Radical Trachelectomy

Transcription

1 Radical Trachelectomy Information for Patients Excellent Care with Compassion

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3 Contents Benefits, treatment options and choices 4 What is a radical trachelectomy? 4 Diagram 5 Who is suitable for radical trachelectomy? 7 Benefits and risks 7 Emotions 8 Is there anything I should do to prepare for my operation? 8 Will I need to have any tests before my operation? 9 When will I come in for my operation? 10 What happens on the day of my operation? 11 What happens after my operation? 11 Possible risks and complications of treatments 12 Are there any risks? 12 What are the risks associated with a general anaesthetic? 13 Are there any long-term complications associated with this operation? 13 Wind pain 14 Vaginal discharge 15 Lymphoedema 15 Lymphocysts 15 Cervical stenosis 15 Is it normal to feel weepy or depressed afterwards? 16 Discharge information 16 When can I get back to normal? 16 Exercise 17 Sexual intercourse 17 Returning to work 18 When can I start driving again? 18 Follow up 18 Future pregnancy 19 Contact details for Lancashire Teaching Hospitals 19 Clinical trials 20 Further support 20 Notes 21 33

4 If you have recently been diagnosed with cervical cancer, it is normal to experience a wide range of emotions. For some women, it can be a frightening and unsettling time. Whatever you may be feeling at present, try talking about it with someone who specialises in dealing with this condition, such as your Macmillan Gynaecology Oncology Clinical Nurse Specialist. She will listen, be able to answer any questions you may have and can put you in touch with other professionals or support agencies, if you wish. Some useful contact numbers are also listed at the back of this booklet. Benefits treatment options and choices The aim of this surgery is to give the best possible outcome and to cure you of cervical cancer. The treatment options will be discussed with you by your consultant, and you may find the separate leaflet regarding cancer of the cervix helpful. Radical trachelectomy is an operation performed for early stage cancer of the cervix in order to preserve fertility (retain the ability to have children). The conventional treatment for an early stage cancer of the cervix is a radical hysterectomy. Radical trachelectomy is a surgical technique that has been developed in recent years by skilled gynaecological oncologists in only a few specialist centres throughout the world. What is a radical trachelectomy? Radical trachelectomy with pelvic lymphadenectomy (removal of lymph glands) is a fertility preserving but radical procedure, preserving the womb. The lymph nodes are removed to check for spread of the cancer. It involves removing the whole of the cervix, top 2-3 cms of the vagina, tissue from around the cervix and pelvic lymph glands. Most of the operation is done through the vagina so no incisions will be seen. 44

5 The removal of lymph glands is usually performed by key-hole surgery and requires 3-4 small cuts in the abdomen. However, sometimes this is not possible for technical reasons and a larger incision may be needed. A large permanent stitch is inserted around the opening to the uterus, strong enough to withhold a pregnancy. In some situations it is planned that the operation will be performed as an open procedure through a larger cut. This depends upon the size and nature of the cervical cancer. In this operation, your surgeon will try to remove all of the cancer, but leave behind the internal opening of the cervix. This is then stitched closed, leaving a small opening to allow the flow of your period to escape. The idea is that the stitch will support a growing pregnancy until the baby can be born by caesarean section. This operation can only be done if you have a stage one cervical cancer. Sometimes the part of the cervix that is removed during the surgery is checked under a microscope while you are still in the operating 55

6 theatre. If there are no cancer cells around the edge of the tissue that has been removed and your surgeon is sure that all the cancer has gone, you will not need to have any more tissue removed. If the lab results show that some cancer has been left behind, you will have to have more tissue taken away. Your surgeon may then have to do a hysterectomy after all. This can only be done during the same operation if you have given your consent beforehand. Once all the checks have been done, your surgeon will put in the stitch that will hold your cervix closed. Because there is a small risk of cancer spread to the lymph your surgeon may also need to remove some lymph nodes from around your womb. This is usually done with a laparoscope (so it is sometimes called keyhole surgery). You will have up to 5 small cuts (incisions) around your lower abdomen when you wake up. These are the openings the surgeon used to remove your lymph nodes. The lymph nodes will be checked under a microscope to see if they contain any cancer cells. If they don t, then you will not need any further treatment. If cancer cells are found in any lymph nodes, it is a sign that some cancer cells could have spread from your cervix and a cancer could begin to grow again. Your doctor is then likely to suggest that you have some radiotherapy to kill off any other cancer cells that may have been left behind. If you need to have radiotherapy, you will not be able to have a baby after the treatment. This can be very upsetting if you were hoping to have a family and your medical and nursing team will do all they can to support you. Sometimes before doing the main operation the surgeon will send some lymph nodes for urgent assessment to check for spread. All the tissues and lymph glands removed are examined by a pathologist over the next two weeks. If cancer cells are found in either the margins around the tumour or in the lymph glands, then either further surgery and/or radiotherapy will be needed. The aim is to have a clear cancer-free margin of normal tissue. 66

7 Who is suitable for radical trachelectomy? To be selected for this operation you must have a strong desire to preserve your potential fertility. Following a referral to a specialist centre a careful assessment will be carried out. This may involve: CT/MRI imaging Examination under anaesthetic Review of the pathology/biopsies performed at your local hospital Chest x-ray The cancer must be small and confined to the cervix. The surgeon will also discuss with you all aspects of the operation such as after care, follow up care and implications of the operation and possible future pregnancies. Benefits and risks You may want to know whether your treatment will work or whether you can stay well without treatment. Your partner or family 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 want to ask your doctor. Emotions Following the diagnosis of cancer, you are likely to experience many different emotions. You might be worried about your fertility or sexual function as a woman. It is important to express your feelings by talking to those close to you. Support is available and will be offered to you and your partner at the hospital by the ward nurses, specialist nurse, counsellor or 77

8 social worker. You may require support at different times throughout your treatment and follow up care, and arrangements can be made for this via the address and contact telephone number at the end of this booklet. Is there anything I should do to prepare for my operation? Yes. 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. You are more than welcome to visit the ward and meet the staff before you are admitted to hospital. Just ask your Macmillan Gynaecology Oncology Clinical Nurse Specialist to arrange this for you. If you are a smoker, it would benefit you greatly to stop smoking or cut down before you have your operation. This will reduce the risk of chest problems as smoking makes your lungs sensitive to the anaesthetic. You should also eat a balanced diet and if you feel well enough, take some gentle exercise before the operation, as this will also help your recovery afterwards. Your GP, the practice nurse at the surgery or the doctors and nurses at the hospital will be able to give you further advice about it. 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 bed sheets, vacuuming and gardening) and to look after your children, if necessary. You may wish to discuss this further with your Macmillan Gynaecology Oncology Clinical Nurse Specialist. If you have any concerns about your finances whilst you are recovering from surgery, you may wish to discuss this with your Macmillan Gynaecology Oncology Clinical Nurse Specialist or the 88

9 social worker. You can do this either before admission to hospital or whilst you are recovering on the ward. Just ask the ward staff if you would like to see a social worker. Will I need to have any tests before my operation? Yes. These tests will ensure that you are physically fit for surgery and help your doctor to choose the most appropriate treatment for your type of disease and stage (type of cells and the actual position of the cancer). You may have: An ECG (recordings of your heart) A chest X-ray Respiratory function tests A blood sample (to check that you are not anaemic and that the function of your kidneys and liver is normal) An MRI, CT or ultrasound scan before surgery. The blood samples will also be used to check for ovarian cancer tumour markers, such as CA125, which is often high in a woman with ovarian cancer. Often the tests are arranged when you come to a pre-operative appointment in the out-patient department, one or two weeks before surgery. You will be given the opportunity to ask the doctor and your Macmillan Gynaecology Oncology Clinical Nurse Specialist any questions that you may have. It may help to write them down before you come to hospital. When will I come in for my operation? You will be admitted to the ward on the day or the day before your operation. The ward clerk or one of the nurses will greet you and show you to your bed. If your bed is not ready, you will be given a seat on the ward until it becomes available. You will meet the ward nurses and doctors involved in your care and the anaesthetist will visit you to discuss the anaesthetic and to 99

10 decide whether you will have a pre-med (tablet or injection to relax you) before you go to the operating theatre. You can ask any further questions you have at this time. Your temperature, pulse, blood pressure, respiration rate, height, weight and urine are measured to give the nurses and doctors a base line (normal reading) from which to work. You will be asked to sign a consent form to confirm that you understand and agree to the operation. Before your operation, you may be given a powder mixed in water to drink during the 24 hours before your operation. This drink has a strong laxative effective and is given to clear your bowel so that it is empty during surgery, enabling a safer and easier operation. If your bowel is not clear on the morning of surgery, you may be offered a small enema to help empty it. You will be asked to have only clear fluids up until 2 hours before surgery. You will not be allowed to have anything to eat or drink after this time, including chewing gum or sweets. A drip may be attached to your hand / arm to provide you with fluids and prevent dehydration during this time. You will be given special surgical stockings (anti-embolism stockings) to wear and may start having injections to prevent blood clots forming (also known as DVT or deep vein thrombosis) after surgery. This is necessary because when you are recovering from the operation, you may be less able to walk around and keep the blood circulating in your legs. What happens on the day of my operation? Before going to the operating theatre, you will be asked to take a bath or shower and change into a theatre gown. All make-up, nail varnish, jewellery (except wedding rings, which can be taped into place), dentures, hearing aids, contact lenses, wigs and scarves 10

11 must be removed. Wigs, scarves and dentures can be removed when you arrive at theatre After your operation You will probably feel some pain or discomfort when you wake, and you will be given painkillers, as required. You may have a drip in your arm and possibly a catheter or small tube to drain urine from your bladder. These will be removed when the doctor instructs the staff to do so. The physiotherapist will show you how to breathe properly and encourage you to do some simple exercises. Your surgeon will visit to explain exactly what happened during the operation and will be able to tell you when you can start to drink and get out of bed. You may have a pack of gauze in the vagina for a short time after the operation. 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 with this. If you are constipated you may be given a laxative. If you need keyhole surgery you will have stitches that dissolve. You will normally stay in hospital for two-three days. For the first two weeks home you should rest, relax and continue to do the exercises that you were shown in hospital. Try to take a short walk every day, look after your posture, eat healthily, drink plenty of fluids and rest whenever you need to. After four-six weeks you may begin to feel more or less back to normal. 11

12 Any tissue taken at the time of your operation will be sent for examination and you will be informed of the result. Possible risks and complications of treatments Are there any risks? As with any operation there are risks but it is important to realise that most women do not have complications and no-one will develop all complications. As with any operation, there is a risk associated with having a general anaesthetic*. Also, as with any major abdominal surgery, there is the risk of bruising or infection in the wound. Internal bruising and infection may also occur. A blood transfusion may be needed to replace blood lost during the operation. Very occasionally, there may be internal bleeding after the operation, making a second operation necessary. Patients occasionally suffer from blood clots in the leg or pelvis (deep vein thrombosis or DVT). This can lead to a clot in the lungs. Moving around as soon as possible after your operation can help to prevent this. The physiotherapist will visit you on the ward and show you some gentle leg exercises, safe ways to move in and out of bed and breathing exercises to reduce the risk of blood clots or a chest infection. We will give you special surgical stockings to wear whilst in hospital and injections to thin the blood. The physiotherapist will visit and show you some leg exercises to prevent blood clots. After the operation, the bladder and bowels may take some time to begin working properly. Some women have loss of feeling in the bladder that may take some months to get better. During this time you need to take special care to empty your bladder regularly. Rarely, a hole may develop in the bladder or in the tube bringing urine to the bladder (ureter) at the time of surgery which results 12

13 in leakage of urine into the vagina. The hole may close without surgery, but another operation may be necessary to repair this. *What are the risks associated with a general anaesthetic? Please refer to the separate Trust leaflet you and your anaesthetic. Are there any long-term complications associated with this operation? The skin around the wound is usually numb for several months until the small nerves damaged by the incision grow back. Sometimes the numbness may affect the tops of the legs or the inside of the thighs. This nearly always gets better in six-twelve months. Although we try to make sure that any problems are reduced to a minimum, no surgical operation can be guaranteed free of complications and 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. Any potential risks of your operation will be discussed with you on an individual basis, when you are discussing and signing the consent form, with a member of the medical team. Problems after trachelectomy may include wound and urinary infections (which may require antibiotics) and irritable bladder (which may result in you having to pass urine very frequently and may persist for several weeks after the operation has been performed). Some women may feel pelvic pain or pain on intercourse. There can sometimes be irregular bleeding and/or bleeding after sexual 13

14 intercourse. Occasionally the entrance to the womb can become too tight, which may require further surgery. There is a small risk of the bowel being punctured when the gas or laparoscope (used for keyhole surgery) is inserted. In these circumstances an immediate operation may be necessary to repair the damage (1 in every 1000). This will involve a bigger wound to the abdomen and you will have to stay longer in hospital. If you have any concerns about any of the risks mentioned here please speak to a doctor or CNS. Wind pain The operation does result in a lot of wind accumulating in the abdomen that can cause pain in the shoulder, back and abdomen. 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. Vaginal discharge Some women have a small bloodstained vaginal discharge for up to six weeks after the operation. If this becomes heavy or the discharge smells offensive you are advised to contact your general practitioner or your Macmillan Gynaecology Oncology Clinical Nurse Specialist. Lymphoedema Lymphoedema is swelling due to excess accumulation of fluid in the tissues. Two types of lymphoedema are: Primary which is a congenital or hereditary condition, Secondary can be caused by malignant disease, surgery, radiotherapy, infection, trauma, venous disease or immobility. 14

15 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). It may be necessary to meet with the lymphoedema practitioner who will help with your management. Lymphocysts Lymphocysts are collections of lymphatic exudate 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. Cervical stenosis Cervical stenosis is also possible from this treatment. This is a narrowing of the entrance to the womb. Is it normal to feel weepy or depressed afterwards? Yes. It is a very common reaction to the operation and to being away from your family and friends. If these feelings persist when you leave hospital seek the advice and support of your friends, family GP, and your Macmillan Gynaecology Oncology Clinical Nurse Specialist may be able to help you. There are also a number of local and national support groups. Details are given at the end of this booklet. Discharge information When can I get back to normal? It is usual to continue to feel tired when you go home. It can take up to 3 months to fully recover from this operation, sometimes longer, especially if you have had, or are still having, chemotherapy. However, your energy levels and what you feel able to do will usually increase with time. This differs for each individual, so you should listen to your body s reaction and rest when you need to. 15

16 For the first 2 to 3 weeks after surgery, lifting should be restricted. Light activities such as dusting and washing up can be started. Break up your activities so that you are doing a small amount at a time. Limit your lifting to kettles, small saucepans and items weighing approximately the same as 1 litre water bottles. Gradually build up to more strenuous activities such as vacuuming after 4 weeks, but listen to your body and stop if you feel discomfort or pain. Remember to lift correctly. Bend your knees. Keep your back straight and tighten your pelvic floor and abdominal muscles. This should be a habit for life. Try not to stand for long periods at a time initially. Many everyday chores can be done sitting down such as ironing and peeling vegetables. Exercise It is important to continue doing the exercises shown to you by the physiotherapist for at least 6 weeks after your operation. Walking: It is important to continue with the regular walking you were doing whilst in hospital. Start with 10 minute walks, 1-2 times per day and gradually increase the pace and distance you walk. You may find you can walk minutes after 2-3 weeks. Gentle, low impact exercises such as pilates and yoga may be enjoyable and beneficial and they can be started as soon as you feel able, usually from 4 weeks. Swimming: You may resume or start swimming once your wound has completely healed, and once any vaginal bleeding or discharge has stopped. Some women may feel ready after 2-3 weeks, but others may not feel ready till 6 weeks. 16

17 Competitive sport and high impact exercises are best avoided for 6-12 weeks, depending on your previous level of fitness. The physiotherapist or your Macmillan Gynaecology Oncology Clinical Nurse Specialist will be happy to give advice on your individual needs. Sexual intercourse Full penetrative sex should be avoided for four-six weeks, to enable the top of the vagina to heal. You may experience a small amount of discharge (brown) from the stitches via the vagina. (If this becomes smelly you should contact your GP). You will be advised to use contraception (please discuss this with the doctor or nurses). You will then have a further MRI scan to check for any signs of recurrence of the cancer. If everything is all right then it is okay to try for a pregnancy at this stage. Returning to work This will depend upon the type of work you do, how well you are recovering, and how you feel physically and emotionally. Some women will feel ready to return at 4-6 weeks if the job is not physically demanding or part time. However, if your work is more physically demanding 6-12 weeks is recommended. It may be helpful to slowly increase your hours and duties over a period of time. This can be discussed further with your doctor, your Macmillan Gynaecology Oncology Clinical Nurse Specialist or GP. Remember the return to normal life takes time, it is a gradual process and involves a period of readjustment and will be individual to you. When can I start driving again? Returning to driving will vary between 4-6 weeks. 17

18 You need to be able to fully concentrate, make an emergency stop and look over your shoulder to manoeuvre. It is a good idea to check your insurance policy. Follow up Your follow up appointment will involve clinical assessment and regular vaginal examination. Your first appointment in the outpatient department will be two-three weeks after your operation. If further treatment is necessary it will be discussed at this point. You will receive a vaginal examination to check the healing and a smear from the top of the vagina. You will be seen at the specialist centre (Royal Preston Hospital), regularly for the next five years. Future pregnancy Following this treatment, there is no guarantee of a successful pregnancy. If you become pregnant there is an increased risk of miscarriage and also an increased risk of going into premature labour. As soon as you discover you are pregnant, you will need to see your GP. You will then be referred to an obstetrician and hospital with neonatal facilities (Special Care Baby Unit). At thirty eight weeks gestation you will need a caesarean section, which will require a midline incision (up and down). Contact details for Lancashire Teaching Hospitals We hope that this booklet answers most of your questions but, if you have any further queries or concerns, please do not hesitate to contact us: Your Macmillan Gynaecology Oncology Clinical Nurse Specialist is:. Tel No: Monday to Friday (8 am to 5 pm). 18

19 You may reach an answer phone, but please leave a message and your call will be returned as soon as possible. You may also contact the following department for advice: Gynaecology Out Patient Department: Monday to Friday (9 am to 5 pm). Outside of this time, if you have concerns, you may also contact the following department for advice: Gynaecology Ward: Clinical Trials A clinical trial may be discussed with you as a potential option for treatment. This discussion does not commit you to taking part. You may also want to ask your doctor or Macmillan gynaecology oncology nurse specialist if there are any clinical trials available for which you might be suitable. Further Support: There are many organisations that provide information, support and advice. These include: Macmillan Cancer Support Tel: Jo s Trust (Cervical Cancer) Tel:

20 Vine House (Cancer Advice, Information and Day Centre) 22 Cromwell Road Ribbleton Preston Tel: Croston House (Cancer Advice, Information and Day Centre) 113 Croston Road Garstang PR3 1HB Tel:

21 NOTES Please use this page to note down any additional questions you may have. 21

22 Sources of further information Lancashire Teaching Hospitals NHS Foundation Trust is not responsible for the content of external internet sites. Please ask if you would like help in understanding this information. This information can be made available in large print and in other languages. Questions about cancer? We re here to help, the LTH Cancer Information & Support Service is open to anyone affected by cancer and is situated at both CDH & RPH. Contact us on or Illustration taken with their permission from CancerHelp UK, the patient information website of Cancer Research UK: Department: Oncology Directorate: Womens health Production date: August 2014 Review date: August 2016 LTHTR/C/2014April.14