Understanding Bladder Cancer

... and what you should know about its diagnosis and treatment.

A patient's Guide

CONTENTS

INTRODUCTION

This booklet has been written to help you understand more about cancer of the bladder and answer some of your questions about it.

CANCER is a disease of the cells which make up all the organs and tissues of the body. These cells normally repair and reproduce themselves in an orderly way. If for some reason this process gets out of control, a GROWTH or TUMOUR will form.

BENIGN tumours do not spread. However, if MALIGNANT cells are left untreated they may spread to surrounding tissues. Sometimes cells break away from this PRIMARY cancer and travel around the body in the blood or the lymph systems. When these cells reach a new position in the body they may multiply there and form SECONDARY or METASTATIC tumours.

The BLADDER is a hollow, balloon like organ lying in your pelvis, which collects URINE from your KIDNEYS via tubes called URETERS and stores it until it is full enough to empty through the URETHRA.

Each year in this country about 9,000 people develop bladder cancer. It is more common in men than in women. The cause is not known with certainty, but smoking is believed to be an important cause, and also certain chemicals.

(See later section on Industrial Diseases)

SYMPTOMS OF BLADDER CANCER

The most common symptom is blood in the urine, known as HAEMATURIA. This may appear suddenly with no apparent cause, and there is unlikely to be any pain associated with it. The urine may vary from rusty brown to deep red, depending on the amount of blood. It may be present some days and not others, and may disappear for weeks or months. The amount of blood is not related to the extent of the cancer. Sometimes blood clots can form and cause pain or obstruction to the flow of urine.

It should be remembered that there are other, more likely reasons why you might have haematuria, such as an infection in your bladder, or kidney stones. It does NOT necessarily indicate bladder cancer. It is, however, important to have it checked by your GP as soon as possible so that a diagnosis can be made and appropriate treatment started.

DIAGNOSIS

Normally, the first person you will see will be your own family doctor. You will be asked for a urine sample to test for blood and infection. You will also probably be examined, including an internal examination of the back passage (RECTUM) in men, and birth canal (VAGINA) in women.

Depending on the results of the examinations your GP may then refer you to a bladder specialist (UROLOGIST) at the hospital, who will want you to have further tests to determine whether you do have cancer, and if so, its exact type and extent. The most effective treatment can then be discussed with you.

PRELIMINARY TESTS MAY INCLUDE:

BLOOD TESTS will give the doctor an indication of your general health and how well your kidneys are working.

A CHEST-XRAY will examine your heart and lungs to check that they are healthy.

INTRAVENOUS UROGRAM or PYELOGRAM (IVU or IVP) is an X-ray examination that looks at your kidneys, ureters and bladder. The doctor can recognise on the X-ray film any abnormalities in the outline of the urinary system.

The IVU is carried out in the X-ray department, takes about an hour, and you can normally go home immediately afterwards. The injection of dye may make you feel hot and flushed initially but this soon passes.

CYSTOSCOPY is a telescopic examination that allows the urologist to inspect the inside of your bladder. Using the flexible cystoscope the examination is not painful, and does not require a general anaesthefic, so you you may return home afterwards. Under some circumstances it may be recommended that you have a general anaesthetic, for example if issue samples (BIOPSIES) need to be taken.

Biopsies are examined under a microscope to establish whether there are any cancerous cells, and if so, what kind they are.

(There is an information leaflet on cystoscopy which explains the procedure in more detail.)

POSSIBLE FURTHER TESTS

CT or CAT SCAN is a type of X-ray during which a large number of cross-section pictures of your body are taken and together build up a three dimensional image of the issues and organs inside. You may be asked to take a drink containing special dye to help outline the organs that are being examined and improve the quality of the pictures.

You will probably be in the department about an hour and a half and can normally go home immediately afterwards.

(There is a CT Scan information leaflet available which explains the scans in more detail.)

RADIOACTIVE BONE SCANS may be performed to check if any cancer has spread from the bladder to the bones. A tiny amount of radioactive liquid is injected into a vein, and then you will have a scan two to three hours later. The test does NOT make you radioactive as the amount used is so minute, and the scan is painless. Any areas of bone that are abnormal pick up the dye,and these areas can be X-rayed to give more detail,

ULTRASOUND SCANS produce a picture of the inside of the abdomen by using sound waves. You will be asked to drink plenty of fluids so that your bladder is full and the picture is clear. The scan takes about 15 minutes and is completely painless.

DIFFERENT TYPES OF BLADDER CANCER

SUPERFICIAL BLADDER TUMOURS

Most bladder cancers are SUPERFICIAL, and look like tiny sea anemones growing on the inside lining of the bladder. They are sometimes known as PAPILLARY tumours; in the past they were sometimes called PAPILLOMAS or BLADDER WARTS. They can be single or multiple.

TREATMENT OF SUPERFICIAL TUMOURS

They can be completely removed very simply by cutting them off with a probe passed up the cystoscope and CAUTERISING the bladder wall to prevent bleeding. The tumours are then removed through the cystoscope for microscopic examination. Small tumours are destroyed completely by this treatment but unfortunately the bladder may develop other tumours with time. It is therefore very important to have regular cystoscopies every few months to check that the bladder remains healthy and tumour free. Your urologist will be able to discuss with you how often you will need to come to hospital for cystoscopies once he has looked at your bladder and seen the laboratory result from your biopsies.

INTRAVESICAL CHEMOTHERAPY

In addition to the cystoscopic removal of the tumour and regular cystoscopies you may be asked to attend hospital as an outpatient to have intravesical chemotherapy. Studies have shown that in some patients the likelihood of developing more tumours may be lessened by washing your bladder out regularly with one of several drugs. This treatment is usually given on a weekly basis for 6-8 weeks.

The drug is put into your bladder through a small tube (CATHETER) gently passed into the bladder. The catheter is then removed and you are asked to hold the drug in your bladder for at least I hour, emptying your bladder before leaving the hospital. (It is not a good idea to pass these drugs at home or in a public toilet.)

If one drug is not completely successful, other drugs may be effective and will be recommended as the specialist considers appropriate.

There are separate information sheets for each drug, and you will be given the appropriate one when your treatment is discussed with you.

If the bladder cancer has grown deeper into the bladder wall and extends into the muscle layer or its surrounding tissues it is described as INVASIVE. This happens in only a small percentage of patients by the time it is diagnosed. Very rarely the tumours may have given rise to metastases or secondary deposits elsewhere in the body, as explained in the introduction.

For most patients the longer term future will involve regular, but less frequent cystoscopies and occasional admissions to hospital for extra treatment.

The cancer is not likely to progress. Only a small proportion of patients ever develop an invasive tumour that requires treatments described in the rest of this booklet.

INVASIVE BLADDER CANCER

TREATMENT OF INVASIVE TUMOURS

Surgery, radiotherapy and chemotherapy can be used alone or in combination to treat invasive bladder cancer. The treatment is planned and discussed with each individual patient, taking into account your age, general health, type and size of tumour and where it has spread, if at all.

SURGERY

TRANSURETHRAL RESECTION OF TUMOUR - PARTIAL CYSTECTOMY

If the tumour is confined to the bladder wall, it may be possible to remove the tumour and just the section of the bladder involved. 'This may be done either as a telescopic procedure (cystoscopic RESECTION) or as a cutting operation through the abdomen (PARTIAL CYSTECTOMY). After the operation you will be able to pass urine normally.

CYSTECTOMY

If the tumour is more extensive total removal of the bladder (COMPLETE or RADICAL CYSTECTOMY) may be necessary. In women this involves the removal of the whole bladder, the urethra, the lower end of the ureters, the front wall of the vagina, the womb (HYSTERECTOMY), fallopian tubes and ovaries. In younger women the ovaries may be preserved. As a result the vagina will be shorter and narrower following the operation.

In men the whole of the bladder, the prostate gland, the lower ends of the ureters and sometimes the urethra is removed. It is sometimes impossible to avoid damage to the nerves in the pelvis with the result that men will be unable to achieve an erection, and sexual feeling and orgasm (climax) may be impossible for both male and female patents. In some men inability to obtain and erection can be helped by an injection or an operation.

It can be difficult or embarrassing to discuss sex with the doctors or nurses, but remember, they deal with situations like this every day and are used to discussing personal matters. If you have a partner it may be very helpful for them to see the specialist with you - if possible before the operation is performed.

The operation of cystectomy is obviously very extensive and removes most of tke the structures in the pelvis, but this is done to give the best chance of cure and make the risk of cancer recurrence as low as possible.

REPLACING THE BLADDER

If the bladder has been completely removed, a new reservoir for the urine will have to be created. The most common method is by the formation of an ILEAL CONDUIT or UROSTOMY. A small section of the bowel is used to join the ureters from the kidney to the skin of the abdominal wall. The remaining bowel is joined together again. The opening or STOMA or UROSTOMY drains the urine into a flat, changeable, a watertight bag which is attached to the side of your abdomen. This will fill up in the same way as your bladder did and will need to be emptied regularly by a small tap on the bottom of the bag.

Sometimes it is possible to replace the bladder inside the abdomen (BLADDER RECONSTRUCTION) by using bowel made into a balloon-shaped sac and stitching it to the top of the urethra. It may be possible to empty the bladder normally, but you may have to learn to use a small tube (catheter) to drain the urine several times a day.

If the urethra has to be removed a CONTINENT POUCH can be formed, again using a piece of bowel. This meatis thilt although you do not pass urine out through the urethra, you do not have to wear a bag. Instead you will be taught how to dram the urine by passing a small catheter into the new bladder everv three hours through the umbilicus or navel.

(There are booklets available that deal with cystectomies, urostomies, reconstruction and continent pouches in more detail.)

These operations are all major, complex procedures. If your urologist feels that the best course of treatment for your bladder cancer is one of these options, he will discuss it in detail with you, and where appropriate, your partner or family. There are specialist nurses called STOMA CARE SISTERS who will advise and help you before and after your operation, who will teach you to look after your urostomy, bladder or pouch, liaise with Your GP and nurses at home, visit you after you leave hospital if possible and see you in clinic regularly afterwards. They will be able to introduce you to someone who has already had your operation so that you can find out how other people cope, and give you information on support groups in your area.

RADIOTHERAPY

Radiotherapy treats the cancer with high energy x-rays, while at the same time doing as little harm as possible to your surrounding healthy cells. It may be given before, after or instead of surgery, depending on your parficular circumstances. The treatment is usually given daily, Monday to Friday, at a radiotherapy Centre, and you will normally have it as an out-patent. The exact amount of radiotherapy, and the length of your course of treatment, will be decided by a specialist Radiotherapist or Clinical Oncologist and depends upon the extent of your disease and your general health. Treatment usually takes four to six weeks if radiotherapy is used alone, but may be only one week if given before cystectomy. A shorter course may also be given for symptom relief, if appropriate.

Radiotherapy planning is meticulous in order to give the tumour cells the maximum dose with the minimum side effects. This planning begins witti a Diagnostic CT Scan (see section on Diagnosis) to establish the exact stage of the disease. A Planning CT Scan is used to define the precise area to be treated. You will then be asked to have a CYSTOGRAM, a type of x-ray in which a catheter is gently inserted into your bladder and a dye instilled to give a very accurate picture of the inside of your bladder. In conjuncfion with the SIMULATOR, which takes x-rays of the area to be treated, this completes your radiotherapy planning.

All the information acquired is put into a computer which works out the best way of giving your treatment. There may be a delay of 3-5 days between complefion of planning and starting treatment. Marks may be drawn on your skin as guides to exactly where the treatment beams will be directed, and you will be asked to ensure these stay intact throughout your course of treatment, after which they can be washed off. Most people having radiotherapy below the waist will be offered permanent marking.

At each treatment the RADIOGRAPHER, who gives you your radiotherapy, will posifion you carefully on the couch and line up the marks on your skin with the machine. Your treatment only takes a few minutes each day and you will not feel anything.

Radiotherapy can cause side effects such as tiredness, tender skin, diarrhoea and an irritated bladder, but measures can be taken to alleviate these. You should get as much rest as you can and the side effects should all resolve within a few weeks after your treatment has finished. If any linger on it is important to let your doctor know. he will continue to see you regularly in clinic after your radiotherapy. This treatment does NOT make you radioactive, so you are not a threat to other people during or after your treatment.

No treatment for invasive bladder cancer is 100% successful for everybody, so after radiotherapy you will continue to need regular cystoscopy examinations of your bladder. If the tumour comes back again (RELAPSE) it may be treated by transurethral resection of tumour but cystectomy may be necessary.

CHEMOTHERAPY

Chemotherapy uses anti-cancer or CYTOTOXIC drugs to kill cancer cells. For invasive bladder cancer it is injected into a vein in your arm and will travel to bladder cancer cells anywhere in the body, not just at the primary site.

Chemotherapy is normally given in addifion to some form of surgery or radiotherapy rather than on its own. Some of it is given via a drip (INTRAVENOUS INFUSION), and some by injection, so some of the time you will be able to receive your treatment as an out-patent, and on other occasions you will need to stay in hospital for a night or two.

Because the drugs travel throughout the body, their side effects are not restricted to the bladder. With the aid of modern anti- sickness drugs, vomiting is not nearly as common a side effect as it was although you may feel nauseated (sickly) and lose your appetite- Your sense of taste may also change.

Complete hair loss is unusual with most of the drugs we use for bladder cancer, but your hair may lose its condifion and become thinner. If you are likely to lose a large amount of hair, we will warn you and arrange for you to choose a wig before the hairloss occurs.

Other side effects such as mouth ulcers, tiredness, irritability, loss of libido (sex drive) and a greater susceptibility to infecfion are all possible. These all settle after you finish treatment.

If you are to receive chemotherapy for your bladder cancer, your schedule of treatment, care and subsequent follow up will all be discussed with you by your doctor and nurses.

Invasive bladder cancer is a serious disease. As discussed already, several treatments may be used (cystoscopic resecfions, cystectomy, radiotherapy, chemolherapy). The different treatments appear to provide the same chance of being cured but their side effects and their impact on your personal way of life are very different. For this reason it is important that you consider the options and discuss them with your specialist, nurses and family doctor.

Do not be afraid to ask any quesfions and make sure you understand what is happening. Whichever treatment you choose you will see the hospital staff very regularly during treatment and your general condifion will be monitored very closely so any doubts or difficulfies you have can be voiced as they arise. You will confinue to be seen at regular intervals after your treatment.

CLINICAL RESEARCH TRIALS

Every patient wants to receive the "best" treatment and expects the medical profession to know what that is. Obviously, for new treatments, nobody can know which is best until they have been tried. Even for some established treatments the benefits are not as clear as we used to think.

Research to improve the treatment of bladder cancer is continuing all the time. If early tests suggest that a new treatment mav be more effective than the standard treatment currently being offered, then clinical research trials will be carried out to compare the new treatment with the current one. The most important scientific way to d this is by a RANDOMISED CONTROLLED CLINICAL TRIAL, in which half the patients receive each treatment by random selection, so that neither doctors, nurses or patients can bias the results.

A new treatment is considered an improvement on existing treatment when it is shown in trials to be more effective, or equally effective but with fewer undesirable side effects.

The treatment of both superficial and invasive bladder cancer has improved considerably in recent years and the treatment you are now receiving has been developed using clinical trials in previous patents. As new treatments develop they too need to be tested and your doctor may ask you to participate ill a trial or study to help with this.

Before you receive treatment in a clinical trial you must give your INFORMED CONSENT. This means that you must understand what the trial is for, what it will involve for you and why you have been invited to contribute. If you do not wish to take part, or later wish to withdraw for any reason, you are entirely free to do so and your decision will not disturb the doctors' or nurses' attitude to you in any way. You will simply be offered the standard treatment currently considered to be the best.

If you do decide to take part, remember that you will be contributing to medical knowledge and helping to improve the care and treatment of future patients as much as yourself.

INDUSTRIAL DISEASES BENEFIT

As mentioned in the Introduction, it is possible that the development of bladder cancer in some patients may be liketd to their previous occupations. There is a list of chemical substances, the exposure to which is recognised as being important in bladder cancer, and it may be possible to obtain Industrial Injuries Disablement Benefit and/or compensation if you have worked with them.

If you now have bladder and have worked in coke works, gas works, laboratories or in the synthetic dye, rubber, cable, printing and chemical industries, please let your urologist or the nursing staff know.

Leaflets and application forms are available from the Social Work Department and will be given to you on request. Alternatively the Benefits Agency leaflet 'N1 "If you have an Industrial Disease: Industrial Injuries Disablement Benefit"' may be obtained from any D.S.S Office. In some jobs your Union Representative will be able to give helpful advice.

WHAT CAN YOU DO TO HELP YOURSELF

The most important action you can take is to report any blood in your urine to your GP as soon as possible, so that it can be investigated and appropriate treatment started. It should be remembered that temporary blood may be present after treatments.

If you have been diagnosed as having a bladder cancer, it is very important that you come for regular check ups, especially for follow up cystoscopies, so that we can monitor your health.

So far as we are aware, diet and drinking habits do not affect bladder cancer, although excessive consumption of coffee is a possible contributing factor.

CIGARETTE SMOKING is almost certainly one cause of bladder cancer. People who smoke 20 cigarettes a day for 10 years have double the risk of developing bladder cancer compared with non smokers. If you stop smoking the risk is reduced.

If you have superficial bladder cancer and smoke, stopping smoking will probably reduce the risk of developing more tumours in the future.

SOURCES OF INFORMATION AND HELP

BACUP   3 Bath Place
	Rivington Street
	London EC2A 3JR
	0800 18 11 99 (free line)

Provides advice and information about all aspects of cancer as well as emotional support for cancer patients and their families.

UROSTOMY ASSOCATION
        Central Office
	"Buckland"
        Beaumont Park
        Danbury
        Essex CM3 4DE
        UK
	0124 541 4294

Helps patients before and after surgery with counselling on all aspects of a urostomy. Has details of all local groups of the association.

CANCER RELIEF MACMILLAN FUND
	15-19 Britten Street
	London SW3 3TZ
	0171 351 7811

Provides home care nurses through the Macmillan Service and financial grants for people with cancer and their families

CANCERLINK
	17 Britannia Street
	London WC1X 9JN
	0171 833 2451

Information service and resource to cancer support and self help groups throughout Britain.

CANCER HELP CENTRE
	Grove House
	Cornwallis Grove
	Clifton
	Bristol BS8 4PG
     	UK

THe centre promotes a positive attitude and encourages patients to help themselves. Offers complementary health programme.

NEWCASTLE REGION CONTACTS

UROSTOMY ASSOCATION
        Mrs E.M Spraggon
	45 Mountfield Gardens
	Kenton
	Newcastle upon Tyne NE3 3DD
	0191 285 1667

Offers information, support and advice. Meetings are held twice a year at Freeman Hospital.

COPING WITH CANCER, NORTHUMBRIA
	Shieldfield Health Centre
	4 Clarence Walk
	Shieldfield
	Newcastle upon Tyne
	0191 230 4424

For cancer patients, ex-patients and relatives, offering a change to exchange experience and obtain further information. They have a telephone listing service and various local self help groups:

Cleveland Group		01325 483938
Darlington Group	01325 469893
Morpeth Group		01670 861959
Newcastle Group		0191 281 3040
S.W Durham Group	01325 313061
Sunderland Group	0191 514 3723

This guide has been written by

Freeman Hospital, High Heaton, Newcastle upon Tyne, NE7 7DN, UK. Telephone: +44 (0191) 284 3111

This information is provided by the Freeman Hospital, Newcastle
and has been made available for TeleSCAN by the Netherlands Cancer Institute.
Date last modified: 12-1-1996. Copyright Reserved.