Cystectomy A Guide for Patients and Family Department of Urology, Forth Valley NHS 1
This leaflet has been produced to give you general information about the cystectomy procedure. The leaflet should answer most of your questions. It is not meant to replace the discussion between you and your doctor, but may act as a starting point for your discussion. If after reading it you have any concerns or require further explanation please discuss this with a member of the health care team who has been caring for you. What is a Cystectomy? A cystectomy is an operation in which the urinary bladder is removed. The aim of the operation is to cure your bladder cancer and to prevent progression of the disease and its spread to other organs. Surgery can also precisely stage the cancer and control bothersome symptoms associated with the tumour. Why is a cystectomy necessary? A cystectomy is being recommended as treatment for your bladder cancer. Before recommending surgery your case will have been discussed at a multi-disciplinary team meeting (MDT). This team is made up of a group of doctors and nurses who specialise in Urological cancers. A consensus will have been reached as to the best options for you. Your specialist will then explain in detail what these treatment options are. The final decision will be arrived once you have had a chance to discuss these options and ask any questions you may have. What Are The Alternatives? There may be other ways of treating the cancer in your bladder such as chemotherapy (medicines) and radiotherapy (x-ray treatment). The specialist teams in the hospital will have already discussed this with you. Chemotherapy is usually offered in addition to surgery or radiotherapy. It is not usually considered to be a cure for bladder cancer on its own. You may wish to choose no treatment. Under these circumstances it is possible the cancer will continue to grow and some cancer cells may spread to other parts of the body making further treatments to cure the cancer unfeasible. 2
What exactly is done at the operation? In men the prostate gland and seminal vesicles are also removed when a cystectomy is performed. The prostate is the gland situated beneath the bladder and produces a fluid which forms part of the semen. The seminal vesicles are attached to the prostate and store semen. In women the uterus (womb), the ovaries and a section of the vagina are removed along with the bladder. In pre-menopausal women the ovaries can be preserved. Internal lymph nodes that lie within your pelvis are also removed at the time of your operation. In addition the urethra (the tube which drains urine from the bladder) may need to be removed but this is not always essential. Following the removal of the bladder, it is necessary for the surgeon to create an alternative way of collecting urine. There are two possible options that may be offered to you - an ileal conduit or a neobladder. What is an Ileal Conduit? In this operation the ureters (the tubes that drain urine from the kidneys to the bladder) are disconnected from the bladder and then connected to a short piece of your bowel that is isolated from the rest of your intestine. This is then brought to the skin surface, usually on the right side of your abdomen. The end of the bowel that opens onto your abdomen is known as a stoma or urostomy. Your urine then empties through the stoma into a small external bag. What is a Neo-Bladder? This is a new bladder formed from a 55cm section of your bowel. This is attached internally to the ureters and to the urethra. This enables you to pass urine through the urethra. The section of bowel is made into a pouch and the rest of the bowel is sewn up so that it works as it did before the operation. The neo-bladder operation is not suitable for all patients. If you have had previous radiotherapy, have a history of bowel abnormalities or have cancer close to the urethra, then it may not be possible for you to have this procedure. This type of operation is not always recommended in those patients older than 70 years as the side effects tend to be greater. There is a possibility that the surgeon may not be able to perform a neo-bladder and may have to form an ileal conduit instead. You will therefore be prepared for both operations at the time of your surgery. 3
What are the Risks? These are risks common to all types of major surgery. For this reason you will have an extensive assessment to determine if there is anything that can be done prior to the operation to improve your fitness for surgery. You should be reassured that although these complications are well recognized, the majority of patients do not suffer any problems after a urological procedure. The risks include: Bleeding that may require a blood transfusion. Pain. You will be given regular pain relief although it is important to tell staff if you are experiencing any pain that is not controlled, as this may slow your recovery. Chest Infection. You may be treated by a physiotherapist who will teach you deep breathing exercises to reduce the risk of this occurring. Deep Vein Thrombosis - DVT (a blood clot forming in one of the veins in your leg). You will be given a pair of surgical stockings to wear to help blood circulation in the legs and an injection to thin the blood slightly to prevent clots from forming. You will be encouraged to get up and about as soon as possible and may be taught a range of leg exercises to minimize the chance of this complication. Poor wound healing. Bowel upset. Your bowel will not function normally for a number of days after your operation. Bloating of the abdomen and vomiting may occur in the initial stages and your bowel habit may be erratic in the first few weeks. Other risks include; Need for further surgery. There is a small risk that the ureters will narrow where they have been joined to the bowel. This can happen following both neo-bladder and ileal conduit surgery. It happens in approximately 5% of cases and requires an additional operation to correct it. There is a very small chance (approx 1 in 100) that the bowel may leak following cystectomy and further surgery would also be required to repair such leaks. There is an increased risk of death (approx 1 in 50) in the month or so following the operation. 4
A cystectomy will make permanent changes to your body. Those changes will affect; Sexual and reproductive function. In men the prostate and the seminal vesicles are removed with the bladder. The nerves that supply the penis run under this gland and although these nerves can be preserved in those patients with smaller cancers, it is likely that many men will be left impotent after this operation. There are medications and devices that can help with erections. Because the prostate is removed there is no ejaculation although the sensation of orgasm should not be affected. In women the uterus is removed, although the ovaries can be preserved in premenopausal women. The cervix and the top of the vagina are removed although this usually makes little difference to intercourse. In more advanced tumours a strip of vagina may need to be removed which will affect the size of the vagina. This can be improved after the operation with dilators if required. Urinary function. Once the bladder is removed the surgeon needs to decide how the urine will drain from the kidneys. An ileal conduit diverts the urine from the kidneys into a loop of bowel and into a bag on the side of your abdomen. A neo-bladder will store urine internally until it is emptied. At first the new bladder will be smaller and need emptying more often than normal. Bowel function. Occasionally there may be a change in the frequency of your bowel motions. They may also be a little looser than prior to the operation. This is because of the shortening of the bowel after removing a portion for the operation. Altered body image. Your self-image may be altered by a stoma. Preparing for the Operation You will be given an appointment to attend the pre-operative assessment clinic. Here you will have a number of investigations including blood tests and an ECG (heart tracing). At this assessment you will be asked to make arrangements regarding your transport to and from hospital. It would be a good opportunity to think about and discuss any issues you may have at home, for example, who will do your shopping or heavy housework when you are discharged home? You will be advised about any changes you need to make to your medication. Please inform the nurse if you take Warfarin, Aspirin or any medication to thin your blood. 5
Your specialist will consent you for your operation and answer any final questions you may have. Before your operation, you will be seen by a Stoma Specialist Nurse, who will discuss the position of your urostomy. This will happen even if you have elected to have a neobladder formation. A mark will be placed on the abdomen where your urostomy will be sited (if you should need one). It is important that this happen whilst you are awake to ensure that it is placed in the best position for you. This will mean it should be away from any skin creases when you sit up, be away from any scars you may have and be somewhere that you can easily see. For patients undergoing this type of surgery, there are two main aims: To improve the recovery and minimise stay in hospital To achieve the optimum recovery following surgery, patients are encouraged to work together, in partnership with the Urology team. Other important elements to recovery are: 1. Pre-operative assessment and planning. 2. Good care planning and pain relief post-operatively. 3. Early mobilisation (getting patients out of bed and moving around) 4. Early return to eating and drinking. Preparing for Surgery The day before surgery you will be able to eat and drink as normal, you will also be given high carbohydrate drinks. These are an essential part of your care and help boost your energy prior to surgery. You will be given instructions on how and when to take these. Once you are in hospital, you will be given a blood thinning injection, to help reduce your risk of blood clots. What Happens To Me When I Arrive At The Ward? You will be admitted on the day of surgery. We will ask that you administer an enema on the evening prior to your admission. This will help clear you bowels in preparation for the operation. On the Day of the Procedure On the morning of your surgery you will need to have a further carbohydrate drink then have nothing to drink for approximately 2 hours before your operation. 6
The anaesthetist will visit you and discuss your anaesthetic and post-operative pain relief. If you have any questions about this you will have time to ask. Before going to the operating theatre, you will be asked to change into a theatre gown. Any make-up, nail varnish, jewellery (except your wedding ring), dentures and contact lenses must be removed. Your operation will take about 5-6 hours and is performed under general anaesthetic (you are completely asleep during all of this time). What Happens After The Procedure? A bed will be booked for you in the High Dependency Unit (HDU) or intensive care unit (ICU) where your condition can be monitored closely. This is often necessary after major surgery, as you will have spent a long time under anaesthetic. You will spend 24 to 72 hours here before returning to the ward. To reduce pain after the operation you will be given regular painkillers. The anaesthetist will have discussed this with you and will have decided on either: A pain killer device that you control releases painkillers into your blood stream through a drip. This is called Patient Controlled Analgesia (PCA). An epidural by which pain killers and local anaesthetic are given directly into the spinal nerve system. This involves inserting a very fine tube into your back at the time of you operation through which these drugs are given. After a few days your need for these drugs will have reduced greatly and you will then be given pain killing tablets or injections. You will have a drip running into a vein in your neck. This is to give you fluids until you are able to drink normally. The passage of wind via the rectum is the sign that things are returning to normal but you can usually start to have fluids within a day or two of the operation and start diet within 2 days. You will have a dressing over the wound on your abdomen. There will be a drain placed to the side of the wound to collect any blood or fluid remaining after the operation. This will be removed about 4 to 6 days after your surgery. There will also be two further tubes (stents) which pass through the urostomy or neobladder. These will be removed a day or so before you go home. In men a catheter may also be left temporarily in the urethra if you have had an ileal conduit operation. This acts as a second drain and is usually removed within a day or two of your operation. A neo-bladder is drained initially using two catheters. operation, one through the urethra as normal and a second catheter is placed through the abdomen into the bladder 7
(suprapubic catheter). These catheters allow the neobladder to be gently washed out every 4 hours, to ensure there is no build up of mucous. This is because the new bladder is made from bowel which produces mucous. This mucous can accumulate and sometimes make it difficult to pass urine. After your operation you will be seen by the physiotherapists and you will be expected to commence deep breathing and leg exercises, it is important for you to follow their instructions to reduce your risk of chest infection and blood clots. You will be given a spirometer to help expand your lungs and the nursing staff will show you how to use this. After your operation you will be encouraged to move around in bed and will be up to sit and mobilising as able over the next day or two. When you come back from theatre you will be commenced on high protein drinks which will continue until you are eating and drinking normally. It is important that you eat and drink early after your operation as your body benefits from optimal nutrition and this will help your overall recovery. Preparation for Home Following Ileal Loop Diversion When you are eating and drinking and the various drain tubes have been removed, you will begin caring for your urostomy. Once you are confident in looking after this we will plan for your discharge home. The stoma nurse will ensure that you have everything you need for your urostomy when you get home and will explain how to get additional supplies. The ward nurses will arrange for the district nurse to visit you at home during your initial recovery period. Discharge Arrangements It is necessary to arrange for a responsible adult to collect you from hospital and transport you home. A letter will be sent to your GP explaining what has happened during your stay in hospital and you will be given a supply of any new medication which may have been started whilst you were in hospital. A sick note may be obtained to cover your stay in hospital. Further sick notes can be obtained from your GP. You will be telephoned at home after 24 hours by a nurse to ensure there are no problems. You will be notified of any necessary further follow-up, including an outpatient clinic appointment to discuss your histology results and any further treatment required, before going home and any necessary appointments will be sent to you via a letter to your home address. Longer term we will also want to regularly review your condition over the next months and years. 8
Day To Day Living Recovery time after abdominal surgery varies but generally you should feel improvements after about 6 to 12 weeks. During the first 6 weeks after your operation you should bear the following in mind: You should NOT drive a car. After the 6 weeks you should consider if you would feel comfortable to do an emergency stop without difficulty or pain. You also need to contact your insurance company to check that you are covered to start driving again. You should NOT attempt to lift or move heavy objects or perform heavy household work. You should ask your surgeon when you can return to work. This may vary depending on the type of job you do. You can obtain a sick note for the time you are expected to be off work before leaving the ward. You can have a bath or shower as soon as the drains and stents are removed. You should not use perfumed soaps or talcum powder until your wound is well healed. After discharge from hospital you may require the mucous in your bladder to be washed out and that will be done at home by the district nurses. Preparation for Home Following Neo Bladder Formation The sensation when the neo-bladder is full is different from the usual feeling of the bladder being full. Some people have a feeling of fullness in the abdomen. Others feel like they have wind. In the first few weeks, you will need to get into a routine of emptying your bladder at set intervals, usually every 2 to 3 hours to begin with (including overnight which means you may have to set an alarm clock to wake you). The time intervals will increase as the size and capacity of the neobladder increases. To help you push the urine out and fully empty your bladder you may need to learn to relax the pelvic floor muscles (these muscles support the bladder and bowel and the urethra and the rectum pass through them) and try to tense your abdominal muscles or apply some gentle pressure to your abdomen with your hands. Once you are confident in emptying the bladder we will plan for your discharge home. The catheters and stents will be removed following an x-ray that demonstrates that the neobladder has healed and there is no leak internally. This is usually performed 10 days after the operation. If there are no leaks, then the catheter will be removed. If a leak is seen, the catheter will remain in place and the x-ray repeated. It is sometimes necessary to go home with the catheter in place. The nurses will teach you how to look after this and a district nurse will visit you at home. Once the catheter is removed you may experience some leakage of urine (incontinence). It is common to leak some urine at first for the following reasons: This could be because of weak pelvic floor muscles. The pelvic floor muscles can be weakened during your operation so you will be encouraged to perform pelvic floor exercises to help strengthen them and reduce the amount of leakage. 9
The valve that keeps you dry is very close to the area of your surgery. This may be swollen after the operation and will take some time to resolve. Urine leakage/incontinence occurs in the first few weeks but gradually settles with time. Continence pads may need to be worn to manage the leakage. Usually people are dry during the day first and the leakage is more noticeable at night when you are asleep and more relaxed. We recommend setting an alarm clock at night so you can empty the neobladder at regular intervals for the first few weeks. The time intervals gradually improve as the capacity of the bladder increases and night time continence follows. A small number of people (up to 5%) may be left with some long-term problems with incontinence after the operation and may need extra surgery if the leakage is an ongoing problem and does not seem to be resolving. Because of the change in anatomy it is sometimes difficult to pass urine initially in order to completely empty the bladder. Because of this you will be taught how to pass a catheter into the bladder to aid emptying in the first few weeks after your operation. In most cases this is just short term as the new bladder relearns to fill and empty, but in rare cases may have to be done long term. If you are unable or unwilling to do this you may be advised not to have a neo-bladder. About 30% of men will need to perform this technique as a long term measure to empty the neobladder. It is more common for women to need to empty the neo-bladder this way. If there is a Problem? If you experience any problems following the procedure, please contact your GP or Ward B31 for advice. Ward B31, Forth Valley Royal Hospital (Direct Dial) 01324 567537 Urology Specialist Nurses: 01324 566889 (Available Monday-Friday 9-4pm) Stoma Care Specialist Nurses: 01324 566299 (Available Monday-Friday 9-4pm) NHS 24: 08454 242424 FURTHER INFORMATION & SUPPORT MacMillan Money Matters: Stirling - 01786 442694 Alloa - 01259 452620 Falkirk 01324 504087 Macmillan Cancer Support (provides specialist advice through Macmillan nurses and doctors and financial grants for people with cancer and their families) 89 Albert Embankment, London, SE1 7 UQ 0808 808202 www.macmillan.org.uk 10