A practical guide to understanding cancer. Understanding. non-inva sive. bladder. CAncER

Transcription

1 A practical guide to understanding cancer Understanding non-inva sive bladder CAncER

2 Contents Contents About this booklet 4 What is cancer? 5 The bladder 7 Risk factors and causes 9 Types of bladder cancer 11 Symptoms 13 How it is diagnosed 14 Staging 20 Treatment overview 23 Surgery 28 Chemotherapy 33 BCG treatment 37 Newer treatments 41 Research clinical trials 43 Follow-up 46 If the cancer comes back 47 What you can do 48 Who can help? 53 If you are a relative or friend 54 Relationships 55 Talking to children 56 1

3 Understanding non-invasive bladder cancer Financial help and benefits 58 Work 60 How we can help you 61 Other useful organisations 66 Further resources 73 Your notes and questions 77 2

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5 Understanding non-invasive bladder cancer About this booklet This booklet is for people who have been diagnosed with, or are having tests for, non-invasive bladder cancer. We hope it answers some of your questions and helps you deal with some of the feelings you may have. Non-invasive bladder cancer is cancer that is only in the inner lining of the bladder, and hasn t spread into the muscle of the bladder. Doctors call this non-muscle invasive bladder cancer. It s also sometimes called superficial bladder cancer. When cancer has grown into the deeper muscle layer of the bladder, it s known as invasive bladder cancer. This type of bladder cancer is treated differently to non-invasive bladder cancer. You can read more information about this in our booklet Understanding invasive and advanced bladder cancer. In this booklet, we ve included comments from people who have had bladder cancer, which you may find helpful. These are from our Online Community macmillan.org.uk/community We can t advise you about the best treatment for you. This information can only come from your doctor, who knows your full medical history. If you d like to discuss this information, call the Macmillan Support Line free on , Monday Friday, 9am 8pm. If you re hard of hearing you can use textphone , or Text Relay. For non-english speakers, interpreters are available. Alternatively, visit macmillan.org.uk 4

6 What is cancer? Turn to pages for some useful addresses and websites, and page 77 to write down any notes or questions for your doctor or nurse. If you find this booklet helpful, you could pass it on to your family and friends. They may also want information to help them support you. What is cancer? The organs and tissues of the body are made up of tiny building blocks called cells. Most of the body s cells repair and reproduce themselves in the same way. Normally, cells divide in an orderly and controlled way. But if for some reason the process gets out of control, the cells carry on dividing, and develop into a lump called a tumour. Normal cells Cells forming a tumour 5

7 Understanding non-invasive bladder cancer Doctors can tell whether the tumour is cancerous or not by removing a piece of tissue (biopsy) and examining a sample of cells under a microscope. Cancer cells have the ability to spread from where they first started to grow (the primary site). They may start to grow directly into (invade) surrounding structures, or break away from the primary site and spread through the bloodstream or lymphatic system. The lymphatic system protects the body against infection and disease. When the cancer cells reach a new area they may go on dividing and form a new tumour. This is known as a secondary cancer or a metastasis. 6

8 The bladder The bladder The bladder is a hollow, muscular, balloon-like organ that collects and stores urine. It sits in the lower part of the pelvis (the lower tummy area in between the hip bones). Right kidney Right ureter Left kidney Left ureter Bladder Urethra The position of the bladder in the body 7

9 Understanding non-invasive bladder cancer The inside of the bladder is covered with a urine-proof lining called the urothelium. This lining stops urine being absorbed back into the body. Urine is produced by the kidneys and travels to the bladder through tubes called ureters. The bladder stores the urine, which is made up of water and waste products that the body doesn t need. When the bladder is full, it sends messages (nerve signals) to the brain so that you feel the need to empty your bladder. The bladder muscle contracts and squeezes the urine out of the body through the urethra. The urethra is a short tube that lies in front of the vagina in women. In men, it passes through the prostate gland to the tip of the penis. 8

10 Risk factors and causes Risk factors and causes Each year, over 10,000 people in the UK are diagnosed with bladder cancer. Of these, around 80% (8 out of 10) are diagnosed with non-invasive bladder cancer. There are certain things that can affect the chances of developing bladder cancer. These are called risk factors. But having a risk factor doesn t necessarily mean a person will get bladder cancer, and people without risk factors can also develop cancer. Smoking Smoking is the biggest risk factor for bladder cancer. About 1 in 3 cases of bladder cancer may be caused by it. The longer a person smokes and the more cigarettes they smoke, the greater the risk. Chemicals that can cause cancer are present in cigarette smoke. When smokers inhale, some of these chemicals get into the blood and end up in the urine after being filtered by the kidneys. The chemicals can damage the cells that line the bladder and, over many years, this may cause cancer. Smoking also irritates the bladder, so stopping will help reduce some treatment side effects, as well as having other benefits to your health (see page 49). Age Bladder cancer is more common in older people. It s rare for anyone under 40 to develop it. 9

11 Understanding non-invasive bladder cancer Gender Bladder cancer is more common in men than in women. Exposure to chemicals at work These include chemicals previously used in dye factories, rubber, leather, textiles, printing, gasworks, plastics, paints, and in other chemical industries. Many of these chemicals are now banned, but it can take up to 25 years after exposure for bladder cancers to develop. The Department of Work and Pensions (dwp.gov.uk) has information about the chemicals involved and claiming for Industrial Injuries Disablement Benefit. Infection Repeated urinary infections and untreated bladder stones have been linked with a less common type of bladder cancer called squamous cell cancer. People who are paralysed have more bladder infections and a higher risk of getting bladder cancer. Previous treatment for cancer Radiotherapy to the pelvis to treat another cancer, and treatment with a chemotherapy drug called cyclophosphamide, can increase the risk of bladder cancer. Family history The risk of developing bladder cancer is slightly increased if you have a close relative who has had bladder cancer. Cancer of the bladder isn t infectious and can t be passed on to other people. 10

12 Types of bladder cancer Types of bladder cancer The most common type of bladder cancer is transitional cell bladder cancer (TCC), also known as urothelial carcinoma. This type of cancer starts in the cells of the bladder lining (the urothelium). TCC may be non-invasive or invasive. This booklet is about non-muscle invasive bladder cancer, which we call non-invasive bladder cancer. In non-invasive bladder cancer, the cancer cells are only in the inner lining of the bladder and have not spread (invaded) into the muscle layer. Non-invasive bladder cancer may appear in different forms. Papillary tumours typically appear as a mushroom-like growth(s) on the bladder lining. Carcinoma in situ (CIS) appears as flat, red patches on the bladder lining. It can grow quickly and, without treatment, there is a high risk that CIS may develop into invasive bladder cancer. Sometimes papillary cancer is present with CIS. Rarer types of bladder cancer include squamous cell cancer and adenocarcinoma. These types are usually invasive. We can give you more information about these types of bladder cancer on

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14 Symptoms Symptoms Blood in the urine (haematuria) This is the most common symptom of bladder cancer. It can happen suddenly and may come and go. Your urine may look pink, red or occasionally brown, or you may see streaks or clots of blood in it. If you see blood in your urine, it s very important to get it checked by your GP straight away. Sometimes, blood in the urine can t be seen and is picked up in a simple urine test. This is called non-visible or microscopic haematuria. If you have urinary symptoms (see below), doctors usually check your urine for non-visible blood. Urinary symptoms Occasionally, people with non-invasive bladder cancer experience a burning feeling when they pass urine or feel the need to pass urine more often or urgently. These symptoms are usually caused by infection rather than cancer. But some people may need more tests so a diagnosis can be made. There are different causes for the above symptoms, such as infection or stones in the bladder or kidney. But if you have any of these symptoms, it s important to get them checked by your GP. The earlier bladder cancer is diagnosed, the more likely it is to be cured. 13

15 Understanding non-invasive bladder cancer How it is diagnosed Usually, you begin by seeing your GP who will ask for a sample of your urine. This is tested in the GP surgery to find out if there s any blood present (haematuria), and is sent to a laboratory to be checked for any infection. If there s no obvious explanation for having blood in the urine (such as an infection), your GP should arrange an urgent referral if: you can see blood in your urine whatever your age you have urinary symptoms and a urine test finds blood in your urine (although it can t be seen) at any age a urine test finds blood in your urine and you re over 40. You may be referred to hospital to see a doctor who specialises in diagnosing and treating urinary, bladder and kidney problems (a urologist). Some people are referred directly to a haematuria clinic where tests needed to find the cause can often be carried out on the same day. At the hospital The urologist or a urology nurse specialist will ask about your urinary symptoms and your general health. The doctor may examine you by feeling your abdomen (tummy) and bladder. They will then usually arrange some tests for you. At a haematuria clinic, you will have tests carried out on the day you attend. 14

16 How it is diagnosed Having tests to diagnose bladder cancer can take a while and some may need to be repeated. This can be frustrating, but it s important your doctor has all the information they need to make the diagnosis. You ll usually have some of the following tests. Blood tests Samples of your blood may be taken to check your general health, the number of blood cells in your blood (blood count) and how well your kidneys are working. Urine tests A urine sample will be taken to see if there are any cancer cells in it. Sometimes, a test to check for other markers in the urine (molecular testing) may be done. This is not a standard test and is still in the early stages of being used. Cystoscopy This is the main test used to diagnose bladder cancer. A doctor or specialist nurse uses a cystoscope (a thin tube with a camera and light on the end) to examine the inside of your bladder. A cystoscopy to check for bladder abnormalities is usually done under local anaesthetic using a flexible cystoscope. You may be asked to drink lots of fluids before the cystoscopy and to provide a sample of urine, which will be checked for infection. The doctor or nurse will squeeze a jelly containing anaesthetic into the opening of your urethra (see diagram on page 7) to make the procedure less uncomfortable. The anaesthetic starts to work after a few minutes. Some people may have a sedative to help them relax. 15

17 Understanding non-invasive bladder cancer The doctor gently passes the cystoscope through your urethra and into the bladder and examines the whole lining of the bladder and urethra. The whole test takes a few minutes and you can usually go home after it s finished. You may have some burning or mild pain when you pass urine for the first couple of days or notice blood in your urine. This should clear up after a day or two. You ll be asked to drink lots of fluids to help flush out your bladder. If these symptoms don t go away or you have a high temperature, it s important to see your doctor to make sure you don t have an infection. After the cystoscopy, the doctor will be able to tell you if they have seen a bladder tumour. They will then arrange for you to come into hospital to have a procedure under general anaesthetic. This will involve having another cystoscopy, but the doctor will pass instruments through the cystoscope to take a small piece of tissue taken (biopsy), or to remove the tumour. If you need to have a biopsy or a tumour removed from the bladder lining, you ll usually have a cystoscopy in hospital under a general anaesthetic. Photodynamic diagnosis During a standard cystoscopy, the doctor uses white light to see inside the bladder. A new technique called photodynamic diagnosis (PDD) involves having a light-sensitive drug put into the bladder before the cystoscopy. This is absorbed by cancer cells. During the cystoscopy, the doctor uses a blue light, which makes areas of cancer glow (fluoresce). This helps to pick up small bladder tumours and carcinoma in situ (CIS). 16

18 How it is diagnosed Research is going on to find out if using PDD is a better technique than a standard cystoscopy for diagnosing bladder cancer. Ultrasound scan This test can also show up anything unusual in your urinary system. It uses sound waves to build up a picture of the inside of the body. You ll be asked to drink plenty of fluids before the test so that your bladder is full and can be seen clearly. Once you re lying comfortably on your back, a special gel is spread over your tummy (abdomen). A small device like a microphone is passed over the area. It gives out sound waves and picks them up as they bounce back as echoes from the organs inside your body. The echoes are made into a picture by a computer. The scan is painless and takes about minutes. Once it s over, you can empty your bladder. CT (computerised tomography) urogram A CT scan takes a series of x-rays, which builds up a three-dimensional picture of the inside of the body. A CT urogram is a CT scan of the bladder, ureters and kidneys. The scan is painless and takes minutes. It uses a small amount of radiation, which is very unlikely to harm you and won t harm anyone you come into contact with. You ll be asked not to eat for at least four hours before the scan. You may be given a drink or an injection of a dye, which allows your bladder, ureters and kidneys to be seen more clearly. This may make you feel hot all over for a few minutes. 17

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20 How it is diagnosed It s important to let your doctor know if you re allergic to iodine or have asthma, because you could have a more serious reaction to the injection. You ll probably be able to go home as soon as the scan is over. Waiting for test results Waiting for test results can be a difficult time. It may take from a few days to a couple of weeks for the results of your tests to be ready. You may find it helpful to talk with your partner, family or a close friend. Your specialist nurse or one of the organisations listed on pages 66 69, can also provide support. You can also talk things over with one of our cancer support specialists on

21 Understanding non-invasive bladder cancer Staging The stage of a cancer describes its size and whether it has spread. Although test results provide a lot of information, the exact stage of the cancer won t be known until after surgery to remove it. Once your doctors know the stage of the bladder cancer, they can decide on the most appropriate treatment for you. The most commonly used staging system is the TNM system: T is the size of the tumour (cancer). N is whether it has spread to the nearby lymph nodes (sometimes called glands). M is whether the cancer has spread to other parts of the body (metastases). Non-invasive bladder cancer has not spread to the lymph nodes or to other parts of the body. Stages of non-invasive bladder cancer Non-invasive bladder cancer will be staged as CIS, Ta or T1: Carcinoma in situ (CIS) This is sometimes described as a flat tumour. Cancer cells are only in the very inner layer of the bladder lining (see diagram on the next page). 20

22 Staging Ta The cancer is a mushroom-like growth (papillary cancer) growing only in the inner layer of the bladder lining. T1 The cancer has started to grow into the layer of connective tissue beneath the bladder lining. Fat Ta Muscle T1 CIS Connective tissue Bladder lining The stages of non-invasive bladder cancer 21

23 Understanding non-invasive bladder cancer Invasive and locally-advanced bladder cancer In stage T2 or T3 tumours, the cancer has grown into the muscle layer of the bladder (invasive bladder cancer) and may have spread further. Stage T4 is when the cancer has spread outside the bladder in the abdomen and pelvis, or to other organs in the body. You can read more about these stages in our booklet Understanding invasive and advanced bladder cancer. Grading The grade of a cancer gives an idea of how quickly it might grow. Bladder cancer is graded according to how the cancer cells look when the biopsy sample is examined under a microscope. Knowing the grade of a cancer helps your urologist decide if you need treatment after surgery. Grade 1 or low-grade The cancer cells look very much like normal bladder cells, are usually slow-growing and less likely to spread. Grade 2 or intermediate-grade The cancer cells look more abnormal and grow slightly more quickly than grade 1 cancers. Grade 3 or high-grade The cancer cells look very abnormal and are more likely to grow more quickly. Carcinoma in situ (CIS) is always classed as high-grade. 22

24 Treatment overview Treatment overview Surgery (see pages 28 31) is the main treatment for non-invasive bladder cancer. There may be one or more tumours in the bladder, which can be removed using a cystoscope (see pages 15 16). Some people may only need surgery to cure the cancer. Non-invasive bladder cancer can come back in the bladder lining and, in some people, it may start to grow into the muscle (invasive bladder cancer). Because of this, you may be given treatment after surgery to reduce the risk of this happening. Your doctor will discuss this with you and explain what the most appropriate treatment is for your situation. Treatment after surgery Depending on the risk of the cancer coming back, you may have the inside of your bladder treated with chemotherapy (see pages 33 37) or with a vaccine called BCG (see pages 37 41). During and after your treatment, you ll have regular cystoscopies to check the lining of your bladder. Any new tumours can usually be successfully removed with further surgery. Treatment with chemotherapy or BCG can also be given if the cancer returns. Very occasionally, people with a very high risk of the cancer becoming invasive may be advised to have an operation to remove the bladder (cystectomy see page 31). This is usually only suggested after other treatments have already been tried. 23

25 Understanding non-invasive bladder cancer Planning your treatment In most hospitals, a team of specialists will meet to discuss and agree on the plan of treatment they feel is best for you. This multidisciplinary team (MDT) will normally include: urologists, who are surgeons experienced in bladder surgery specialist urology nurses, who give information and support oncologists, who are doctors that have experience in bladder cancer treatment using chemotherapy, immunotherapy and radiotherapy pathologists, who advise on the type of cancer and its extent radiologists who analyse x-rays and scans. Other staff are also available to help you if necessary, such as physiotherapists, counsellors and psychologists. Your doctor will talk to you about the best treatment for your particular situation. If you have any questions about your treatment, don t be afraid to ask the doctor or 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 help you remember what is discussed. The advantages and disadvantages of treatment For most people with non-invasive bladder cancer, surgery is done with the aim of curing the cancer or controlling it for many years. You may also be given treatment after surgery to reduce the risk of it coming back. 24

26 Treatment overview When you have been offered treatment that aims to cure the cancer, deciding whether to accept it may not be difficult. But some people may need to know more about the benefits of further treatments when weighed up against the side effects. Your specialist will talk this over with you so that you know the advantages and any possible disadvantages. Second opinion Your MDT uses national treatment guidelines to decide the most suitable treatment for you. Even so, you may want another medical opinion. If you feel it will be helpful, you can ask either your specialist or GP to refer you to another specialist for a second opinion. Getting a second opinion may delay the start of your treatment, so you and your doctor need to be confident that it will give you useful information. If you do go for a second opinion, it may be a good idea to take a relative or friend with you. Have a list of questions ready, so that you can make sure your concerns are covered during the discussion. Giving your consent Before you have any treatment, your doctor will explain its aims. They will ask you to sign a form saying that you give 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 be given full information about: the type and extent of the treatment its advantages and disadvantages 25

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28 Treatment overview any significant risks or side effects any other treatments that may be available. If you don t understand what you ve been told, let the staff know straight away, so they can explain again. Some cancer treatments are complex, so it s not unusual to need repeated explanations. It s a good idea to have a relative or friend with you when the treatment is explained, to help you remember the discussion. You may also find it useful to write a list of questions before your appointment. People sometimes feel that hospital staff are too busy to answer their questions, but it s important for you to know how the treatment is likely to affect you. The staff should be willing to make time for your questions. You can always ask for more time if you feel that you can t make a decision when your treatment 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 don t have it. It s essential to tell a doctor or the nurse in charge, so they can record your decision in your medical notes. You don t have to give a reason for not wanting treatment, but it can help to let the staff know your concerns so they can give you the best advice. It s surprising how one adjusts to the diagnosis and just feels relieved treatment is underway. Kay 27

29 Understanding non-invasive bladder cancer Surgery Surgery is the main treatment for non-invasive bladder cancer. There is usually one or more small tumours on the bladder lining that can be removed surgically using a cystoscope. Before your operation Before your surgery, the urologist and specialist nurse will explain the operation to you. They will tell you what to expect immediately after the surgery and in the few days after it. This is a good opportunity to ask any questions you have about the operation. It s important that you discuss the operation fully with your surgeon beforehand so that you understand what it involves. Remember, no operation or procedure will be done without your consent. You may be admitted to the ward the day before your operation, so that the doctors and nurses can do any further tests. You ll then have a medical examination, which will include a blood test to check your general health. This is to make sure that you re fit enough to have a general anaesthetic. Or, you may have a pre-operative assessment at an outpatient clinic a few days before the operation. Some people have the operation done under a spinal anaesthetic. The doctor injects an anaesthetic drug through a needle into the back to numb the nerves from the waist down. Although you re awake during the operation, you won t feel anything. 28

30 Surgery The operation During the operation, the surgeon inserts a cystoscope into your bladder (see pages 15 16) and removes the tumour(s) using instruments that are passed through the cystoscope. They may use a mild electrical current to stop any bleeding (cauterisation). The operation is called a transurethral resection of a bladder tumour (TURB). Transurethral means through the urethra (see diagram on page 7). After the operation You ll be encouraged to get up out of bed and walk around once you feel well enough. This is important to prevent complications such as chest infections, or blood clots forming in your legs. Most people are given chemotherapy into the bladder immediately after surgery (see pages 33 37). You will have a thin, flexible tube (a catheter) in your bladder to drain your urine into a bag, but you can walk around with this. There will be blood in your urine at first. You will be encouraged to drink plenty of fluids to help flush out your bladder, and to reduce the risk of developing a urine infection. Sometimes, large bags of fluid are connected to the catheter to flush out the bladder until the bleeding clears. This helps prevents blood clots from forming and blocking the urethra. 29

31 Understanding non-invasive bladder cancer When your urine looks clear, the catheter will be taken out. This may feel a little uncomfortable but isn t painful. If your urine is no longer bloodstained, you ll usually be allowed to go home. This may be 2 3 days after the operation. Possible risks of surgery Removing early bladder cancers is generally a safe procedure. However, as with any operation, there are some possible risks. Urine infection Some people may get a urine infection while they are still in hospital or after they go home. Signs of an infection include: feeling cold, shivery, hot or sweaty feeling generally unwell your urine getting smelly or cloudy. If you think you have an infection, you can take a urine sample to your doctor for testing. Bleeding that goes on for more than a few days Up to about 3 in 100 people may need a blood transfusion for this. If the bleeding continues, you may need another operation under general anaesthetic to stop it. Some people may have bleeding about days after the TURB. This usually stops on its own after a couple of days. Always tell your doctor if you have blood or clots of blood in your urine following your surgery. 30

32 Surgery Damage to the bladder There s a small risk of a hole (perforation) being made in the bladder during surgery. If this happens, it can usually be managed by having a catheter in the bladder for about 7 10 days, to allow the hole to heal. If it doesn t heal in that time, an operation can be done to seal the hole. If there s a risk that some cancer cells may have been left behind, your doctors may want to do another TURB a few weeks after the first operation. Surgery to remove the bladder (cystectomy) This is only very occasionally needed. It s usually only done after other treatments to control the cancer have been tried. The aim of a cystectomy is to remove the cancer before it spreads into the muscle layer, and possibly to other parts of the body (secondary or metastatic bladder cancer). When bladder cancer has spread to other parts of the body, it can no longer be cured. Being advised to have your bladder removed to treat a non-invasive cancer can be hard to accept. Your urologist will carefully weigh up the possible benefits of treatments that aim to keep the bladder, against the risks of the cancer spreading before suggesting a cystectomy. With support from family, friends, health professionals and support organisations, people usually manage to cope well with a cystectomy. There s more information about cystectomy in our booklet Understanding invasive or advanced bladder cancer. 31

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34 Chemotherapy Chemotherapy After your surgery, you may be given chemotherapy directly into your bladder to reduce the risk of the cancer coming back. This is known as intravesical chemotherapy. Chemotherapy works by destroying cancer cells. When it is given into the bladder, the drug comes into direct contact with any cancer cells in the bladder lining. Intravesical chemotherapy is different to chemotherapy given into a vein (intravenous), which is sometimes used to treat invasive bladder cancer. Because it s given into the bladder, you don t get side effects, such as feeling sick or hair loss, that people may get with chemotherapy given into a vein. With intravesical chemotherapy, hardly any of the drug is absorbed into the blood, which means it rarely affects the rest of the body. Having chemotherapy into the bladder Most people have a one-off treatment of intravesical chemotherapy after their operation to remove the cancer. If there s a low risk of the cancer coming back, you won t usually need any more treatments. If you have an intermediate (midway) risk of the cancer coming back, you ll usually have a course of chemotherapy. This can be once a week for about six weeks. 33

35 Understanding non-invasive bladder cancer Intermediate risk includes: Ta cancer that is either grade 1 or 2 and: a tumour larger than 3cm (1in) across OR several tumours in the bladder OR tumours that keep coming back (recurring). T1 cancer that is grade 2 and a single tumour less than 3cm (1in) across. How it is given When you have chemotherapy into your bladder after surgery, you ll be in hospital with a urinary catheter in place. The chemotherapy is usually given a few hours after surgery. If you ve had a lot of blood in your urine, it may be delayed until the following day. If you need more chemotherapy after this, you ll have it in the hospital outpatient department. You can go home as soon as it s finished. Your nurse or doctor will give you information about preparing for your treatment. You may be asked to limit the amount of fluids you drink before having chemotherapy. Drinking too much can make your bladder feel uncomfortably full, and drinking less helps to increase the concentration of the chemotherapy drug in your bladder. People who take water tablets (diuretics) should take them later in the day, after the treatment. Let your doctor know about any other medicines you re taking or if you re feeling unwell before your treatment. You won t be given chemotherapy if you re feeling unwell or have a urine infection. 34

36 Chemotherapy When you re lying down, the nurse will put a catheter into your bladder. They will then put the liquid chemotherapy drug directly into your bladder through the catheter. The drugs most commonly used are mitomycin-c, epirubicin and doxorubicin or sometimes a newer chemotherapy drug called gemcitabine. Once the drug is in your bladder, the nurse usually removes the catheter. You ll be asked not to pass urine for at least an hour. This can be uncomfortable but it gives the chemotherapy time to work. Sometimes the catheter is left in and clamped to keep the chemotherapy in your bladder for the hour. You can walk around during this time. When the treatment is finished you can go to the toilet. If you have a catheter, the chemotherapy drug will be drained into a urine bag before the catheter is removed. For six hours after treatment, you ll need to take certain precautions to protect yourself and others from coming into contact with the chemotherapy drug. You may be asked to: avoid splashing urine on the toilet seat if you re a man, you may find it easier to pass urine sitting down wash the skin in your genital area carefully with soap and water after you pass urine to wipe off any of the drug that may have splashed on your skin put the lid down after you ve finished and flush the toilet twice wash your hands carefully afterwards 35

37 Understanding non-invasive bladder cancer drink at least 2 3 litres of fluid a day for at least 48 hours after each treatment to help flush it out of your bladder. Your nurse will go over this with you. Side effects The following side effects are due to inflammation of the bladder lining (cystitis): needing to pass urine often pain or stinging when you pass urine blood in the urine. These should settle down within a day or two. Drinking lots of fluid will ease the irritation. Taking mild painkillers will also help. Occasionally, some people get a red rash on their hands and feet. Let your nurse or doctor know if this happens. If the side effects don t improve, or if you have a raised temperature and your urine is smelly or cloudy, get in touch with your doctor straight away. These symptoms may mean you have a urine infection. Protecting your partner Men should use a condom during sex for the first 48 hours after chemotherapy. If you re a woman having treatment, your partner should use a condom. This protects your partner from any of the drug that may be present in semen or vaginal fluid. 36

38 BCG treatment Contraception It isn t advisable to become pregnant or father a child while having chemotherapy drugs to treat bladder cancer, as they may harm the developing baby. It s important to use effective contraception during your treatment. You can discuss this with your doctor or specialist nurse. BCG treatment BCG is a vaccine used to prevent tuberculosis (TB), but it s also an effective treatment for some non-invasive bladder cancers. It s given directly into the bladder (intravesical). BCG is a type of immunotherapy drug and doctors aren t sure exactly how it works in bladder cancer. It may make the bladder react in a way that triggers the immune system (helps fight infection and disease) to get rid of cancer cells. When BCG is used BCG helps prevent the cancer from coming back in the bladder lining, and also reduces the risk of it becoming invasive. It s usually given when there is a high risk that the cancer will come back and grow into the bladder muscle (become invasive). This may be in people who have: Carcinoma in situ (CIS) This can t usually be removed completely with surgery because it s flat and often widespread in the bladder lining. 37

39 Understanding non-invasive bladder cancer Ta and T1 cancers that are grade 3 (high-grade). T1 cancers that are grade 2 and larger than 3cm (1in) across OR when there are several tumours in the bladder. The urologist or cancer specialist will explain why BCG is the most appropriate treatment for you. There needs to be a gap of at least two weeks after you ve had surgery before BCG treatment can be given. You ll usually have your treatment with BCG weekly for six weeks, followed by a six-week break, and then once a week for 1 3 weeks. If the BCG treatment is working well, it can then be given weekly for 1 3 weeks every six months. This is called maintenance therapy and it can be given for up to three years. Treatment times vary and your doctor will explain what is appropriate in your situation. I ll be having BCG for the next two years apparently, followed by ops for biopsies, but if it keeps it away then that s great. Deb How it s given Treatment with BCG is given to you in the hospital outpatient department. The treatment takes up to three hours and you can usually go home as soon as it s finished. 38

40 BCG treatment You re usually asked to limit the amount of liquid you drink before the treatment. This helps to increase the concentration of BCG in your bladder. Plus, drinking too much beforehand can make your bladder feel uncomfortably full. If you normally take water tablets (diuretics), take them later in the day. Your nurse or doctor will give you advice about preparing for your treatment. When you re lying down and comfortable, the nurse will put a fine tube (catheter) into your bladder. The BCG is then put directly into your bladder through the catheter. For the first 15 minutes you ll have to lie on your front, but after that you can get up and walk around. You need to try not to pass urine for two hours afterwards. This can be difficult but the aim is to give the BCG treatment time to work. Sometimes the catheter is left in and clamped to keep the drug in your bladder for the next two hours. When the treatment is over, you can go to the toilet. If you have a catheter, the BCG is drained into a urine bag before the catheter is removed. After your treatment, you ll need to take some precautions for the next six hours. This is because BCG is a live vaccine and other people shouldn t be exposed to it. The main thing to avoid is urine splashing on the toilet seat or getting urine on your hands. To avoid splashing, men might find it easier to sit down when they re using the toilet. After you ve passed urine, you should put undiluted bleach into the toilet bowl to destroy any vaccine. Leave it for 15 minutes and then flush the toilet with the lid down. Your nurse or doctor will give you more advice about this. 39

41 Understanding non-invasive bladder cancer Side effects Because BCG goes directly into the bladder, most side effects are linked with the bladder. The most common effects are: needing to pass urine often pain when you pass urine blood in the urine flu-like symptoms such as tiredness, general aching and a raised temperature. These effects should settle down within a day or two. If they don t get better after this time, contact your doctor. It s important to drink lots of fluid, which will help flush the drug out of your bladder and reduce some of the side effects. Taking painkillers will also help. Rare side effects can include a continuing high temperature (fever), pain in your joints and a cough. If you have any of these symptoms, or feel generally unwell, contact your doctor immediately. It could be a sign of a more serious infection due to the BCG that needs urgent treatment. If this happens, you ll be treated with antibiotic drugs used to treat TB. Protecting your partner Men should use a condom if they have sex during the first week after having BCG treatment. If you re a woman having the treatment, your partner should use a condom during this time. This protects your partner from any vaccine that may be present in semen or vaginal fluid. 40

42 Newer treatments Contraception It s not known how BCG may affect an unborn baby, so it s not advisable to become pregnant or father a child while having it. It s important to use effective contraception during treatment and for six weeks afterwards. You can discuss this with your doctor or specialist nurse. Newer treatments Some newer treatments are being tested for non-invasive bladder cancer. Because these are still experimental, they re usually only available within clinical trials (see pages 43 45). If your urologist thinks a clinical trial may be helpful for you, they can refer you to the hospital carrying it out. Microwave hyperthermia (heat) and intravesical chemotherapy In this treatment, a fine probe applies microwave heat to the bladder lining. At the same time, chemotherapy is given into the bladder. Trials are still trying to find out if using microwave heat makes chemotherapy that s given into the bladder work better (see page 45). Electromotive intravesical chemotherapy Some trials involve giving the chemotherapy drug mitomycin into the bladder with a technique called electromotive stimulation. An electrical current is passed through the bladder so that the cells absorb more of the chemotherapy drug. 41

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44 Newer treatments BCG with interferon Interferon is a drug that stimulates the body s immune system to attack the cancer cells. Some research shows that giving it with lower doses of BCG may stop the cancer coming back in people who haven t been helped by BCG alone. More research needs to be done, as it s not clear how effective this combined treatment is. Research clinical trials Cancer research trials are carried out to try to find new and better treatments for cancer. Trials that are carried out on patients are called clinical trials. These may be carried out to: test new treatments, such as new chemotherapy drugs, targeted therapies, immunotherapy drugs or cancer vaccines look at new combinations of existing treatments, or change the way they are given to make them more effective or reduce side effects compare the effectiveness of drugs used to control symptoms find out how cancer treatments work find out which treatments are the most cost-effective. Trials are the only reliable way to find out if a different type of surgery, chemotherapy, hormone therapy, radiotherapy, or other treatment is better than what is already available. 43

45 Understanding non-invasive bladder cancer 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 be carefully monitored during and after the study. Usually, several hospitals around the country take part in these trials. It s 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. If you decide not to take part in a trial, your decision will be respected and you don t have to give a reason. However, it can help to let the staff know your concerns so that they can give you the best advice. There will be no change in the way that you re treated by the hospital staff, and you ll be offered the standard treatment for your situation. Our booklet Understanding cancer research trials (clinical trials) describes clinical trials in more detail. We can send you a copy. Blood and tumour samples Blood and tumour samples may be taken to help make the right diagnosis. You may be asked for your permission to use some of your samples for research into cancer. If you take part in a trial you may also give other samples, which may be frozen and stored for future use when new research techniques become available. Your name will be removed from the samples so you can t be identified. 44

46 Research clinical trials The research may be carried out at the hospital where you are treated, or at another one. This type of research takes a long time, and results may not be available for many years. The samples will be used to increase knowledge about the causes of cancer and its treatment, which will hopefully improve the outlook for future patients. Current research Research is looking at newer ways of treating the inside of the bladder in non-invasive bladder cancer (see pages 41 43). The HYMN trial is comparing microwave hyperthermia and mitomycin chemotherapy with a second course of BCG (or other standard treatment), for people whose bladder cancer has come back. Our website macmillan.org.uk/clinicaltrials also has links to clinical trial databases. 45

47 Understanding non-invasive bladder cancer Follow-up After your treatment finishes, you ll have regular check-ups. These will usually take place every 3 6 months at first, and you ll continue to have them for several years. If you have any new symptoms, or symptoms that come back in between appointments (especially blood in your urine) let your doctor know straight away. The most important test for follow-up is cystoscopy. Some people may also have their urine checked for cancer cells. Cystoscopy follow-up You will have regular cystoscopies (see pages 15 16) to monitor how well treatment has worked, and to check that no new cancers are growing in the bladder. The cystoscopy will be done in the outpatient department under local anaesthetic. If you have non-invasive bladder cancer that has a low risk of coming back, you ll probably have two cystoscopies 3 6 months after treatment. After this, you ll usually have one once a year until your urologist decides to discharge you. If the risk of the cancer coming back is high, you ll have more frequent cystoscopies and longer follow-up (possibly for life). Your specialist will explain more about this. 46

48 If the cancer comes back If the cancer comes back It s not uncommon for bladder cancer to come back in the lining of the bladder. If this happens, it can usually be removed with an operation. Some people may be given chemotherapy into the bladder. If you ve had intravesical chemotherapy before, you may be given BCG treatment. Non-invasive bladder cancer that comes back in the bladder can still be cured or controlled for a long time. In some people, the cancer may start to grow into the muscle layer of the bladder (invasive bladder cancer). If this happens, the urologist will usually recommend an operation to remove the bladder (cystectomy see page 31). A cystectomy may also be advised when treatment with BCG isn t working or if the cancer keeps coming back. Some people may have radiotherapy (high-energy rays to destroy cancer cells) to the bladder instead of a cystectomy. The aim of surgery and radiotherapy is to cure the cancer before it spreads into or through the muscle layer. If bladder cancer spreads outside the bladder to other organs in the body (secondary or metastatic cancer), it can no longer be cured. You can read more about these treatments in our booklet Understanding invasive and advanced bladder cancer. Your urologist, cancer specialist or specialist nurse will discuss this with you and explain what the treatments involve. 47

49 Understanding non-invasive bladder cancer What you can do Most people with non-invasive bladder cancer will be cured or will have their cancer controlled for many years. You may find that the cancer doesn t affect your life very much after the treatment is over. Keeping up with friends and getting on with day-to-day things can reassure you that life hasn t changed too much. An experience of cancer may help some people decide on new priorities in their lives. This may even mean spending more time with family, going on a special holiday, or taking up a new hobby. Just thinking about these things and making plans can help you realise you still have choices. There are also other things you can do to help improve your well-being and recovery. Looking after yourself and making positive choices After cancer treatment, you need time to recover. Looking after yourself is an important part of this. Some people may choose to make some lifestyle changes. It s not to say that you didn t do this before cancer, but you may want to focus more on making the most of your health. We ve included some information on the next couple of pages that may help you. 48

50 What you can do Stop smoking If you re a smoker, giving up is one of the healthiest decisions you can make. Smoking is a major risk factor for bladder cancer and other smoking-related cancers such as lung cancer. It also increases the risk of heart disease. Some studies suggest that stopping smoking may decrease the risk of non-invasive bladder cancer coming back in the bladder. There s lots of support available to help you stop. Our leaflet Giving up smoking has more information and tips to help you quit. Keep to a healthy weight If you feel you need to lose weight, when you re feeling up to it ask your GP for advice and what your ideal weight is. Keeping to a healthy weight reduces the risk of some other cancers, heart problems and illnesses such as diabetes. Here are some tips to help you lose weight: only eat as much food as you need eat a balanced diet with lots of fruit and vegetables eat less fat and sugar be more physically active. Our booklet Weight management after cancer treatment has some helpful tips. 49

51 Understanding non-invasive bladder cancer Eat healthily Eating healthily will give you more energy and help you recover. Try to eat plenty of fresh fruit and vegetables (five portions a day). If you eat meat, cut down on red meat and eat more chicken and fish. There s more information in our booklet Healthy eating and cancer. Get physically active Being physically active helps you feel less stressed and will give you more energy. It also keeps your weight healthy and reduces the risk of other health conditions. We have a booklet called Physical activity and cancer treatment, which has more information. Stick to sensible drinking guidelines These recommend men should drink no more than three units of alcohol a day (or 21 a week) and women no more than two units a day (or 14 a week). It s also a good idea to have a couple of alcohol-free days each week. Getting more information about your treatment Understanding the cancer and its treatment helps many people to cope. It helps you discuss plans for treatment, tests and check-ups with your doctors and nurses, and means you can play a real part in the decisions that are made. Being involved in these choices builds confidence and can help you get back control of your life. 50

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53 Understanding non-invasive bladder cancer Just Can t Wait toilet 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 Just Can t Wait toilet card is available that you can show to staff in places like shops or pubs. The card allows you to use their toilets, without them asking awkward questions. You can get the cards from the Bladder and Bowel Foundation see page 66 for details. Complementary therapies Finding a complementary therapy that helps you to relax can also be a very positive way dealing with anxiety and stress. We have a booklet called Cancer and complementary therapies, which we can send you. 52