy- removal of part or all of the omentum
    • Diaphragmatic striping- removal of part or all of the lining of the diaphragm muscle
    • Peritoneal stripping (removal of the peritoneum)
    • Lymphadenectomy (removal of lymph nodes)
    • Bowel resection- removal of part of the large or small bowel
    • Stoma formation- bringing the bowel through the abdominal wall to form an opening on the tummy.

    Day of your surgery

    An anaesthetist and your surgeon (or a member of the team) will explain to you what will happen during your operation and check if you have any questions or if anything has changed.

    We want you to fully understand why you are having the surgery and the possible risks involved. You will be asked to sign a consent form if you have not already done so, and you will have the opportunity to ask any questions that you may have.

    During the surgery

    All surgeries are carried out under a general anaesthetic (while you are asleep). A narrow plastic tube called a cannula will be inserted into a vein in your arm or hand using a needle. This is used to give you fluids and medications. Before having the general anaesthetic, your anaesthetist may give you an epidural (small plastic catheter) into your spine (backbone) to help control pain after your surgery. And also, an arterial line (a plastic tube) will be introduced into one of your radial arteries (vessel supplying blood to arm) to monitor your blood pressure continuously while you are in ITU/HDU after the surgery. After you have been given a general anaesthetic and you are asleep, a catheter (a tube to drain urine) will be inserted into your bladder.

    While under general anaesthetic your surgeon will make a cut on your abdomen which can be from the top of your abdomen down to your pelvis.

    At the end of the surgery, rectus sheath catheters (plastic tube) will be inserted into each side of your abdominal incision to provide continuous pain relief after the surgery.

    All the organs and cancer removed during your operation will be sent to the laboratory for examination to assess your response to chemotherapy.

    The wound will be closed with dissolvable stitches or staples. The procedure can take 4-6 hours, but you should expect to be in the theatre and recovery for longer.

    After the surgery

    You will normally wake up in the operating theatre recovery area, but you may not remember much. You will then be transferred to the department of critical care (ITU/HDU). You will be moved to the ward once you are stable, and the critical care team is happy with your recovery.

    Risks

    Minor risks

    • Infections (such as wound, chest, or bladder)
    • Bruising to any wound on the abdomen
    • Haematoma (blood collecting in the wound)
    • Hernia
    • Adhesions (tissues sticking together)
    • Constipation
    • Delay in chemotherapy.

    Major risks

    • Pain- Pain after surgery is common but can be managed and controlled. A particular issue after surgery for ovarian cancer can be painful breathing. Commonly the peritoneum (the internal skin) overlying the diaphragm (the muscle beneath the lungs) is involved in the cancer that needs The diaphragm itself can often need removal as well, and both of these surgeries can mean breathing is difficult and painful after surgery. It does get better but can slow your recovery.
    • Nausea/ vomiting- surgery and anaesthetics and many of the medicines used can make you feel sick. Please tell your anaesthetist if it has been a problem for you in the past, and they can try to reduce the nausea the treatment causes.
    • Ileus- Surgery in the pelvis and bowel can lead the bowel to stop functioning for some time after the surgery. If this goes on for several days, we may need to drain the stomach with a tube through the nose (NG tube- nasogastric tube) and consider feeding you through a vein. This normally resolves within a few days but can go on for a couple of weeks or more.
    • Poor appetite- As a response to everything else that has happened (pain, nausea, sickness, etc) it is not surprising your appetite may not be normal for some weeks.

    We will commonly ask the Dietician to talk to you about how to get your appetite back and also about the best foods to eat whilst you are recovering.

    • Blood clots (DVT/PE)- Cancer, surgery, and immobility after the surgery all put you at risk of a blood clot either in your leg or lung. The support stockings and the injections we give you after the surgery reduce the risks of a blood clot but not remove it entirely. Please tell your doctor if you get a swollen leg or sudden onset of breathlessness.
    • Slow recovery- The healing after a major surgery takes time. This can be very frustrating. Allow yourself time to recover; it will happen. But if you rush and push your body too hard, you may well go backward. Listen to your body and try to make your progress gradually.

    How long will I be in Hospital?

    Recovery from such a major surgery takes time; the length of hospital stay can be between 4-14 days depending on your surgery. And steady recovery after this at home. Most people feel very tired and lacking in energy after the operation and this may take several weeks to slowly improve. A lack of concentration is also common and can take some time to come back.

    After surgery, it is crucial to get you fit again as soon as possible either for the remainder of your chemotherapy or to start the chemotherapy. The fitter you are before the surgery and the fewer the complications you get after the surgery, the quicker you will recover and get on to the next phase of your treatment. We will encourage you to move around as early as possible to help you to recover quickly.

    Going home

    You may still have some discomfort when you leave the hospital, but you will be given a supply of pain relief medication regularly for the best effect. And also, you will be given a supply of daily anticoagulant (blood-thinning medication) to reduce the risk of a blood clot (DVT/PE). A nurse will show you how to inject yourself. If you are not able to inject yourself, they will show a relative or friend how to do this. Or they will arrange for a district nurse to do it for you.

    You may have some light vaginal bleeding (spotting) for up to 6 weeks after the surgery. This is normal but if the bleeding becomes heavy and has an offensive smell or if you are concerned, please contact your GP and let your oncologist know during your chemotherapy assessment.

    Next Appointments

    Around three weeks after your surgery a post-operative check will be undertaken either by telephone or face to face with the surgical team.  At this time results will be discussed following your surgery and an update sent to the Clatterbridge Cancer Centre on your progress.  Following this appointment you will have an appointment, either face to face or on the telephone, with the Clatterbridge team to discuss resuming your chemotherapy and any further treatment.

    You will also have a follow up holistic assessment by your surgical nurse specialist, on the telephone.  You may also receive a follow up from Mr Skaife if you have a stoma or if this is indicated.

    Returning to normal

    You may feel more tired in the weeks following your surgery. Further chemotherapy treatment can also make you feel tired. You might experience slight aching discomfort at the wound site. This can persist for some months, but most women can resume light daily activities and tasks within 6-12 weeks.

    What about my sex life?

    The area at the top of the vagina, where the cervix was, will have had stitches. The wound will need about 12 weeks to heal before intercourse is resumed. You will tend to know when you feel ready to resume intercourse. You should find that there is no alteration in the sensation, but there may be slight discomfort if you are over-enthusiastic. Please ask your specialist nurse or GP for advice if you experience any pain.

    When can I drive?

    You will be able to travel as a passenger, but if you are travelling long distances, please make sure that you stretch your legs regularly.

    You should not drive until you feel able to perform an emergency stop comfortably and are not taking regular pain medication. This usually means 6 weeks without driving. We recommend you discuss this with your insurance company.

    Once treatment is complete

    After your treatment, you will have regular check-ups, which are usually every 3- 6 month to start with. Your doctor and nurse will ask you how you are recovering from the treatment. They will ask if you have any new symptoms. If needed, you may have scans or blood tests. You can talk to your doctor or nurse about any problems or worries at these check-ups. But if you notice new symptoms or have problems between appointments, contact them for advice sooner.

    • CA 125- CA 125 (ovarian tumour marker) blood tests are sometimes done as part of your follow up, but this is not always needed. A rising CA 125 level may be a sign that cancer has returned and help us to consider further tests such as a CT scan. But for most people, it is just as effective to wait for symptoms of cancer to develop and then start treatment again.
    • Supported self-management- Coming into the hospital for an appointment for a blood test, is a very ineffective way to assess you. However, this method has been developed to keep you out of the hospital but still keeping you under proper review. Please talk to your specialist nurse about this.

     

     

     

     

     

     

     

     

     

     

     

     

  • An Explanation of the Care in the Last Hours or Days of Life for Families and Carers

    The leaflet is detailed below, or you can download the 'An Explanation of the Care in the Last Hours or Days of Life for Families and Carers' leaflet in PDF.

    The doctors and nurses will have explained to you that there has been a change in your relative’s condition. They believe that the person you care about may now be dying and in the last days or hours of life. This is a difficult and emotional time for everybody.

    The dying process is unique to each person; it is important that we plan our care for your relative or friend according to their individual needs and wishes, your relative or friend may have already considered what is most important to them.

    You will also be involved in the discussion regarding the plan of care with the aim that you fully understand the reasons why decisions are being made. If your relative’s condition improves, then the plan of care will be reviewed and changed.

    Nothing can take away the feelings of grief, however having information may help you cope at this anxious time. In most cases there are common changes which help to suggest that a person is dying.

    This leaflet will hopefully explain these changes and answer some of your questions. However, if you have any more questions, please ask the nurses and doctors caring for your relative.

    Reduced need for food and drink

    Your relative may stop eating and drinking. This is a normal process during the last days of life; and it can sometimes be hard to accept.  Your relative will be supported to eat and drink for as long as they want / are able to. The ward team will assess if your relative is alert and awake enough to eat and drink safely. This is not without an element of risk if the person is weak. This is often referred to as “risk feeding” and will be fully explained if this is to be considered.

    If your relative is in hospital and cannot take fluids by mouth, a drip may be considered. Sometimes the benefits of a drip have to be weighed against the risks and will only be used where it is helpful and not harmful. These decisions will be explained to you.

    However, caring can be continued in many other ways, such as providing good mouth care and moistening of the lips which can help your relative feel more comfortable.

    Changes in breathing

    When someone is dying, their need for oxygen may lessen and the way they breathe may change.

    Your relatives breathing may pause for a while and then start again. They will use different muscles to breathe, which means their breathing may look different, the abdominal (stomach) muscles will take over the work – the abdomen rises and falls instead of the chest.

    Sometimes breathing can sound noisy or “rattling” largely due to a build-up of mucous because your relative is no longer able to cough or clear their throat. This can sound upsetting but is usually not distressing for them. If breathlessness is causing your relative distress, small doses of medicines can be given to help relax the breathing and relieve their distress.

    Changes in consciousness and sleepiness

    ‘Withdrawal from the world’ is a gradual process. Your relative may spend more time sleeping and may be drowsy when awake. This is part of a natural process. Eventually, your relative will become unconscious and can remain in this state for a long time, for others, it is shorter.

    During the process of dying, your relative’s skin may become pale and moist. Their hands and feet can feel very cold and sometimes look bluish in colour. They may still be aware of that family and friends are still with them so you can still talk to them.

    Medication/treatment

    In partnership with your relative and those identified as important to them, the nurses and doctors will develop an individualised plan of care to decide the care and treatments that will be of benefit.  Investigations such as blood tests, blood pressure and temperature monitoring may be discontinued and medication will be reviewed, and any that are not helpful at this time may be stopped and some new medicines may be prescribed for treating symptoms such as breathlessness, pain, agitation, nausea and vomiting. The ward team will discuss the use of these medicines including any potential side effects to you. If swallowing medication becomes difficult, it may be given in a way that is easier for your relative, such as by an injection or sometimes by a continuous infusion using a small pump called a syringe pump. The nurses will aim to manage your relative’s symptom as best as possible.

    Religious/Spiritual Needs/Comfort measure

    It is very important to make sure all the staff who are providing care meet you and your relative’s needs. This may include religious traditions, or rituals. Some families and friends may want to be involved in assisting the nurses with comfort and care, bringing in personal belongings such as blankets, photos and playing some of your relative’s favourite music. If you would like to be involved, please tell the nurses.

    Caring for you and your relative is important to us. The nursing team, doctors, specialist palliative care team and pastoral support team will provide support and care to you both. Please ask any of the team if you require any further support.

     

     

     

     

  • Care After Cancer of the Cervix

    The leaflet is detailed below, or you can download the 'Care After Cancer of the Cervix' leaflet in PDF.

    Introduction

    You have now completed treatment for cancer of the cervix and this leaflet has been written to support you moving forward; with guidance on recovery, getting back to “normal”, your follow up and to help you decide if, or when, you should contact your Gynaecology Oncology Clinical Nurse Specialist (CNS). Your CNS and cancer support worker will be happy to provide further information & advice on all the aspects mentioned in this leaflet.

    Recovering from Cancer Treatment

    After treatment, you’ll probably be keen to get back to a sense of ordinary life. However, you may still be coping with the side effects of treatment and with some difficult emotions. Recovery takes time, so try not to be hard on yourself and you may find you have ‘up’ and ‘down’ days for a while afterwards.

    Recovering from surgical treatment for cancer of the cervix

    There is very good evidence that by encouraging patients to return to normal as quickly as possible following surgery, reduces problems and complications. This is called an enhanced recovery and you will have received information about this during your hospital admission. Your recovery will depend on many things which makes it difficult to give an exact timeline. We encourage you to try to do a little more each day and use self-awareness to determine what is right for you. Another factor in your recovery is the type of surgery you had. If you had a large loop excision of the transformational zone (known as LLETZ procedure) or a cone biopsy, your recovery should be quicker, and most women are able to do most things after a few weeks. If you had a larger surgery such as a trachelectomy or radical hysterectomy laparotomy and had your pelvic lymph nodes removed, recovery can take a while longer. Usually, this type of surgery can take several months for you to feel fully recovered. Information regarding your recovery will have been provided to you prior to your discharge from hospital. However, if you do have any questions, you can contact your CNS and cancer support worker.

    Depending on your diagnosis, further treatment may be required, this being adjuvant (additional) chemoradiation. This is given to help reduce the risk of the cancer coming back. Not everyone needs adjuvant (additional) treatment after surgery. If the cancer has spread to your lymph nodes or if the cancer was close to the edge of the resected tissue.  If required, we would aim to start adjuvant treatment approximately six weeks after your surgery. This allows time for recovery after your surgery.

    The impact of cervical cancer

    Being diagnosed with cervical cancer, being treated, and reaching the end of treatment can have both an emotional and physical impact on you. For some it is a sign that things can start to get back to “normal”. Many women return to a state of normality or can find and be comfortable with a new normal, yet for others, this may be more difficult. There is no right or wrong way to feel. Your CNS will be happy to provide more information on all the areas mentioned below.

    Emotional Impact

    Coping with a cervical cancer diagnosis and treatment can be hard. You may have many different emotions, from numbness, shock, or fear, to anger, guilt, or sadness. It may leave you feeling out of control of your life and future. It is often more difficult to deal with the unknown, so having the right amount of information and support may help you feel more in control. Your CNS is happy for you to talk through any concerns or questions when you have them. After treatment, you may feel relieved that it’s over but also nervous about the future. It is common to feel anxious that the cancer may come back. Knowing the risks and what options are available if this happens can help you to cope with any fears.

    Physical Impact

    Fatigue: Though fatigue is a common symptom after surgery, radiotherapy and chemotherapy, there are steps you can take to reduce and cope with this. Top tips include – take it easy, conserve your energy, maintain your energy & get moving.

    Scaring: Depending on the type of surgery you have; you may have some scars. These should fade over time. Some scars may cause localised numbness which should improve after a few months. If you have any problems with scaring speak to your surgical team and CNS.

    Lymphoedema: Lymphoedema is more likely to develop after surgery that has involved the removal of pelvic lymph nodes and in women who have radiotherapy following cervical cancer surgery which included the removal of pelvic lymph nodes. Lymphoedema is when your leg, legs, pelvic area or both swell with fluid that struggles to drain on its own. Your lymph nodes job is to drain lymphatic fluid (waste fluid from cells) so it can be removed by your body. When lymph nodes are removed this can cause a build-up of fluid whilst your body compensates for the lymph nodes that have been removed. It is common that fluid can accumulate in the tops of your thighs following surgery and will improve over time, yet for some women this may be more persistent. There are ways to reduce the risk of lymphoedema and to manage it through exercise, massage, and light compression hosiery. If you are concerned about lymphoedema, speak to your CNS who can offer you more advice.

    Changes to your bowel or bladder: After surgery and treatment, some people experience changes in how their bowels, bladder or both work. Sometimes these changes only last for a short period of time and eventually improve. However, for some people, these changes can be more persistent, may get worse after treatment or may only develop a while after treatment has finished, known as a late effect from treatment. If you experience bowel or bladder changes, it is important to speak to your CNS who can help you get the right support.

    Menopause: If you have not already gone through menopause and during surgery you have your ovaries removed, early menopause may be triggered, known as a surgically induced menopause. Having radiotherapy may also mean you are more likely to go through menopause early.

    Hot flushes, night sweats and mood changes are the most common menopausal symptoms, but many women also notice weight changes, sleep disturbances, vaginal dryness, and changes in libido. Hair and skin can become dry, and your joints may be painful. In time, low oestrogen levels can cause osteoporosis (thinning bones) and heart disease.

    If you are suffering from vaginal dryness, vaginal lubricants and moisturisers can be prescribed.

    Most women with cervical cancer can safely take Hormone Replacement Therapy (HRT) for the management of menopausal symptom and can prevent osteoporosis and there are many different forms of HRT available such as tablets, patches, and creams. HRT, however, may not be suitable for all women with cervical cancer so you should discuss taking HRT with your medical team or a menopause specialist. Alternatively, some women find changes to lifestyle, herbal remedies, and complimentary therapies such as acupuncture, hypnotherapy, massage, and aromatherapy helpful for their symptoms. Do tell your CNS or GP if menopausal symptoms are troubling you.

    Changes to your vagina:  the upper part of your vagina is removed as part of your surgery and does not usually have any impact on your sex life and relationships. If this affects, you sex life and relationships please contact you CNS who can support you with this.

    Changes to your sex life: Following your surgery, it is strongly advised that you abstain from penetrative intercourse for 12 weeks. It is important that your internal anatomy, following the removal of your cervix, has time to fully heal. Your sex life may also change following your treatment for cancer of the cervix because of physical and emotional factors and, it is not uncommon to lose interest in sex and intimacy following your treatment for cancer. Treatment may have triggered menopause or caused vaginal stenosis and sex may be more uncomfortable. You may feel differently about yourself or your sexuality and have other physical changes such as scars and hair loss that affect your body image which may impact on your relationships. We encourage you to share your feelings if your feelings towards sex and intimacy have altered and take time to introduce intimacy if you wish to do so. You can discuss this privately with your CNS for advice. If you feel you have ongoing problems with sex and intimacy that are not getting better with time, you may wish to consider speaking to a psychosexual counsellor. 

    Other concerns

    Support: Some people prefer not to talk things through, while others get support from speaking about their experience. Details of support groups can be provided by your CNS, and some are listed at the end of this leaflet.

    Exercise: Try to gradually increase your daily activity, with the aim of trying to build up to four or more thirty-minute sessions each week of activities that increase your heart rate. If you require further information to access any local programmes, please speak to your CNS team.

    Diet: Evidence shows that maintaining a healthy weight, avoiding excessive weight gain, and maintaining levels of physical activity is associated with an improved quality of life and enhanced recovery. Top tips: keep to your meal routines, chose reduced fat, walk off the weight, pack a healthy snack, look at labels, caution with your portions, think about your drinks & focus on your food.

    Work: You can return to work whenever you feel ready to do so. All jobs are different so it’s hard to be specific. Whenever you return, remember it may be a shock to the system to begin with and it can be very useful to return in a phased manner, increasing your work hours over a few weeks.

    Financial concern: You will be eligible for free prescription, if you are not in receipt of this please speak to your CNS. You may also be entitled to certain grants and benefits; this can be individually assessed, or you can call the Macmillan helpline on 0808 808 00 00. If any other financial issues are causing you worry, speak to your CNS who can advise who can help.

    Travelling abroad: Once you have completed your treatment, there is no reason not to travel abroad. Sometimes patients can have trouble in acquiring travel insurance. Your local Macmillan Support and Information Centre and the Macmillan website will be able to offer advice. 

    Follow up after treatment

    Clinical follow up. Once you have completed your treatment, you will begin a five-year surveillance period. The aim of this is to ensure everything is going well post treatment and to explore any of your concerns. You will have traditional follow up appointments every 3-6 months. During your appointments you will be asked questions about your recovery and any side effects or symptoms you have been experiencing. You may also be offered a pelvic examination and internal examination. If you are experiencing problems or are worried about anything between your appointments, you are encouraged to contact your CNS team who can assess you and if needed, can bring you back in for a clinic appointment sooner.

    When to contact your CNS

    It is important to remember you will still get coughs, colds, aches and pains and bowel upsets just like anyone else. Your GP will normally be happy to treat such problems. However, if they are concerned about your symptoms when they see you, they can contact your CNS who can arrange a clinic appointment.

    We would like you to contact your CNS if you have any of the following symptoms and they persist for more than two weeks:

    • Bleeding from the vagina
    • Bleeding from the bowel/ back passage
    • Bleeding after sexual intercourse.
    • Bowel changes, if this is new e.g., diarrhoea or constipation.
    • Problems passing urine (if this is new).
    • New aches and pains or lumps in abdomen.
    • Vaginal discharge.
    • Weight loss without dieting or exercise.
    • Feeling generally unwell.
    • Swelling of the legs.

    It is important to remember that even if you have some or all these symptoms it does not necessarily mean the cancer has come back, but we will arrange to see you in clinic to check you over. Do remember, however, that some of these symptoms can also be caused by other conditions that are completely unrelated to cervical cancer.

    You can contact your CNS team Monday – Friday 8am – 4pm using the details provided at the end of this leaflet. If you phone and they do not answer, please leave a message and contact number on the answerphone, and you will be contacted as soon as the CNS picks up your message.

    Worries about cancer returning

    It is entirely natural to feel anxious that your cancer may return, and we recognise that this can make you feel very uncertain about the future and lead to difficulties in “getting on with life”. Should there be any cause for concern, you will be reviewed by the clinical team and appointments, or appropriate investigations will be organised for you.

    Ways to manage worry and uncertainty about cancer

    • Learn to focus on the ways cancer has made you a stronger person.
    • Talk to family and friends about your concerns
    • Join a support group
    • Write a diary about your fears and feelings.
    • Get involved with an interesting hobby or other things you enjoy doing.
    • Review your priorities towards interesting and meaningful activities.
    • Remember that as time goes by, your worries can fade.
    • If depression, anxiety or any part of the cancer journey becomes overwhelming seek advice from your CNS or GP

    How to contact the Gynaecology Oncology Clinical Nurse Specialist team:

    Monday to Friday 8am-4pm telephone 0151 702 4186.

    If you get the answerphone please leave your name, date of birth, telephone number and a brief message. Your call will be answered within 24 hours, or on the next working day if it is a weekend or bank holiday.

    Support Networks Available Locally

    Further information, advice and support are available for yourself/partner and family from:

    Lyndale Cancer Support Centre - Knowsley

    Tel: 0151 489 3538

    Sefton Cancer Support Group

    Tel: 01704 879352

    www.seftoncancersupport.org.uk

    St Helens Cancer Support Group

    Tel: 01744 21831

    Warrington & District Cancer Self-Help Group

    Tel: 01925 453139

    Widnes & Runcorn Cancer Support Group

    Tel: 0151 423 5730

    Isle of Man

    Manx Cancer Help Association

    Tel: 01624 679554

    www.manxcancerhelp.org

    Liverpool Sunflowers

    Liverpool Cancer Support

    Tel: 0151 726 8934

    The Wirral Holistic Care Services

    Tel: 0151 652 9313

    www.wirralholistic.org.uk  

    Maggie’s Cancer support Wirral               

    Centre Clatterbridge

    Tel: 0151 334 4301

    www.maggies.org

    Jo’s Cervical Cancer Trust                 

    Tel: 0808 802 800                                                                     

    www.jostrust.org.uk                                                                         

    Macmillan

    Tel: 0808 808 0000

    www.macmillan.org.uk

    Menopause Matters                        

    www.menopausematters.co.uk                  

    The Daisy Network 

     www.daisynetwork.org.uk

     

  • Care After Cancer of the Ovary

    The leaflet is detailed below, or you can download the 'Care after cancer of the Ovary' leaflet in PDF.

    Introduction

    You have now completed treatment for cancer of the ovary. This leaflet has been written to support you moving forward; with guidance on recovery, getting back to “normal”, follow up and to help you decide if, or when you should contact your Gynaecology Oncology Clinical Nurse Specialist (CNS). Your CNS and cancer support worker will be happy to provide further information and advice on all aspects mentioned in this leaflet.

    Recovering from cancer treatment

    After treatment you will probably be keen to get back to a sense of ordinary life. However, you may still be coping with the side effects of treatment and with some difficult emotions. You may find you have ‘up’ and ‘down’ days for a while afterwards. Recovery takes time, so try not to be hard on yourself.

    Recovering from surgical treatment for ovarian cancer

    There is very good evidence that by encouraging patients to return to normal as quickly as possible following surgery, reduces problems and complications. This is called an enhanced recovery and you will have received information about this during your hospital admission. Your recovery will depend on many things which makes it difficult to give an exact timeline. We encourage you to try to do a little more each day and use self-awareness to determine what is right for you. Another factor in your recovery is the type of surgery you had. If you had keyhole (laparoscopic) surgery your recovery should be quicker, and most women are able to do most things after a few weeks. If you had a traditional, larger incision (laparotomy) recovery can be a little longer. Usually this can take several months for you to feel fully recovered. Information regarding your recovery will have been provided to you prior to your discharge from hospital. However, if you do have any questions, you can contact your CNS and cancer support worker.

    Depending on your diagnosis, further treatment may be required, this being adjuvant (additional) chemotherapy. Not everyone needs adjuvant (additional) treatment after surgery, and this will be considered by your oncology team. Adjuvant chemotherapy would start approximately six weeks after your surgery. This allows time for recovery after your surgery.

    Chemotherapy

    Not all women will have or require chemotherapy for the treatment of their ovarian cancer; this is decided based on your ovarian cancer diagnosis.

    Chemotherapy can be given after surgery, known as adjuvant (additional) chemotherapy or in some cases, is given before and after surgery, known as neoadjuvant chemotherapy.

    This section applies to you if you have had, or you are going on to have chemotherapy. Additional information and advice will be provided by your medical oncologist and CNS team.

    There is a risk of recurrence with certain types of ovarian cancers, and we would strongly advise you to be aware of any new changes or symptoms. If you notice new symptoms or have any problems between appointments, contact your CNS team for advice.

    Sometimes CA125 blood tests are done as part of your follow-up but this is not always needed. A rising CA125 level may be a sign that the cancer has returned and will help us to consider further tests such as a CT scan to investigate this further and assess whether further treatment should be considered.

    The impact of ovarian cancer

    Being diagnosed with ovarian cancer, being treated for ovarian cancer and reaching the end of treatment for ovarian cancer can have both an emotional and physical impact on you. For some it is a sign that things can start to get back to “normal”. Many women return to a state of normality or can find and be comfortable with a new normal, yet for others, this may be more difficult. There is no right or wrong way to feel. Your CNS will be happy to provide more information on all the areas mentioned below.

    Emotional Impact

    Coping with an ovarian cancer diagnosis and treatment can be hard. You may have many different emotions, from numbness, shock, or fear, to anger, guilt, or sadness. It may leave you feeling out of control of your life and future. It is often more difficult to deal with the unknown, so having the right amount of information and support may help you feel more in control. Your CNS is happy for you to talk through any concerns or questions when you have them. After treatment, you may feel relieved that it’s over but also nervous about the future. It is common to feel anxious that the cancer may come back. Knowing the risks and what options are available if this happens can help you to cope with any fears.

    Physical Impact

    Fatigue: Though fatigue is a common symptom after surgery, radiotherapy and chemotherapy, there are steps you can take to reduce and cope with this. Top tips include – take it easy, conserve your energy, maintain your energy & get moving.

    Diet: Evidence shows that maintaining a healthy weight, avoiding excessive weight gain, and maintaining levels of physical activity is associated with an improved quality of life and enhanced recovery. Top tips: keep to your meal routines, chose reduced fat, walk off the weight, pack a healthy snack, look at labels, caution with your portions, think about your drinks & focus on your food.

    Scaring: Depending on the type of surgery you have; you may have some scars. These should fade over time. Some scars may cause localised numbness which should improve after a few months. If you have any problems with scaring speak to your surgical team and CNS.

    Changes to your bowel or bladder: After surgery and treatment, some people experience changes in how their bowels, bladder or both work. Sometimes these changes only last for a short period of time and eventually improve. However, for some people, these changes can be more persistent, may get worse after treatment or may only develop a while after treatment has finished, known as a late effect from treatment. If you experience bowel or bladder changes, it is important to speak to your CNS who can help you get the right support.

    Menopause: Most women who experience ovarian cancer will have already gone through menopause. However, some post-menopausal women may re-experience their menopausal symptoms and/or develop new symptoms following surgery to remove their ovaries. Menopausal symptoms can also return following chemotherapy. Women who were pre-menopausal prior to diagnosis and have surgery for their ovarian cancer, may develop symptoms of surgically induced menopause following the removal of their ovaries. Hot flushes and night sweats are the most common menopausal symptoms. Many women also notice weight changes, sleep disturbances, vaginal dryness and changes in libido. If you are suffering from vaginal dryness, vaginal lubricants and moisturisers can be prescribed.

    Most women with ovarian cancer can safely take Hormone Replacement Therapy (HRT) for the management of menopausal symptom and there are many different forms of HRT available such as tablets, patches and creams. HRT, however, may not be suitable for all women with ovarian cancer so you should discuss taking HRT with your medical team or a menopause specialist. Alternatively, some women find changes to lifestyle, herbal remedies and complimentary therapies such as acupuncture, hypnotherapy, massage, and aromatherapy helpful for their symptoms. Do tell your CNS or GP if menopausal symptoms are troubling you.

    Resuming sexual activity:  It is not uncommon to lose interest in sex and intimacy following your treatment for cancer. Cancer and its treatment can cause physical and emotional changes that may affect your sex life.  You may also have changes such as scars or hair loss that affect your body image. It is strongly advised that you abstain from penetrative intercourse for 12 weeks following your surgery as stated on all other leaflets

    We strongly encourage you to share your feelings with your partner if your feelings towards sex and intimacy have altered and take time to introduce intimacy if you wish to do so. If you feel you have ongoing problems with sex and intimacy that are not getting better with time, you may wish to consider speaking to a psychosexual counsellor.

    Other concerns

    Support: Some people prefer not to talk things through, while others get support from speaking about their experience. Details of support groups can be provided by your CNS.

    Exercise: Try to gradually increase your daily activity, with the aim of trying to build up to four or more thirty-minute sessions each week of activities that increase your heart rate. If you require further information to access any local programmes, please speak to your CNS team.

    Work: You can return to work whenever you feel ready to do so. All jobs are different, so it is hard to be specific. Whenever you return to work, remember it may be a shock to the system to begin with and it can be very useful to return in a phased manner, increasing your work hours over a few weeks.

    Financial concern: You will be eligible for free prescriptions, if you are not in receipt of this please speak to your CNS. You may also be entitled to certain grants and benefits; this can be individually assessed, or you can call the Macmillan helpline on 0808 808 00 00. If any other financial issues are causing you worry, speak to your CNS who can offer advice on who can help.

    Travelling abroad: Once you have completed your treatment, there is no reason not to travel abroad. Sometimes patients can have trouble in acquiring travel insurance. Your local Macmillan Support and Information Centre and the Macmillan website will be able to offer advice. 

    Follow up

    Clinical follow up. Once you have completed your treatment, you will begin a five-year surveillance period . The aim of this is to ensure everything is going well post treatment and to explore any of your concerns. You will have traditional follow up appointments every 3-6 months which may be face to face, video consultations, telephone appointments or patient supported follow up. During your appointments you will be asked questions about your recovery and any side effects or symptoms you have been experiencing. You may also be offered a pelvic examination and a CA125 blood test. If you are experiencing problems or are worried about anything between your appointments, you are encouraged to contact your CNS team who can assess you and if needed, can bring you back in for a clinic appointment sooner.

    When to contact your CNS

    It is important to remember you will still get coughs, colds, aches and pains and bowel upsets just like anyone else. Your GP will normally be happy to treat such problems. However, if they are concerned about your symptoms when they see you, they can contact your CNS who can arrange a clinic appointment.

    We would like you to contact your CNS if you have any of the following symptoms and they persist for more than two weeks:

    • Pain in the stomach or pelvis that was not present previously.
    • Persistent bloating or swelling of the stomach.
    • Bowel changes, if this is new e.g., diarrhoea or constipation.
    • Bleeding from the vagina
    • Bleeding from the back passage
    • New aches and pains or lumps in abdomen
    • Weight loss without dieting or exercise.
    • Feeling generally unwell.
    • Swelling of the legs.

    It is important to remember that even if you have some or all these symptoms it does not necessarily mean the cancer has come back but we will arrange to see you in clinic to check you over. Do remember, however, that some of these symptoms can also be caused by other conditions that are completely unrelated to ovarian cancer. So please do not become unduly anxious while awaiting your review.

    You can contact your CNS team Monday – Friday 8am – 4pm using the details provided at the end of this leaflet. If you phone and they do not answer, please leave a message and contact number on the answer phone, and you will be contacted as soon as the CNS picks up your message.

    Worries about cancer returning

    It is entirely natural to feel anxious that your cancer may return, and we recognise that this can make you feel very uncertain about the future and lead to difficulties in “getting on with life”. Should there be any cause for concern you will be reviewed by the clinical team. Appointments and appropriate investigations will be organised for you.

    Ways to manage worry and uncertainty about cancer

    • Learn to focus on the ways cancer has made you a stronger person.
    • Talk to family and friends about your concerns
    • Join a support group
    • Write a diary about your fears and feelings.
    • Get involved with an interesting hobby or other things you enjoy doing.
    • Review your priorities towards interesting and meaningful activities.
    • Remember that as time goes by, your worries can fade.
    • If depression, anxiety or any part of the cancer journey becomes overwhelming seek advice from your CNS or GP

    How to contact the Gynaecology Oncology Clinical Nurse Specialist team:

    Monday to Friday 8am-4pm telephone 0151 702 4186.

    If you get the answerphone please leave your name, date of birth, telephone number and a brief message. Your call will be answered within 24 hours, or on the next working day if it is a weekend or bank holiday.

    Support Networks Available Locally

    Further information, advice and support are available for yourself/partner and family from:

    Lyndale Cancer Support Centre - Knowsley

    Tel: 0151 489 3538

    Sefton Cancer Support Group

    Tel: 01704 879352

    www.seftoncancersupport.org.uk  

    St Helens Cancer Support Group

    Tel: 01744 21831

    Warrington & District Cancer Self-Help Group

    Tel: 01925 453139

    Widnes & Runcorn Cancer Support Group

    Tel: 0151 423 5730

    Isle of Man

    Manx Cancer Help Association

    Tel: 01624 679554

    www.manxcancerhelp.org

    Liverpool Sunflowers

    Liverpool Cancer Support

    Tel: 0151 726 8934

    The Wirral Holistic Care Services

    Tel: 0151 652 9313

    www.wirralholistic.org.uk

    Maggie’s Centre Clatterbridge

    0151 334 4301

    OVACOME                                                     

    www.ovacome.org.uk

    The daisy network                                      

    www.daisynetwork.org.uk                         

    Menopause Matters

    www.menopausematters.co.uk

    Macmillan

    Tel: 0808 808 0000

    www.macmillan.org.uk

  • Care After Cancer of the Vulva

    The leaflet is detailed below, or you can download the 'Care After Cancer of the Vulva' leaflet in PDF.

    Introduction

    You have now completed treatment for cancer of the vulva and this leaflet has been written to support you moving forward; with guidance on recovery, getting back to “normal”, your follow up and to help you decide if, or when, you should contact your Gynaecology Oncology Clinical Nurse Specialist (CNS). Your CNS and cancer support worker will be happy to provide further information & advice on all the aspects mentioned in this leaflet.

    Recovering from Cancer Treatment

    After treatment, you’ll probably be keen to get back to a sense of ordinary life. But you may still be coping with the side effects of treatment and with some difficult emotions. Recovery takes time, so try not to be hard on yourself.  you may find you have ‘up’ and ‘down’ days for a while afterwards.

    Recovering from surgery for cancer of the vulva

    The aim of surgery for your vulval cancer is to remove all the cancer. There are different operations to treat vulval cancer and which one you have is dependent on what stage of vulval cancer you have been diagnosed with.

    How quickly you recover from surgery will depend on the type of surgery you have had and there is very good evidence that by encouraging patients to return to normal as quickly as possible following surgery, reduces problems and complications. This is called an enhanced recovery and you will have received information about this during your hospital admission. Your recovery will depend on many things which makes it difficult to give an exact timeline. We encourage you to try to do a little more each day and use self-awareness to determine what is right for you. Usually, this type of surgery can take several months for you to feel fully recovered. Information regarding your recovery will have been provided to you prior to your discharge from hospital. However, if you do have any questions, you can contact your CNS and cancer support worker.

    Depending on your diagnosis, further treatment may be required, this being adjuvant (additional) treatment such as radiotherapy, chemotherapy. This decision is made on an individual basis dependent on results. Not everyone needs adjuvant (additional) treatment after surgery. If required, we would aim to start adjuvant treatment approximately six weeks after your surgery. This allows time for wound healing and for you to recover after your surgery.

    Caring for your vulva

    Your vulval skin will be more sensitive after your surgery and it can take a few weeks to completely heal. It is important to keep this area clean and dry. We encourage gentle rinsing using a jug of lukewarm water, slowly pour the contents over the wound area. You may need to repeat this a few times. Alternatively, you may use a shower head gently while standing in the bath or the shower, or even while sitting on the toilet.

    Keeping the wound area clean and dry after using the toilet is important in order to prevent infection. If you are not at home, you can use a water-filled squeeze bottle and some clean gauze in your handbag for when you need to use public toilets.

    Dry the area carefully using a hairdryer on a cool setting. If you prefer not to use a hairdryer, you may dab gently with clean, soft gauze (this can be bought from a chemist.) or clean soft towel. Avoid rubbing the area as this may cause discomfort and irritation. The area should be dry before you get dressed.

    When you are at home, try to expose the area to air as much as possible. This can be done by not wearing underwear for short periods of time or overnight. We recommend wearing loose-fitting cotton clothing, avoiding close fitting clothing like tights, cycling shorts, leggings and tight jeans.

    We suggest avoiding traditional soaps, talc, wipes, creams and perfumed products which may cause irritation and alternatively use a soap substitute such as dermol or hydramol.

    Getting back to “normal”

    Reaching the end of treatment can be a difficult time, whilst for others, it is a sign that things can start to get back to “normal”. Many women can return to “normal”, or find and be comfortable with a new normal, but for others this may be more difficult. There is no right or wrong way to feel. Your CNS will be happy to provide more information on all the areas mentioned below.

    Emotional impact

    Coping with a vulval cancer diagnosis and treatment can be hard. You may have many different emotions, from numbness, shock, or fear, to anger, guilt, or sadness. It may leave you feeling out of control of your life and future. It is often more difficult to deal with the unknown, so having the right amount of information and support may help you feel more in control. Your CNS is happy for you to talk through any concerns or questions when you have them. Remember, if you need more help, don’t be afraid to ask for it. Your healthcare team want to support you with any concerns or questions, no matter how big or small. After treatment, you may feel relieved that it’s over but also nervous about the future. It is common to feel anxious that the cancer may come back. Knowing the risks and what options are available if this happens can help you to cope with any fears.

     Physical impact

    Fatigue: Though fatigue is a common symptom, there are steps you can take to reduce or cope with this. Top tips include – take it easy, conserve your energy, maintain your energy & get moving.

    Scaring: Depending on the type of surgery you have; you may have some scars. These should fade over time. Some scars may cause localised numbness which should improve after a few months. If you have any problems with scaring speak to your surgical team and CNS.

    Lymphoedema: Lymphoedema is more likely to develop after surgery that has involved the removal of lymph nodes from the groin and in women who have radiotherapy following vulval cancer surgery which included the removal of lymph nodes in your groin. Lymphoedema is when your leg, legs, pelvic area or both swell with fluid that struggles to drain on its own. The job of your lymph nodes is to drain lymphatic fluid (waste fluid from cells) so it can be removed by your body. When lymph nodes are removed this can affect the natural circulation and drainage of tissue fluid from the legs. It is common that fluid can accumulate in the groin and genital area following surgery and should improve over time, yet for some women this may be more uncomfortable or painful. If you think you are developing swelling it is very important to let your specialist know and your doctor may want to examine you.  There are ways to reduce the risk of lymphoedema and to manage it through exercise, massage and light compression hosiery and you may be referred to a lymphoedema specialist if lymphoedema becomes a persistent problem. If you are concerned about lymphoedema, speak to your CNS who can offer you more advice.

    Changes to your bowel or bladder: After surgery, some people experience changes in how their bowels, bladder or both. This usually settles after a few weeks. If part of the vulva near to your urethra was removed, this may cause the stream of your urine to flow to one side or spray when you pass urine. This may feel odd the first few times you pass urine. If you experience bowel or bladder changes, it is important to speak to your CNS who can help you get the right support.

    Changes to your vulva: Immediately after surgery, your genital area will be swollen and bruised. This will heal but there will be changes in how your genital area looks. The inner and outer labia of your vagina may have been removed which will make the area look very different and this may come as a shock when you first see this. Sometimes surgery affects the nerves and can cause numbness, tingling or pins and needles around the vulva. You may also experience sensation changes in your groin and down your legs. This usually improves over the months after surgery. Sometimes it is permanent. It can be very hard to accept sudden changes in your body and it is not unusual to feel angry and upset. You may feel more body conscious and worry you somehow look different. It is important to remember that those around you will want to support you as much as they can, and it is encouraged you talk about these feeling. Your CNS will be happy to discuss your worries with you and you may find speaking to other women who have had similar experiences useful.

    Changes to your sex life: Following your surgery, it is strongly advised that you abstain from penetrative intercourse for 6 weeks. It is important that your vulval area has time to fully heal. Your sex life may also change following your treatment for cancer of the vulva because of physical and emotional factors and, it is not uncommon to lose interest in sex and intimacy following your treatment for cancer. You may feel differently about yourself or your sexuality and have other physical changes such as scars that affect your body image which may impact on your relationships. Treatment may have caused physical issues such as tightening and scaring of the vulval skin and reduced elasticity to the skin. You may have reduced sensation to the vulval and clitoral area or may have had your clitoris removed.  Your surgery may have included the opening to the vagina making penetrative sex more uncomfortable and you may also have vaginal dryness which can cause sex to be uncomfortable or even painful. We encourage you to share your feelings if your feelings towards sex and intimacy have altered and take time to introduce intimacy if you wish to do so. You may need time to adjust to the changes to your vulval area and explore what feels good now. You can discuss this privately with your CNS for advice. If you feel you have ongoing problems with sex and intimacy that are not getting better with time, you may wish to consider speaking to a psychosexual counsellor

    Other concerns

    Support: Some people prefer not to talk things through, while others get support from speaking about their experience. Details of support groups can be provided by your CNS.

    Exercise: Try to gradually increase your daily activity, with the aim of trying to build up to four or more thirty-minute sessions each week of activities that increase your heart rate. If you require further information to access any local programmes, please speak to your CNS team.

    Diet: Evidence shows that maintaining a healthy weight, avoiding excessive weight gain, and maintaining levels of physical activity is associated with an improved quality of life and enhanced recovery. Top tips: keep to your meal routines, chose reduced fat, walk off the weight, pack a healthy snack, look at labels, caution with your portions, think about your drinks & focus on your food.

    Work: You can return to work whenever you feel ready to do so. All jobs are different so it’s hard to be specific. Whenever you return, remember it may be a shock to the system to begin with and it can be very useful to return in a phased manner, increasing your work hours over a few weeks.

    Financial concern: You will be eligible for free prescription, if you are not in receipt of this please speak to your CNS. You may also be entitled to certain grants and benefits; this can be individually assessed, or you can call the Macmillan helpline on 0808 808 00 00. If any other financial issues are causing you worry, speak to your CNS who can advise who can help.

    Travelling abroad: Once you have completed your treatment, there is no reason not to travel abroad. Sometimes patients can have trouble in acquiring travel insurance, your local Macmillan Support and Information Centre and the Macmillan website will be able to offer advice.  

    Follow up after treatment

    Clinical follow up. Once you have completed your treatment, you will begin a five-year surveillance period. The aim of this is to ensure everything is going well post treatment and to explore any of your concerns. You will have traditional follow up appointments.. During your appointments you will be asked questions about your recovery and any side effects or symptoms you have been experiencing. You may also be offered a pelvic examination and internal examination. If you did not have groin node or sentinel node dissection as part of your original surgery, you may be offered ultrasound scans of your groins every 3-6 months to assess your lymph nodes for any changes. If you are experiencing problems or are worried about anything between your appointments, you are encouraged to contact your CNS team who can assess you and if needed, can bring you back in for a clinic appointment sooner.

    When to contact your CNS

    It is important to remember you will still get coughs, colds, aches and pains and bowel upsets just like anyone else. Your GP will normally be happy to treat such problems. However, if they are concerned about your symptoms when they see you, they can contact your CNS who can arrange a clinic appointment.

    For most patients their treatment is effective, and their cancer will not come back but sometimes people do have problems. We would like you to contact your CNS if you have any of the following symptoms and they persist for more than two weeks:

    • Pain, itching or soreness on the vulva or around the back passage (anus).
    • Bleeding from the vulva or vagina (front passage).
    • Bleeding from the back passage (rectum).
    • New swelling of the legs.
    • New swelling in the groin

    It is important to remember that even if you have some or all these symptoms it does not necessarily mean the cancer has come back, but we will arrange to see you in clinic to check you over. Do remember, however, that some of these symptoms can also be caused by other conditions that are completely unrelated to vulval cancer.

    You can contact your CNS team Monday – Friday 8am – 4pm using the details provided at the end of this leaflet. If you phone and they do not answer, please leave a message and contact number on the answerphone, and you will be contacted as soon as the CNS picks up your message.

    Worries about cancer returning

    It is entirely natural to feel anxious that your cancer may return, and we recognise that this can make you feel very uncertain about the future and lead to difficulties in “getting on with life”. Should there be any cause for concern, you will be reviewed by the clinical team and appointments, or appropriate investigations will be organised for you.

    Ways to manage worry and uncertainty about cancer

    • Learn to focus on the ways cancer has made you a stronger person.
    • Talk to family and friends about your concerns
    • Join a support group
    • Write a diary about your fears and feelings.
    • Get involved with an interesting hobby or other things you enjoy doing.
    • Review your priorities towards interesting and meaningful activities.
    • Remember that as time goes by, your worries can fade.
    • If depression, anxiety or any part of the cancer journey becomes overwhelming seek advice from your CNS or GP

    How to contact the Gynaecology Oncology Clinical Nurse Specialist team:

    Monday to Friday 8am-4pm telephone 0151 702 4186.

    If you get the answerphone please leave your name, date of birth, telephone number and a brief message. Your call will be answered within 24 hours, or on the next working day if it is a weekend or bank holiday.

    Support Networks Available Locally

    Further information, advice and support are available for yourself/partner and family from:

    Lyndale Cancer Support Centre - Knowsley

    Tel: 0151 489 3538

     

    Sefton Cancer Support Group

    Tel: 01704 879352

    www.seftoncancersupport.org.uk  

     

    St Helens Cancer Support Group

    Tel: 01744 21831

     

    Warrington & District Cancer Self-Help Group

    Tel: 01925 453139

     

    Widnes & Runcorn Cancer Support Group

    Tel: 0151 423 5730

     

     

    Isle of Man

    Manx Cancer Help Association

    Tel: 01624 679554

    www.manxcancerhelp.org

     

    Liverpool Sunflowers

    Liverpool Cancer Support

    Tel: 0151 726 8934

     

    The Wirral Holistic Care Services

    Tel: 0151 652 9313

    www.wirralholistic.org.uk  

     

    Maggie’s Centre Clatterbridge                                                       

    Tel:0151 334 4301                                                        

    www.maggies.org                       

     

    Eve appeal

    Tel: 020 7605 0100

    www.eveappeal.org.uk

     

    Macmillan

    Tel: 0808 808 0000

  • Surgery for Vulval Cancer

    The leaflet is detailed below, or you can download the 'Surgery for Vulval Cancer' leaflet in PDF. 

    What is the vulva?

    The vulva is made up of all the visible female sex organs on the outside of the body. It includes:

    • The entrance to the vagina (birth canal)
    • The opening of the urethra (the tube that drains urine from the bladder)
    • Labia minora – 2 delicate skin folds that lie either side of the entrance to the vagina and opening of urethra
    • Labia majora – 2 larger folds of hair covered skin that lie outside the labia minora
    • Clitoris – a small area of very sensitive tissue that lies where the labia minora join at the front of the vulva and helps with sexual arousal and climax (orgasm)
    • Mons pubis – an area of fatty tissue and hair covered skin in front of the vulva, which lies over the pubic bone (bone at the front of the pelvis)
    • Perineum – the area of skin at the back of the vulva that sits between the entrance to the vagina and the anus (back passage)

    What is cancer?

    All the organs and tissues in the body are made up of cells. Cells normally copy themselves to multiply and replace old cells that become damaged in a controlled way – this is how the body heals itself. Once the damage has been repaired the cells stop multiplying. In cancer, cells become abnormal and start to multiply out of control, making more and more abnormal cells. These grow into a lump or lesion known as a tumour. Cancer can be diagnosed by taking a sample of the lump (a biopsy) and looking at the cells under a microscope to see if there are any cancer cells.

    Not all tumours are cancerous (malignant), some are benign (not containing any cancer cells). Benign tumours cannot spread to other parts of the body, but cancers can grow into the surrounding normal tissue (local invasion) and spread to other parts of the body (metastasis). Spread of cancer tends to go through the lymphatic system. The lymphatic system is a network of thin tubes and glands (called lymph nodes) throughout the body that drain fluid and waste from around the body helping the body to fight infection and disease. The lymphatic drainage from the vulva first goes to the lymph nodes (glands) in the groins (the area where the legs meet the body in front of the hip) so if cancer spreads from the vulva it tends to affect the groin lymph nodes first.

    Diagnosing vulval cancer

    Vulval cancer is diagnosed by removing a sample of tissue, which is then examined by a histopathologist (doctor who diagnoses disease in tissues/organs) under a microscope in a laboratory. This may be taken as a small piece of tissue from the area of concern, which is often done in clinic under local anaesthetic, or as an excision biopsy (where the whole lump is removed along with a border of healthy tissue).

    A CT or MRI scan may be done to check for spread to other areas of the body.

    Grades of cancer:

    Some types of cancer are given a “grade” by the histopathologist, which describes how abnormal the cells are and how fast they are growing.

    • Grade 1 or “well-differentiated” cancer cells look close to normal and are usually slow growing
    • Grade 2 or “moderately-differentiated” cancer cells look more abnormal and grow a bit faster than grade 1
    • Grade 3 or “poorly-differentiated” cancer cells look very different to normal and are more likely to grow or spread faster

    Stages of vulval cancer

    Cancers are “staged” depending on how big they are and whether they have spread to other parts of the body – this can be assessed by a combination of examination, scans, and histopathology results. There are 4 main stages of vulval cancer. Stages 1 and 2 may be called early stage and stages 3 and 4 cancers may be called advanced stage cancers.

    • Stage 1 – The cancer is only in the vulva and has not spread to the lymph nodes
    • Stage 1A – the cancer is up to 2cm size and has invaded up to 1mm deep into the skin
    • Stage 1B – the cancer is more that 2cm size OR has invaded more than 1mm deep into the skin
    • Stage 2 – The cancer can be any size and has spread to nearby areas including the lower part of the urethra or vagina, or the anus but has not spread to the lymph nodes

     

    • Stage 3 – The cancer has spread to the lymph nodes in the groin
    • Stage 3A – The cancer has spread to one or two lymph nodes that are under 5mm size OR to one lymph node that is 5mm or bigger
    • Stage 3B – The cancer has spread to three or more lymph nodes under 5mm size OR to two or more lymph nodes that are 5mm or bigger
    • Stage 3B – The cancer has spread to any number of lymph nodes AND it has spread outside the containing wall of the lymph node

     

    • Stage 4 – The cancer has spread into other nearby or distant tissues or organs
    • Stage 4A – The cancer has spread to or invaded:
    1. the upper part of the urethra AND/OR the upper vagina, the bladder, the rectum (back passage), or is attached to bone in the pelvis
    2. lymph nodes in the groin that have become fixed (can’t be moved) or have formed an ulcer
    • Stage 4B – The cancer has spread to:
    • Lymph nodes inside the pelvis or further away
    • Other parts of the body that are further away from the vulva (for example, lungs)

    Treatment for vulval cancer

    The recommended treatment for vulval cancer varies depending on the stage and cancer type. Your diagnosis and treatment will normally be discussed by a group of specialists in gynaecological cancers known as the multi-disciplinary team or “MDT”. The MDT includes specialists in gynaecological cancer treatments and investigations including surgery, chemotherapy (drug treatments), radiotherapy (treatment using X-rays), radiology (scans), and histopathology (examination of tissue under the microscope) as well as clinical nurse specialists (CNS), who will support you through your investigation and treatment. The MDT will make recommendations about your investigation and treatment, which will be explained to you in clinic by one of the cancer doctors who, along with a CNS, will support you to make decisions about your care.

    • Surgery for Vulval Cancer
    • Surgery to the Vulva
    • Wide Local Excision (WLE)

    Wide local excision (WLE) is an operation to remove smaller cancers along with a border of healthy tissue. The aim is to have “clear margins” (no cancer at the edges of the removed tissue) to ensure all the cancer has been removed and to reduce the risk of it coming back or spreading. If there is cancer at the edges of the removed tissue further treatment may be needed (usually a further operation to remove more tissue).

    Partial Vulvectomy

    For larger cancers more of the vulva needs to be removed.

    Cancers in the front part of the vulva may require removal of most of the front half of the vulva (this is called an anterior vulvectomy/hemivulvectomy). If the cancer is close to the clitoris, then it may be necessary to remove part, or all, of the clitoris, which can affect sexual function. If the cancer is close to the urethra, it may be necessary to remove a small amount of the lower end of it, this doesn’t usually affect continence (being able to control when you pass urine). Wounds in the front part of the vulva are usually easily closed with stitches.

    Posterior Vulvectomy

    Cancers in the back part of the vulva usually need removal of the back half of the vulva (this is called a posterior vulvectomy/hemivulvectomy). Care is taken to avoid damaging the muscle around the opening of the back passage (anal sphincter), which is important for controlling when you have your bowels open. If your cancer is very close to the anus your gynaecological cancer surgeon will discuss options with you, this may sometimes include surgery to the rectum (back passage) and involve the colorectal (bowel) surgeons, as a stoma (where the end of the bowel is brought out onto the tummy and poo is collected in a bag that sticks onto the surface of the tummy) may be needed. A specialist stoma nurse would support you in learning how to look after your stoma if this was needed.

    Lateral Vulvectomy

    Cancers that are on one side only may be removed by removing that side of the vulva (this is called a lateral vulvectomy/hemivulvectomy). This usually does not involve the clitoris or urethra.

    Total/Radical Vulvectomy

    Large cancers and cancers that are in several different places on the vulva may need an operation to remove the whole vulva, including the inner and outer labia and the clitoris. Care is taken to avoid damaging the urethra and the anus, and the vagina will be left open.

    Reconstructing the Vulva

    Wounds from WLE and anterior or lateral vulvectomy operations are usually straightforward to close with dissolvable stitches.

    Larger wounds and those in the back part of the vulva (where there is less skin) may not be possible to close easily with stitches without putting too much tension on the wound (which increases the risk of the wound breaking down). These wounds are therefore often closed with plastic surgery reconstructive techniques called skin flaps (where a section of skin next to the wound is moved to close the gap with less tension, whilst keeping the same blood supply). This surgery is often performed jointly with plastic surgeons. Sometimes skin grafts may be used, where a thin piece of skin is taken from another area to cover the wound where the cancer has been removed from. Less often it may be appropriate to allow the wound to heal from the base up without closing it (this is called healing by secondary intention).

    Surgery to the Lymph Nodes

    For the smallest stage 1A vulval cancers, surgery for the lymph nodes is not usually needed as the risk of the cancer spreading is low.

    For most vulval cancers, surgery to remove some or all lymph nodes from one or both groins is usually recommended.

    Sentinel Lymph Node Biopsy

    For smaller cancers that are in one place on the vulva, not too close to the urethra, vagina or anus, and where there is no sign of spread to the lymph nodes on scan it may be possible to do a sentinel lymph node biopsy. This is where a dye is injected into the cancer in the operating theatre and only the lymph node(s) that the dye highlights are removed through a cut in the groin(s). If there is no sign of cancer in these “sentinel” lymph nodes, then the rest of the lymph nodes do not need to be removed. Sentinel Node Biopsy is done at the same time as surgery to remove the vulval cancer.

    Groin Lymphadenectomy

    For larger cancers, cancers that are in more than one place on the vulva or involving the urethra, vagina or anus, or where there is suspicion of spread of the cancer to the lymph nodes on scan full groin lymphadenectomy (removal of all the lymph nodes in the groin) is usually recommended. This operation may be done at the same time as surgery to remove the vulval cancer, or at a later date. Removing all the lymph nodes increases the risk of fluid collecting in the groin after surgery, which may need draining (called a lymphocyst) and, longer-term, problems with fluid swelling in the leg due to the normal fluid drainage from the leg being disrupted (called lymphoedema). The latest audit data from Liverpool Women’s (from 2019) shows around 4 in every 10 women who have groin lympadenectomy develop a lymphocyst after the surgery.

    What to expect after surgery

    Vulval surgery may be done under a general anaesthetic (where you are asleep) or under a regional anaesthetic (where anaesthetic is injected into your back to make you numb from the chest down). Your anaesthetic doctor will discuss with you the best option for your surgery. You will be given painkillers while you are on the ward to keep you comfortable. It is a good idea to make sure you have some of your usual painkillers at home to help you stay comfortable after you leave hospital.

    It is not possible to stick dressings onto the vulva as would be done for wounds on other parts of the body, a non-stick piece of gauze may be placed over the wound temporarily following surgery.

    You will likely also have a catheter (flexible tube) placed into your bladder through the urethra to drain urine temporarily following the surgery. If you have had regional anaesthetic you may have a catheter until to are able to mobilise independently, however, if the surgery involved the urethra or close to the urethra then a catheter may be required for a longer period to allow time for the healing process.

    If you have had groin lymphadenectomy you will have a drain in each groin that has been operated on and a dressing on the wounds. This is a flexible tube that is passed through the skin in the groin and is attached to a suction bottle outside the body to draw out excess fluid. Drains are usually kept in for a few days until fluid stops draining into them. Occasionally, you may be discharged home with these in place and an appointment will be made for you to return to have these removed.

    You may be recommended to have a course of antibiotics following surgery to prevent or treat infection (this may be through a drip or tablets that you take by mouth). Antibiotic douches are sometimes used, where antibiotics are used to wash the vulva 3 times a day for a few days after surgery, with the aim to reduce the risk of infection.

    You will normally be given compression stockings to wear and a course of blood thinning injections for 4 weeks after the operation to reduce the risk of developing blood clots in the legs (deep vein thrombosis (DVT)) or on the lungs (pulmonary embolism (PE).

    You will be followed up with the results of your histopathology usually around 3 weeks after surgery. Your doctor will explain the results to you and if any further treatment has been recommended by the MDT. Further treatment might include another operation, radiotherapy (using X-rays to destroy cancer cells), or chemoradiotherapy (a combination of radiotherapy and chemotherapy (anti-cancer drugs).

    What you can do to help your recovery

    Keep wounds clean and dry. We encourage gentle rinsing using a jug of lukewarm water, slowly pour the contents over the wound area. You may need to repeat this a few times. Alternatively, you may use a shower head gently while standing in the bath or the shower, or even while sitting on the toilet.

    Keeping the wound area clean and dry after using the toilet is important in order to prevent infection. If you are not at home, you can use a water-filled squeeze bottle and some clean gauze in your handbag for when you need to use public toilets.

    Dry the area carefully using a hairdryer on a cool setting. If you prefer not to use a hairdryer, you may dab gently with clean, soft gauze (this can be bought from a chemist.) or clean soft towel. Avoid rubbing the area as this may cause discomfort and irritation. The area should be dry before you get dressed.

    When you are at home, try to expose the area to air as much as possible. This can be done by not wearing underwear for short periods of time or overnight. We recommend wearing loose-fitting cotton clothing, avoiding close fitting clothing like tights, cycling shorts, leggings and tight jeans.

    We suggest avoiding traditional soaps, talc, wipes, creams and perfumed products which may cause irritation and alternatively use a soap substitute such as dermol or hydramol.

    Stop smoking, ideally before the operation. Smoking greatly increases the risk of infection and wound breakdown as the chemicals released into the blood from smoking interfere with the body’s natural healing process. Smoking also greatly increases the risk of blood clots (DVT and PE). Stopping smoking will help to reduce these risks. The latest audit data from Liverpool Women’s (from 2019) showed around 3 to 4 in every 10 women who are smokers suffered wound breakdown compared to only 1 in 10 for non-smokers. Support and advice is available to help you stop smoking. This will be offered at your pre-operative assessment.

    Seek help if you notice any signs of infection signs of infection include, the wound becomes hot, red, swollen or if there is pus coming out of it, or if you have a fever or feel unwell. You can contact your CNS, GP, or attend the hospital emergency department. For medical advice call 111, in an emergency call 999.

    Avoid sitting on your bottom while the wounds are healing, especially if you have had skin flaps. (Sitting puts pressure on the wounds and decreases the blood flow to the area, which can cause problems with healing.)

    Take things easy after surgery. It’s good to keep mobile as it reduces the risk of blood clots but avoid long walks, strenuous exercise and heavy lifting for 6 weeks after major surgery. You will not usually be able to drive for around 6 weeks if you have had major surgery – tell your insurer and check that you are covered before you start driving again.

    You will usually need to avoid having penetrative intercourse for at least 6 weeks after surgery to allow your wound to heal (although this varies from person to person and depends on the extent of surgery). Scar tissue can sometimes cause tightening around the vagina, which can make sex more difficult or uncomfortable. Tell your doctor or CNS if you are experiencing problems as they will be able to advise on how to help with this.

    Other sources of information:

    https://www.macmillan.org.uk/cancer-information-and-support/vulval-cancer

    https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/surgery-for-vulval-cancer

    https://www.macmillan.org.uk/cancer-information-and-support/vulval-cancer/treatment

    https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/lymphoedema

    https://www.macmillan.org.uk/cancer-information-and-support/after-treatment

    https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/sex-and-cancer

     

     

TYPE IN YOUR SEARCH AND PRESS ENTER