Bladder cancer information centre
The bladder
The bladder is a hollow, muscular, balloon-like organ that collects and stores urine. It is in the lower part of the abdomen (the pelvis). Urine consists of water and waste products not needed by the body.
The bladder is lined with a urine-proof membrane which stops the urine being absorbed back into the body. The cells of this membrane are called transitional cells or urothelial cells, and the lining membrane is called the urothelium.
The two kidneys produce urine, which is carried to the bladder by two tubes called ureters. The bladder stores the urine, and when it is full enough, nerve signals are sent to the brain. To get rid of the urine, the muscle of the bladder contracts, forcing the urine out of the body through a tube called the urethra.
In women the urethra is a very short tube in front of the vagina. In men the tube is longer and passes through the prostate gland and the penis.
Types of bladder cancer
Nearly all cancers of the bladder start in the layer of cells which form the lining (urothelium) of the bladder. These are called transitional cell or urothelial cell cancers. They come in a very wide range of forms and can behave in very different ways. For example, they may occur as a small, wart-like growth on the inside of the bladder, which can be removed in a simple operation and may never come back. Sometimes they can form a large tumour which grows into the muscle wall of the bladder and needs major surgery.
Other, rarer, types of bladder cancer are squamous cell cancer and adenocarcinoma. Squamous cell cancer starts from one of the types of cell in the bladder lining. Adenocarcinoma starts from glandular cells which produce mucus.
Some bladder cancers form warty outgrowths or mushroom-like growths on the inside lining of the bladder. These are called papillary cancers. They have a short stem attached to the lining of the bladder. Sometimes they go on to spread into the wall of the bladder.
If a bladder cancer only affects the inner lining of the bladder, it is known as a superficial cancer. If it has spread into the muscle wall of the bladder, it is called an invasive cancer.
Causes of bladder cancer
Some of the possible causes of cancer of the bladder are now known, but research is going on all the time to find out more.
Bladder cancer occurs most commonly in people between 50 and 70 years of age. It is twice as common in men as in women. Bladder cancer is very rare in men and women younger than 40 years of age.
Some things are known to increase the risk of developing bladder cancer.
Cigarette smoking is the most important factor in the UK. Specific chemicals that cause bladder cancer have been found in cigarette smoke. It takes a long time for the chemicals to cause bladder cancer, and the more cigarettes smoked, the greater the risk.
The other main cause of bladder cancer is exposure to certain chemicals at work: for example, those used in dye factories, rubber, gasworks, plastics and other chemical industries. These chemicals were banned in the UK in 1967. However, it can take about 25 years after exposure to the chemicals for bladder cancers to develop. If you think that you were exposed to certain chemicals through your work, let your cancer doctor know. You may be able to claim Industrial Disease Benefit from the Department of Social Security.
In parts of the world where bilharzia (a chronic parasitic infection of the bladder) is common, there are many cases of cancer of the bladder. This infection does not occur in the UK, but can affect people who have lived in Africa.
Symptoms of bladder cancer
The most common symptom of cancer of the bladder is blood in the urine (known as haematuria). This usually occurs suddenly and is generally not painful. The blood may be there one day and disappear the next, but eventually it comes back. Sometimes blood clots can form, and may cause painful muscle spasms in the bladder. The amount of blood is not related to the extent of the cancer.
Some people may have a burning feeling when they pass urine, and need to pass urine often. However, these are also symptoms of bladder irritation and will usually be due to an infection rather than cancer. If the symptoms continue and do not get better with antibiotics, further tests may be necessary.
If you see any blood in your urine, it is important to see your doctor as soon as possible, although this symptom is more likely to be due to conditions other than cancer, such as an infection or stones in the kidney or bladder.
How bladder cancer is diagnosed
Usually, you begin by seeing your GP, who will examine you and ask you to give a urine sample. The examination may include an internal examination of the back passage (rectum) in men, and an internal examination of the rectum and vagina in women. As the rectum and vagina are so close to the bladder, this allows the doctor to feel for any lumps or thickening in the bladder.
The urine sample will be sent to a laboratory to be checked under a microscope for any cancer cells. Your GP may also arrange for further tests or x-rays. They will refer you to hospital for these tests, and for specialist advice and treatment from a urologist, if this is needed. Urologists are doctors who specialise in treating illnesses of the urinary system.
At the hospital
The urologist will ask you about your medical history and current symptoms. They will examine you by feeling your abdomen and bladder. You may have another internal examination and may give another urine sample.
Cystoscopy and biopsy
The most important test is a cystoscopy. It can be done while you are under a local or general anaesthetic.
In most cases it is done first under local anaesthetic. An anaesthetic jelly is squeezed into the urethra and you will wait a few minutes for it to work. A small, flexible, fibre-optic tube with a light at the end (cystoscope) is then passed into the urethra. This allows the doctor to look at the whole lining of the bladder and urethra. The whole test takes a few minutes and you can usually go home straight afterwards. You may have some soreness or mild pain when you pass urine for the first time. However, there are not usually any other effects.
If any abnormal area that could be a bladder cancer is seen, you will be invited back to the hospital for a cystoscopy on another day. This is normally done as a day-case under a general anaesthetic. Your specialist will give you instructions on how to prepare for the test. You may have a blood test and chest x-ray to make sure you are fit enough to have the anaesthetic. Under the anaesthetic, the doctor can thoroughly examine the inside of the bladder and can take samples (tissue biopsies) of any abnormal areas. Any small, mushroom-like growths can be snipped off, as they could be cancer. You can usually go home the same day. The tissue samples are sent to a pathologist who examines them under a microscope in a laboratory.
If the biopsy shows that you have cancer of the bladder, you will be asked to go back to the hospital to have the cancer removed.
Further tests for bladder cancer
If the tests show that you have cancer of the bladder, the specialist doctor at the hospital (the urologist) will want you to have some further tests to see if the cancer has spread. The tests also help the doctor to decide on the best type of treatment for you.
Blood tests
Samples of your blood will be taken to check your general health, the number of cells in your blood (blood count), and to see how well your kidneys and liver are working.
Intravenous urogram (IVU)
This test is also known as an intravenous pyelogram (IVP). It is done in the hospital x-ray department and takes about an hour.
A dye is injected into a vein, usually in the arm, and goes through the bloodstream to the kidneys. The doctor can watch the passage of the dye on an x-ray screen and see any abnormalities in the kidneys, bladder and the rest of the urinary system.
The dye will probably make you feel hot and flushed for a few minutes, but this feeling gradually disappears. You may feel some discomfort in your abdomen, but this will only be for a short time. You should be able to go home as soon as the test is over.
CT scan (computerised tomography scan)
A CT scan checks how deeply the cancer has spread into the wall of the bladder and whether it has spread into the area around the bladder. A series of x-ray pictures is taken of the pelvis and fed into a computer to give a detailed picture of the inside of the body.
You will be given a special liquid to drink a few hours before your test, and again, in the x-ray department. This liquid shows up on x-ray and makes sure that a clear picture is taken.
Once you are lying comfortably on the couch, the scan can be taken. The scan itself is painless. You have to lie still for up to 10–15 minutes.
Most people are able to go home as soon as their scan is over.
MRI scan (magnetic resonance imaging scan)
This test is similar to a CT scan, but uses magnetism instead of x-rays to build up cross-sectional pictures of your body. You cannot have an MRI scan if you have any metal in your body, such as heart pacemakers or certain types of surgical clips.
During the test, you will be asked to lie very still on a couch inside a long tube for about 30 minutes. It can be slightly uncomfortable and some people feel claustrophobic during the scan. It is also very noisy, but you will be given earplugs or headphones to wear. You can usually take someone with you into the room to keep you company.
Ultrasound scan
In this test, sound waves make up a picture of the inside of the body. You may have scans of your bladder and pelvis. The scan will be done in the hospital scanning department.
Before your test, you will be asked to drink plenty of fluids so that your bladder is full and can be seen clearly. Once you are lying comfortably on your back, a special gel is spread over the skin of your abdomen. A small device, like a microphone, is passed over the area. The echoes are made into a picture by a computer. The scan is completely painless. It takes about 15–20 minutes. Once the scan is over, you will be able to empty your bladder. The scan department staff can show you a nearby toilet.
Waiting for your test results
Grading and staging of bladder cancer
Grading
Grading refers to the appearance of the cancer cells under the microscope. The grade gives an idea of how quickly the cancer may develop. The most common grading system uses three grades:
- grade 1 (low grade)
- grade 2 (moderate grade)
- grade 3 (high grade)
Low grade means that the cancer cells look very much like normal bladder cells. They are usually slowly growing and less likely to spread. In high-grade tumours the cells look very abnormal. They are likely to grow more quickly and are more likely to spread.
Staging
The stage of a cancer describes how big the cancer is and whether it has spread. Once your doctors know the stage of the cancer they can decide on the most appropriate treatment for you.
The most commonly used staging system is called the TNM system:
- T refers to the tumour size.
- N refers to whether lymph nodes are affected.
- M refers to whether the cancer has spread to other parts of the body (metastases).
Tumour size (T)
The diagram below shows different tumour sizes in the bladder.
- CIS (carcinoma in situ) means that cancer cells are in the inside layer of the bladder lining. However, they are a type that are quickly growing (grade 3) and are very likely to spread into the deeper layers of the bladder, unless they are effectively treated.
- Ta The cancer is a small area of cancer just in the bladder lining.
- T1 The cancer has started to grow into the connective tissue beneath the bladder lining.
- T2 The cancer has started to grow into the muscle of the bladder wall under the connective tissue layer.
- T3a The cancer has grown through the whole layer of muscle in the bladder
- T3b The cancer has grown through the muscle layer into the fat layer beneath.
- T4 The cancer has spread outside the bladder to the prostate, vagina or other organs in the pelvic area.
Stages Ta or T1 are called early or superficial bladder cancer.
Stages T2 or T3 are called invasive bladder cancer.
Stage T4 is called locally advanced bladder cancer. The cancer has spread into the tissue around the bladder.
Lymph nodes (N)
The N refers to whether the cancer cells have spread into the lymph nodes close to the bladder. There are four lymph node stages. These are:
- N0 There are no cancer cells in any lymph nodes.
- N1 There are cancer cells in one lymph node smaller than 2cm across.
- N2 There are cancer cells in one affected lymph node larger than 2cm, but smaller than 5cm, or more than one node affected, but all of them smaller than 5cm across.
- N3 There are cancer cells in at least one affected lymph node larger than 5cm across.
If the cancer cells have spread to the lymph nodes, the nodes are said to be positive.
Metastases (M)
If the cancer cells have not spread, this is described as M0.
If cancer cells have spread to other parts of the body it is said to be M1. If bladder cancer spreads it is most likely to go to the bones, the lungs or the liver. If the cancer has spread it is called secondary or metastatic bladder cancer.
Treatment for bladder cancer
How treatment is planned
The treatment for bladder cancer depends on the type of cancer and the stage and grade. A team of doctors and other health care staff will plan your treatment. This is known as a multidisciplinary team. This is a team of staff who specialise in treating cancer of the urinary system and in giving information and support. It will normally include:
- urologists (surgeons who are experienced in bladder surgery)
- specialist nurses, who give information and support
- oncologists – doctors who have experience in bladder cancer treatment using chemotherapy, radiotherapy and biological therapies
- radiologists, who help to analyse x-rays
- pathologists, who advise on the type and extent of the cancer.
Other staff will also be available to help you if necessary, such as:
- physiotherapists
- counsellors and psychologists
- social workers.
Your doctor will discuss with you the best treatment in your particular situation. If you have any questions, don't be afraid to ask your doctor or the nurse looking after you. It often helps to make a list of the questions you want to ask and to take a close relative or friend with you to remind you of the things you want to know, but can easily forget. You will usually be given the contact number of a member of staff you can call if you need to clarify information.
Giving consent
Before you have any treatment, your doctor will explain the aims of the treatment to you. They will usually ask you to sign a form saying that you give your permission (consent) for the hospital staff to give you the treatment. No medical treatment can be given without your consent, and before you are asked to sign the form you should have been given full information about:
- the type and extent of the treatment you are advised to have
- the advantages and disadvantages of the treatment
- any other possible treatments that may be available
- any significant risks or side effects of the treatment.
If you do not understand what you have been told, let the staff know straight away so that they can explain again. Some cancer treatments are complex, so it is not unusual for people to need repeated explanations.
Patients often feel that the hospital staff are too busy to answer their questions, but it is important for you to be aware of how the treatment is likely to affect you. The staff should be willing to make time for you to ask questions.
You can always ask for more time to decide about the treatment if you feel that you can’t make a decision when it is first explained to you.
You are also free to choose not to have the treatment. The staff can explain what may happen if you do not have it. It is essential to tell a doctor, or the nurse in charge, so that they can record your decision in your medical notes. You do not have to give a reason for not wanting to have treatment. However, it can be helpful to let the staff know your concerns so that they can give you the best advice.
Treatment for carcinoma in situ
Carcinoma in situ, or CIS, is a very early bladder cancer. As it can be quickly growing, the treatment may be more intensive than for other types of early bladder cancer. The usual treatment is removal of the area of CIS by surgery. The surgery is followed by treatment of the inside of the bladder (intravesical therapy) with either chemotherapy or BCG. This can get rid of the CIS in up to 60% (6 in 10) of people.
If the CIS does not go away completely or comes back after treatment, further treatment with surgery, chemotherapy or BCG will be needed. Your doctor can talk to you about the most appropriate treatment in your situation.
Treatment for early (superficial) bladder cancer
Superficial cancers may be single or there may be more than one. They are usually removed surgically, using a cystoscope.
If your surgery shows that the cancer is beginning to affect the deeper levels of the bladder lining, you may be advised to have further treatment. Anti-cancer drugs – chemotherapy or immunotherapy – may be put into the bladder to try to reduce the chance of the cancer coming back (recurring). This may be given immediately after the surgery or up to a few weeks later.
Surgery
Before surgery you will have a blood test to check your general health. You will also have a chance to discuss the surgery with a specialist nurse or a doctor. You will have a medical examination to make sure that you are fit enough to have an anaesthetic. You may be admitted to the surgical ward on the day of surgery, or the day before. The anaesthetist will talk to you about your operation and ask you to sign a consent form. You may also be asked by the research nurse for permission for blood samples and some of the tissue taken at the time of surgery to be kept and used for research. If you agree to this, you will be asked to sign a second consent form.
The operation
Many tumours in the bladder are the small papillary type. These can usually be removed very easily using a cystoscope. You will be given a general anaesthetic and a cystoscope will be inserted into the bladder. The tumour is snipped off at the stem and the area is burned (cauterised), using a mild electrical current to limit bleeding. This procedure is known as a transurethral resection of a bladder tumour (TURBT) and in this way several tumours can be treated at the same time, if necessary.
The operation usually takes from 20 minutes to an hour. Chemotherapy may be given into the bladder immediately after surgery.
After the operation
When you go back to the ward you will have a thin, flexible tube (a catheter) in your bladder, which drains your urine into a bag. It may make you feel as though you want to pass urine. Your urine will be bloodstained at first. Large bags of fluid may also be used to flush out the bladder continuously. This is to make sure that clots of blood do not form and block the urethra.
Once you are drinking normally and your urine looks clear, the catheter will be taken out. This is not painful but may feel a little uncomfortable. Once your catheter has been removed and your urine is no longer bloodstained, you will be allowed to go home. This is usually about 2–3 days after the operation.
Possible risks of surgery
Removing superficial bladder cancers is a safe procedure. However, it can have some risks. These are outlined below.
Urine infection 5–10 out of every 100 patients (5–10%) may get a urine infection. This may be while they are still in hospital or after they go home. Signs of an infection include: feeling cold, shivery, hot or sweaty; feeling generally ill; or your urine becoming smelly or cloudy. If you think you may have an infection, you can take a urine sample to your doctor for testing.
Bleeding for more than a few days occurs in up to 5 out of 100 patients (5%) and a blood transfusion may be needed. If the bleeding does not stop on its own, another operation to cauterize the bleeding area may need to be done under anaesthetic.
Damage to the bladder A hole may be made in the bladder during surgery. This happens in up to 5 out of 100 patients (5%). If this happens, you may need to have a catheter in the bladder for up to 10 days to allow the hole to heal. If the hole does not heal in that time, you may need to have an operation to seal it. This is done in an operation that involves making a cut in the abdomen. Your doctor or nurse will explain this procedure if it is needed.
After cystoscopy – follow-up
After this type of treatment, you will need to have regular follow-up cystoscopies. This is because the tumours will come back in between 5–7 out of every 10 people (50 – 70%). The cystoscopies are usually done every three to four months at first. Most follow-up cystoscopies are done in the outpatients department under local anaesthetic.
If the cancer comes back, the tumours can usually be surgically removed while they are still in the early stages. However, some people may also have chemotherapy or BCG given directly into the bladder.
Intravesical chemotherapy
Intravesical chemotherapy is given directly into the bladder. The most commonly used drugs in this situation are mitomycin-C and epirubicin. The drugs are given into the bladder through a flexible tube (catheter). Giving chemotherapy in this way puts the drugs into direct contact with the cancer cells in the lining of the bladder. It also causes very few side effects, as very little gets into the bloodstream to affect the rest of the body. The drugs may be given once, immediately after the transurethral removal of the bladder tumour, or as a course of weekly treatments, for about six weeks.
Side effects of intravesical chemotherapy
Chemotherapy given directly into the bladder may cause inflammation of the bladder lining (cystitis). This can lead to soreness or pain and you may need to pass urine more often than normal. Your doctor can prescribe medicines to reduce this effect. Some drugs can also make the skin of the hand or perineum (the area between the openings to the bowel and bladder) sore if they come into contact with them. In about 1 in 100 (1%) people, a skin rash occurs and the treatment may need to be stopped.
Contraception
It is not advisable to become pregnant or father a child while having any of the chemotherapy drugs used to treat bladder cancer, as they may harm the developing foetus. It is important to use effective contraception during your treatment and for a year afterwards. You can discuss this with your doctor or specialist nurse.
Condoms should be used during sex within the first 48 hours after chemotherapy to protect your partner from any of the drug that may be present in semen or vaginal fluid.
Intravesical BCG
A vaccine called BCG can be put into the bladder. BCG is the vaccine used to prevent tuberculosis (TB). It is also an effective treatment for some superficial bladder cancers. BCG is a type of immunotherapy. Immunotherapy stimulates the body's immune system to destroy cancer cells.
The exact way this treatment works is not fully known, but it seems the vaccine can make the bladder react in a way that triggers the body's immune system to reduce or get rid of cancers.
BCG treatment is given in the urology outpatient department. It is usually given once a week, for six weeks.
The vaccine is a liquid that is given directly into the bladder through a tube (catheter). You should not pass urine for two hours afterwards, as the treatment is working during this time. For the next six hours, men should sit rather than stand when they pass urine. This is to avoid splashing, which might lead to infection.
It is important to avoid getting any urine on your hands. You will be asked to put bleach into the toilet bowl to destroy any live vaccine. Your nurses and doctor will give you instructions about this.
Side effects of BCG
During treatment you may have side effects, such as: blood in your urine; fever and chills; needing to pass urine often; pain in your joints; nausea and vomiting; pain when you pass urine; a cough; a skin rash and feeling very tired. These are common effects that almost always settle down on their own. However, if you have any of these, tell your doctor or nurse when you next see them.
It is very important to tell your doctor as soon as possible if you have joint pains, as this means treatment must be stopped immediately. About 1 in 100 patients (1%) may have continuing high temperatures (fever) due to infection with BCG. This is treated with specific antibiotics in the same way as TB itself.
It is important to let your doctor know about any other medicines you are taking, because drugs that suppress your immune system may interfere with how effective BCG is for your bladder cancer.
Contraception
It is not advisable to become pregnant or father a child while having BCG, as it may harm the developing foetus. It is important to use effective contraception during your treatment and for six weeks afterwards. You can discuss this with your doctor or specialist nurse.
Condoms should be used during sex within the first 48 hours after treatment to protect your partner from any of the drug that may be present in semen or vaginal fluid.
Repeated treatment with BCG
This treatment may need to be repeated at times over the next two or three years. If so, your doctor will arrange this with you.
Treatment for invasive bladder cancer
Surgery or radiotherapy
Surgery or radiotherapy may be used to treat invasive bladder cancers.
Surgery Some, or all, of the bladder may need to be removed. If the whole bladder is removed, you may need to have a new bladder made.
Radiotherapy may be used instead of surgery to try to avoid having to remove the bladder.
Some people may be offered a choice of having surgery or radiotherapy. This is because in some situations each treatment has the same chance of curing the cancer, but the benefits and disadvantages of the treatments are different.
Chemotherapy may be given into the vein to shrink the tumour before surgery or radiotherapy treatment. In some situations, the chemotherapy is given and the person is then monitored to see how well the treatment works, before deciding whether radiotherapy or surgery should be used.
Chemotherapy is also sometimes given into the vein after surgery, to reduce the risk of the tumour coming back.
Benefits and disadvantages of treatments
Surgery (total cystectomy)
- Benefits:
- The cancer may be completely cured
- Does not involve radiation, so avoids the side effects of radiotherapy, e.g. diarrhoea and cystitis
- There is no need for follow-up cystoscopies
- Disadvantages:
- Need 7–14 days in hospital for the operation and up to 3 months recovery time
- Needs an anaesthetic
- Need to wear a urostomy bag, learn to self-catheterise or learn to pass urine again
- Tiredness after the operation
- High risk of impotence in men and changes in sexual sensation in women.
- Risk of death related to the surgery (2 in 100)
Radiotherapy
- Benefits:
- Does not involve an operation
- No anaesthetic needed
- After treatment it is possible to pass urine normally
- Disadvantages:
- Need to attend hospital each weekday for 4-7 weeks for treatment
- Tiredness during and after treatment (may last some months)
- Diarrhoea may occur and cystitis is common during treatment (approximately 7 in 10)
- Possible long-term damage to bladder and rectum (2-8 in every 100)
- Risk of impotence in men (up to 3 in 10)
Just can't wait card
Some treatments for bladder cancer can make you want to go to the toilet more often. You may also feel that you can’t wait when you do want to go. A card is available that you can show to staff in shops or pubs etc. The card allows you to use their loos, without them asking awkward questions. You can get the cards from Incontact.
Surgery for invasive bladder cancer
If a tumour is too large to be removed by cystoscope, or if it has started to grow through the bladder wall, it may be necessary to remove all or part of the bladder. Your doctor can discuss with you which is the most appropriate type of operation for your particular situation.
Partial cystectomy
If part of the bladder is removed, the operation is called a partial cystectomy. After this operation you will be able to pass urine as usual, but as your bladder will be smaller, and will hold less urine, you may need to pass urine more often.
Cystectomy
If the whole bladder is removed, the operation is called a complete cystectomy. In men, the prostate gland, part of the urethra, and the lymph nodes close to the bladder are also removed. In women, as well as the bladder, the womb, cervix, nearby lymph nodes and part of the urethra are removed. After a cystectomy women will not be able to have children.
Men usually become impotent (are unable to get or maintain an erection) and women may find that sensations during sexual intercourse are different from before the operation. The effects of surgery on your sex life are explained in more detail later on this section.
A new storage place for urine will need to be created using a urostomy, bladder reconstruction, continent urinary diversion or uro-rectal conduit.
Urostomy
The most common way of making a new drainage channel for urine is to make a urostomy. While you are under a general anaesthetic, the doctor will remove a section of your small bowel, join the two ureters to one end of it and bring the other, open end out through the skin of your abdomen.
This operation makes an ileal conduit. It is called this because the piece of small bowel (ileum) acts as a channel (conduit) to take the urine from the ureters and bring it to the surface of the abdomen. The small hole on the surface of the abdomen, through which the urine now passes out of the body, is called a stoma.
A flat, watertight bag is placed over the opening on the abdomen (stoma) to collect the urine. It is kept in place with a special type of glue. The bag will fill with urine and will need to be emptied regularly.
See further information on living with a urostomy.
Bladder reconstruction
Sometimes the bladder can be replaced by using a piece of the small or large intestine to make a completely new bladder. This operation is known as bladder reconstruction, and it can be done in different ways.
Usually your doctor will remove a piece of your bowel, make it into a balloon-shaped sac and stitch it to the top of your urethra. The ureters are stitched into this new bladder so that urine drains directly into it from the kidneys. It is then possible for most people to learn how to pass urine through the urethra, rather than needing to wear a stoma bag or use a catheter.
The new bladder is emptied by flexing your abdominal muscles, but you will need to remember to empty it, as you will have lost the nerves that tell you when your bladder is full. Sometimes this nerve loss can lead to incontinence (leaking of urine), especially when you are asleep. Twenty to 30% of patients (2 or 3 out of every 10 people) will have some incontinence.
Bladder reconstruction is not suitable for everyone. Your doctor can advise whether it is possible for you to have bladder reconstruction. Most people are able to learn how to pass urine through the urethra. However, some people find it difficult and need to drain the urine regularly by passing a catheter into the urethra.
Continent urinary diversion
Sometimes, a continent urinary diversion can be made. During an operation a pouch is made in the abdomen, using a piece of bowel. The ureters are attached to the piece of bowel. The pouch holds the urine. The end of the piece of bowel is brought out onto the surface of the abdomen to create a stoma. A small plastic tube (catheter) can be passed through the stoma into the pouch about 4 or 5 times a day to drain the urine. This is called self-catheterisation. Although this can feel daunting at first, most people manage very well with self-catheterisation and care of their stoma. The main advantage of this type of surgery is that it is not necessary to wear a stoma bag.
Uro-rectal conduit
It is sometimes possible to divert the urine into the rectum so that both the urine and the stool are passed through the rectum (back passage). If this is done the person does not need a urostomy bag, or to pass a catheter to drain the urine.
After surgery
After your operation you will have a drip (intravenous infusion) going into a vein in your arm. Depending on the operation you have had, you may have one or more wounds, which may have small tubes (drains) coming out of them to drain any excess fluid that is produced. After your operation you may have some pain or discomfort which may continue for a few weeks, particularly when you are walking around. Regular painkillers should help to ease this, so let the staff on the ward know if you are still in pain.
You will probably be ready to go home from 7 to 10 days after your operation. Arrangements can be made for a district nurse to visit you at home, and if you have any problems you should contact your doctor as soon as possible.
Change in body appearance
You may be worried about adapting to changes in how your body looks, and how you may feel about your body after any surgery. This is a normal reaction, as over the years we all develop an image in our minds about what our bodies look like. Although we may not be completely satisfied with that image, most people are used to the way they see themselves. It can be upsetting to have that image changed permanently by surgery, especially if you have a stoma.
You may also be very concerned about the effect that the surgery may have on your personal relationships and lifestyle. You may be worried about rejection, continuing to have sex with your partner, or starting a new relationship. Many people find that once they have found the courage to talk about their fears with a partner, their minds are set at ease. Just talking about your feelings can help to clarify your fears and also gives other people the chance to understand how you are feeling. You can talk to your doctor or nurse about your fears and support organisations can also give support.
Radiotherapy for invasive bladder cancer
Radiotherapy treats cancer by using high-energy rays, which destroy the cancer cells while doing as little harm as possible to normal cells.
When it is given
Radiotherapy for bladder cancer is often given as an alternative to surgery, which might then only be needed if the cancer comes back later on. Giving radiotherapy means that the bladder does not need to be removed, but you will need to have cystoscopies (usually every three months or so) after the treatment to make sure that the cancer has not come back.
The treatment is normally given in the radiotherapy department as a series of short daily sessions. The treatments are usually given from Monday to Friday, with a rest at the weekend. The number of treatments will depend on the type and size of the cancer, but the whole course of treatment will usually last from 4–7 weeks. Each treatment takes from 10–15 minutes. Your doctor will discuss the treatment and possible side effects with you.
Radiotherapy does not make you radioactive and it is completely safe for you to be with other people, including children, throughout your treatment.
Planning radiotherapy
Planning is a very important part of radiotherapy and makes sure that it is as effective as possible. It may take a few visits.
On your first visit to the radiotherapy department, you will have a CT scan or will be asked to lie under a machine called a simulator, which takes x-rays of the area to be treated. The treatment is planned by a clinical oncologist (a cancer specialist). A radiographer is the person who gives you your treatment.
Marks are usually drawn on your skin to help the radiographer to position you accurately and to show where the rays are to be directed. These marks must stay visible throughout your treatment, and permanent marks (like tiny tattoos) may be used. These marks are very small, and will only be done with your permission. The marks can sometimes be removed afterwards by laser. You can ask the staff at the radiotherapy department if they can arrange this.
Treatment sessions
At the beginning of each session of radiotherapy, the radiographer will position you carefully on the couch, and make sure you are comfortable. During your treatment you will be left alone in the room but you will be able to talk to the radiographer who will be watching you from the next room. Radiotherapy is not painful but you do have to lie still for a few minutes while the treatment is being given.
Side effects
Radiotherapy to the bladder area may irritate the bowel and cause diarrhoea and soreness around the anus. It may also cause mild cystitis, which can make you want to pass urine more often or cause a burning feeling when you pass urine. Your doctor can prescribe medicines to reduce this. These effects usually disappear gradually a few weeks after the treatment has ended.
Effects on the skin
Perfumed soaps, creams or deodorants may irritate the skin and should not be used during the treatment. At the beginning of your treatment you will be given advice on how to look after the skin in the area being treated.
Effects on the vagina
For women, radiotherapy to the pelvis can make the vagina become narrower and this can make sex difficult or uncomfortable. This can be avoided by keeping the muscles in the vagina as supple as possible. Hormone creams applied to the vagina, can help and these can be prescribed by your doctor. Regular sex, or use of a vaginal dilator, is often the easiest and most effective treatment. Our sections on sexuality and pelvic radiotherapy in women have detailed information about this.
Effects on ability to have erections
For men, radiotherapy to the pelvis can make it more difficult to have an erection. There are various treatments which can help. Our sections on sexuality and pelvic radiotherapy in men have detailed information about this.
Tiredness
Radiotherapy can also cause general side effects such as tiredness. These side effects can be mild or more troublesome, depending on the strength of the radiotherapy dose and the length of your treatment. The radiotherapist will tell you what to expect.
It is important to try to get as much rest as you can, especially if you have to travel a long way for treatment each day.
Loss of pubic hair
During radiotherapy to the pelvis you may lose some of your pubic hair. When you have finished the course of treatment, the hair will often grow back. However, the re-growth may be thinner or finer than it was before.
After radiotherapy
After your radiotherapy treatment you will have regular cystoscopies to check the inner lining of the bladder for any recurrence of the cancer.
Possible long-term side effects
In a small number of people, the bowel or bladder may be permanently affected by the radiotherapy. If this happens the increased bowel motions and diarrhoea may continue, or you may need to pass urine more often than before. The blood vessels in the bowel and bladder can become more fragile after radiotherapy treatment and this can make blood appear in the urine or in bowel movements. This can take many months or years to happen. If you notice any blood in your urine or stools it is important to let your doctor know so that tests can be done and appropriate treatment given.
We have further information about treatments for the long-term side effects of pelvic radiotherapy.
Infertility
Radiotherapy to the pelvic area is very likely to cause infertility in both men and women.
Chemotherapy for invasive bladder cancer
When it is given
Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. If the cancer has spread into the muscle of the bladder, or to other parts of the body, the chemotherapy drugs are given intravenously (into the vein).
This is done so that they can circulate in the bloodstream and reach the cancer cells anywhere in the body. Several drugs are given over a few days. The drugs are then repeated every few weeks for several months. The most commonly used intravenous drugs are cisplatin, carboplatin, methotrexate, vinblastine, gemcitabine (Gemzar®) and doxorubicin.
Intravenous chemotherapy may be given before surgery or radiotherapy to shrink the cancer and make these treatments more effective. It may also be used after surgery if there is a high risk of the cancer coming back or if tests show that the cancer has already spread to other parts of the body. Some research trials are using chemotherapy during radiotherapy treatment, to see whether this makes the treatments more effective.
Side effects
Chemotherapy drugs can cause side effects, but these can usually be well controlled with medicines.
Lowered resistance to infection Chemotherapy can reduce the production of white blood cells by the bone marrow, making you more prone to infection. Contact your doctor or the hospital straightaway if:
- Your temperature goes above 38ºC (100.5ºF).
- You suddenly feel ill (even with a normal temperature).
You will have a blood test before having more chemotherapy, to make sure that your cells have recovered. Occasionally it may be necessary to delay your treatment if your blood count is still low.
Bruising or bleeding Chemotherapy can reduce the production of platelets, which help the blood to clot. Let your doctor know if you have any unexplained bruising or bleeding, such as nosebleeds, blood spots or rashes on the skin, and bleeding gums.
Anaemia (low number of red blood cells) You may become anaemic. This may make you feel tired and breathless.
Nausea and vomiting Some chemotherapy drugs can make you feel sick or even be sick. Nausea and vomiting can be helped by taking anti sickness drugs (anti-emetics), which your doctor can prescribe.
Sore mouth Some chemotherapy drugs can make your mouth sore and may cause small ulcers. Regular mouthwashes are important and the nurses will show you how to do these properly.
Poor appetite If you don’t feel like eating during treatment, you could try replacing some meals with nutritious drinks or a soft diet. Our section on eating well has some useful tips on coping with eating problems.
Hair loss Some chemotherapy drugs may make your hair fall out. Hair loss can be very upsetting. However, if your hair does fall out, there are many ways of covering up, including wigs, hats or scarves. You may be entitled to a free wig from the National Health Service. Your doctor, or the nurse looking after you, will be able to arrange for a wig specialist to visit you. If your hair falls out, it should start to grow back within about 3–6 months of the end of treatment.
Chemotherapy affects people in different ways. Some people find they are able to lead a fairly normal life during their treatment, but many people become very tired and have to take things much more slowly. Just do as much as you feel like and try not to overdo it.
Although they may be hard to deal with at the time, these side effects will gradually disappear once your treatment is over.
Early menopause Chemotherapy may make some women have an early menopause. This can cause menopausal symptoms, which can include:
- hot flushes
- dry skin
- dryness of the vagina
- feeling low and anxious
- being less interested in sex for a time.
Many of these symptoms can be eased by hormone creams or tablets, prescribed by your specialist. These replace the hormones that would have been produced by the ovaries. If dryness of the vagina is a problem, your GP or specialist can prescribe creams or Vagifem pessaries, or you can buy lubricating gels such as KY Jelly or Replens from the chemist. You or your partner can apply the gels or creams directly to the penis or vagina before or during sex.
Contraception It is not advisable to become pregnant or father a child while taking any of the chemotherapy drugs used to treat bladder cancer, as they may harm the developing foetus. It is important to use effective contraception during your treatment and for up to a year afterwards. You can discuss this with your doctor or specialist nurse.
Condoms should be used during sex within the first 48 hours after chemotherapy, to protect your partner from any of the drug that may be present in semen or vaginal fluid.
Our general information on chemotherapy discusses the treatment and its side effects in detail. There are also sections on individual drugs and their side effects.
Treatment for advanced bladder cancer
If the cancer has spread outside the bladder, or comes back after the initial treatment, the main treatment is chemotherapy given into a vein. Chemotherapy given in this situation is known as palliative chemotherapy and the aim is to control the tumour and give a good quality of life.
Many people are frightened about having chemotherapy because of the possible side effects. The side effects are discussed in the previous section. Although chemotherapy can cause side effects, these can usually be well controlled with medicines. However, chemotherapy is still a treatment that people would prefer to avoid if they could, and when their doctor suggests chemotherapy, some people ask what would happen if they didn't have it.
Palliative chemotherapy aims to try and slow the growth of the cancer or shrink a tumour, to improve symptoms, keep up a good quality of life and to prolong life if possible. Unfortunately in this situation the chance of a cure is only possible in a small minority of people. Making decisions about treatment in these circumstances is always difficult.
Some people will have good control and shrinkage of the cancer, leading to fewer symptoms, a better quality of life and often a slightly longer life. For other people the chemotherapy may not have any effect on the cancer and the person will therefore have the side effects of the treatment without any benefit. If a person is fairly well, they are more likely to benefit from the chemotherapy and less likely to have side effects.
Despite the limitations of chemotherapy in this situation, some people find that it helps them to feel better and it may slightly increase their length of life. If you have been offered chemotherapy, it is helpful to discuss with your doctor the advantages and disadvantages in your particular situation.
If you decide not to have chemotherapy, there are other medicines and ways of controlling any symptoms of the cancer, and your doctors will discuss these with you.
Living with a urostomy
Some people with cancer of the bladder will need the complete cystectomy operation that leads to having a urostomy. This can feel very frightening at first. Learning to look after a urostomy takes time and patience, and help is available. Like anything new, it gets easier with practice.
Daily life
Most people who have a urostomy can get back to a normal life. Many go back to their jobs and take up their favourite pastimes again, including swimming.
Most hospitals have specially trained nurses called stoma care nurses, who will show you how to look after your urostomy and help you cope with any problems.
You may also find it helpful to talk with someone who has already learned to live with a urostomy. Your nurse or doctor may be able to arrange for a volunteer to visit you and talk to you about the more personal aspects. This advice, which comes from their own experience, can be very helpful, especially in the first few months after your operation.
The stoma
Before your operation, the doctor or nurse will carefully plan the position of your stoma, so that your bag will stay in place whether you are sitting, standing or moving about. The stoma is usually formed on the abdomen, to the right of the navel, but there are many considerations which must be taken into account when planning the position. Wrinkles, scars and prominent underlying bones must be avoided, as placing the stoma near them may make the stoma leak. Sometimes the stoma can be tailored to a person's particular need, for example a keen golfer may prefer a left-sided stoma so that it doesn't interfere with playing golf.
For the first few days after your operation, your nurse will look after your urostomy for you and make sure that the bag is emptied and changed as often as is necessary. At first your stoma will be slightly swollen and it may be several weeks before it settles down to its normal size. The stoma may also produce mucus (a thick white substance).
As soon as you feel ready, the nurse will show you how to clean your stoma and change the bags. It may be helpful for a close relative or friend to join you at this time in case you ever need help at home. There are several different types of bag (appliance) available and the nurse will help you to choose one that suits you best. When you are changing your bag, it helps to allow yourself plenty of time and privacy, so that you can do things at your own pace without interruptions.
Appearance
Most modern urostomy bags are designed to be flat and unnoticeable under clothing. However, the size and position of the stoma will be the most important factor in whether or not the bag or appliance is noticeable through your clothes.
The style of clothing you wear is obviously important. However, many young people with a urostomy find that they can wear their tightest clothes without anyone knowing that they are wearing a stoma bag. Although you may be very aware of your urostomy, few other people will ever notice unless you tell them.
Stoma supplies
Before you leave hospital, the nurse will make sure you have a good supply of urostomy bags. When you are at home you can get all your supplies from your chemist. As some chemists do not have a very large stock, it is often a good idea to give them your order well in advance. Sometimes it is better to get your supplies direct from a local stockist. The Urostomy Association can give you details of stockists close to you.
Support
Once you are at home you will still be able to phone your stoma care nurse for advice. Your GP may also be able to arrange for a district nurse to visit you for a few days when you first leave hospital. The nurse can help to sort out any problems you may have with your urostomy.
How surgery for invasive bladder cancer may affect your sex life
Apart from the psychological adjustments, the operation may have made physical changes which can cause problems with sex. It may not be possible to avoid damage to the nerves in the pelvis during the operation, although your doctor will do all they can to prevent nerve damage. If nerve damage occurs it may be difficult for a man to get an erection and women may find that the sensations they have during sex are different, as the vagina is usually smaller.
Men
If men have problems getting or maintaining an erection there are several options which may help. They can be prescribed by your GP or cancer specialist.
Medicines
Tablets of sildenafil (Viagra®) are available which help to give an erection by increasing the blood supply in the penis. The tablets have to be taken at least one hour before lovemaking. They cannot be taken by men who take nitrate-based medicines for heart problems. Vardenafil (Levitra®) is a similar tablet that can be taken 25–60 minutes before sex.
Tadalafil (Cialis®) tablets can be used. They can be taken up to 24 hours before lovemaking. Tadalafil works by increasing the blood supply to the penis. Tadalafil should not be taken by people who are taking certain heart medicines.
Tablets of apomorphine hydrochloride (Uprima®) can be dissolved under the tongue. These usually give an erection within 10–20 minutes. Some men find they cause headaches, feelings of sickness or dizziness.
Small pellets of alprostadil (MUSE®) can be put into the tip of the urethra. The pellet melts into the area around, and, after some rubbing to distribute it into the nearby tissues, produces an erection. Some men find that initially the pellet is uncomfortable.
Alprostadil (Caverject®) or Viridal® can be injected directly into the penis, using a small needle, to cause an erection. Some experimentation is often needed at first to get the dose right.
Pumps and other devices
Vacuum pumps can also be used to produce an erection. The pump is a simple device with a hollow tube that you put your penis into. The pump has a handle which sucks blood into the penis by creating a vacuum. The blood then gets caught in the penis by a rubber ring placed around the base. The ring allows you to make love without losing the erection. Once you have finished making love, the ring is taken off and the blood flows normally again.
The advantage of a vacuum pump is that it doesn't involve inserting anything into the penis, but it does need a bit of practice. It is particularly helpful for people who are not able to take other medicines. The pumps are available on the NHS.
Mechanical devices can be used to produce an erection. These are called penile prostheses and involve the insertion, under general anaesthetic, of flexible rods or thin inflatable cylinders into the penis. Your doctor can give you advice about both these treatments, which may be available from the NHS.
Women
In some women, the vagina may have been shortened or narrowed during the operation to remove the bladder, although the doctor will take care to leave as much of the vagina intact as possible.
This can make sex difficult or uncomfortable at first. One of the best ways of overcoming this problem is to start having sex regularly and gently, as soon as you feel ready. This will gradually stretch the vagina, making it more supple, and will make sex easier and more enjoyable. If you do not have a regular sexual partner, vaginal dilators can be used. Your nurse or doctor can show you these, and explain how to use them.
Some women find that they have different sensations during sex. It may be more difficult to have an orgasm. If the womb has been removed to treat any spread of the cancer, it can make a woman feel that she has lost a part of her female identity. Again, talking to your doctor or specialist nurse about any problems will help to bring fears and worries into the open. If you want, your doctor or nurse can refer you to a specialist in sexual problems, or a trained counsellor, for advice and support.
If you feel that counselling would help, you could contact one of the organisations that offer counselling.
Talking about sex
You may find it difficult or embarrassing to talk about any sexual problems you may have. However, most doctors are very understanding, and even if they cannot help, they can refer you to a doctor or therapist who specialises in sexual problems. These specialists can give emotional support and advice on how to cope with impotence and any related problems.
It can be helpful to remember that they deal with situations like this every day and are used to discussing personal problems. If you have a partner, it may be helpful for them to see the specialist with you so that any fears and worries can be brought out into the open.
Sex is safe
One common fear is that cancer cells can be passed on to your partner during sex. This is not true. Cancer is not infectious and it is perfectly safe for you to have sex as soon as you feel ready.
Follow-up after treatment for bladder cancer
After your treatment has finished, your doctor will want you to have regular check-ups. If you have had a partial cystectomy or radiotherapy you will have regular cystoscopies and x-rays. These will usually take place every 3–6 months at first, and will continue for several years.
If you have any problems or notice any new symptoms between appointments, let your doctor know as soon as possible.
For people whose treatment is over apart from regular check-ups, our section on adjusting to life after cancer gives useful advice on how to keep healthy and adjust to life after treatment.
Research - clinical trials for bladder cancer
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.
Clinical trials may be carried out to:
- test new treatments, such as new chemotherapy drugs, gene therapy or cancer vaccines
- look at new combinations of existing treatments, or change the way they are given, to make them more effective or to reduce side effects
- compare the effectiveness of drugs used for symptom control
- find out how cancer treatments work
- see which treatments are the most cost-effective.
Trials are the only reliable way to find out if a different operation, type of chemotherapy, radiotherapy, or other treatment is better than what is already available.
Taking part in a trial
You may be asked to take part in a treatment research trial. There can be many benefits in doing this. Trials help to improve knowledge about cancer and develop new treatments. You will also be carefully monitored during and after the study. Usually, several hospitals around the country take part in these trials. It is important to bear in mind that some treatments that look promising at first are often later found not to be as good as existing treatments, or to have side effects that outweigh the benefits.
Blood and tumour samples
Many blood samples and bone marrow or tumour biopsies may be taken to find out what is wrong with you. Most of these are needed to make the right diagnosis. You may be asked for your permission to use some of your samples for research into cancer. Some samples may be frozen and stored for future use, when new research techniques become available.
The research may be carried out at the hospital where you are treated, or it may be at another hospital. This type of research takes a long time, so you are unlikely to hear the results. The samples will, however, be used to increase knowledge about the causes of cancer and its treatment. This research will, hopefully, improve the outlook for future patients.
Radiotherapy and chemotherapy trials for bladder cancer
The BC2001 trial is for people who have invasive bladder cancer. People in this trial have a higher than normal dose of radiotherapy to the cancer itself, but a lower dose to the unaffected areas of the bladder. This trial is also looking at whether giving chemotherapy during the radiotherapy can improve the results.
The BCON trial has researched whether cancer cells can be killed more effectively by radiotherapy if they have plenty of oxygen. This trial tried two different ways of increasing the oxygen supply to the cancer cells. It is hoped that this will help to stop the cancer from coming back after treatment. It involves taking nicotinamide tablets and wearing a breathing mask for a few minutes before and during each radiotherapy treatment.
Chemotherapy trials
Some trials are comparing different types of chemotherapy combinations. Recent trials have used the following drugs: gemcitabine (Gemzar®), paclitaxel (Taxol), carboplatin, methotrexate, vinblastine and mitomycin.
Some trials are looking at the most effective time to give chemotherapy. For example, whether giving it immediately after surgery for invasive bladder cancer can reduce the chance of the cancer coming back.
