x
LIVING WITH BLADDER CANCER
After your treatment for early bladder cancer, there is still a chance that your cancer could grow back. So your specialist will want you to go for regular checkups.
The best way to check your bladder is by having a cystoscopy. You may have this under local or general anaesthetic.
You will probably have a cystoscopy to check your bladder 3 months after your treatment finishes. Then you are likely to have them at intervals for several years. Your own specialist will decide how often you should have cystoscopies, depending on how likely it is that the cancer could come back in your case.
If your cancer is low grade and at low risk of coming back you may only need to have a cystoscopy once a year for 5 years. After this, your doctor may just discharge you from their list.
If your cancer is moderate grade you may have cystoscopies every 3 months for one to 2 years, then every 6 months for 2 years and then yearly up to 10 years after treatment. The more time passes without the cancer coming back, the smaller the risk of the cancer ever coming back. But there is still a small risk, even after 10 years.
If you had a high grade cancer you may have cystoscopies every 3 months for a few years. And you may have to give a urine sample every 6 months or yearly. The lab will check the urine samples for cancer cells. You will need to have treatment into the bladder at regular intervals to prevent the cancer from coming back. In between these treatments you will have check cystoscopies.
If you had Ta or T1 bladder cancer and it comes back inside the bladder, you can have the growths removed again during a cystoscopy, as before. The specialist will take more biopsies to check that the cancer is still at an early stage. If it is, then you will usually have treatment into the bladder. You will then go back to having regular cystoscopies to check your bladder.
Your doctor may ask you to have more intensive treatment if your cancer is
Whichever doctor you see, you will have some tests from time to time. These may include
• Being examined by your doctor
• Cystoscopy if you still have your bladder
• X-rays
• CT scans
• Urine tests
• Blood tests
• GFR test (Glomerular filtration rate test) or renogram to check how well your kidneys are working
You won't have all these tests at every visit to your specialist but your doctor will almost certainly examine you. Your doctor will also ask
• How you are feeling
• Whether you have had any new symptoms
• Whether anything is worrying you.
If you still have your bladder, you will have cystoscopies regularly to make sure there is no sign of the cancer growing back. This could be every 3 to 6 months at first. Gradually the time between the cystoscopies will get longer if all is well.
Do make sure you tell your doctor about any continuing side effects of your treatment. Your check ups are not just to make sure your cancer is under control. They are to make sure your treatment has been as successful as possible in allowing you to live as normal and healthy a life as you can. Some side effects may be permanent, such as the bladder being able to hold less urine after radiotherapy. But it may be possible to improve the situation for you, even if the side effect cannot be got rid of altogether.
If you find that worry is seriously affecting your life, you may need more help. It is quite common these days for people to have counselling after cancer treatment. This is a way of exploring more deeply what is worrying you and helping you come to terms with it.
How you manage after surgery will depend to some extent on which type of surgery you had and whether it was for early bladder cancer or invasive bladder cancer.
If you have had a cystoscopy to remove early bladder cancer, then you should not notice any physical problems at all. You may worry that the cancer may come back and you may need further treatment. Knowing that you are going to have cystoscopies every few months may also worry you. But if everything goes well, the checkups will gradually become less frequent.
It may take some time to get used to having a stoma. There are the practical things to learn. For example
But there is also the change in your body to come to terms with. This can take quite a time to get over. Most people do get over it, with help from family and friends.
Whether with a partner, or with friends, it is very likely that you will worry about how the stoma will affect your relationships. These can be practical worries about the bag being noticeable or leaking, or emotional worries about how your friends or partner may react.
Stoma appliances are very well designed. They are not easily seen through your clothes and should not leak. Your continent urinary diversion should not leak unless you let it get too full. If you are having this problem, it may help to empty it more often. You may also need to reduce the amount you drink after a certain time in the evening.
If you are able to talk openly to friends and family about your surgery, you will probably find that your fears will disappear. Most people are very willing to try and understand and help if they can.
After bladder surgery there can be some physical changes that may affect your personal life.
Your stoma shouldn't stop you enjoying your favourite pastimes. You can exercise and swim. If you have a urostomy, you can wear a smaller bag if you prefer. And if you have a continent urinary diversion, empty it before you start. You can wear a waterproof dressing for swimming if you want to.
The advantage of having a new bladder made is that your outside appearance will not change. You should be able to do all the things that you could do before the surgery. You will need to learn to pass urine by increasing your tummy (abdominal) pressure and this may take a few weeks or months.
If you are lifting something really heavy, you may find that your new bladder leaks. You will find out by trial and error whether any activities cause problems with leaking. If your bladder is leaking slightly when you are not doing anything really strenuous, try emptying it more often. Pelvic floor exercises can help to stop bladder leaking. And you can arrange an appointment to talk to your surgeon or specialist nurse. They can help you find ways to stop the leaking.
You should try to be as hygienic as possible. So wash your hands before and afterwards.
If you have a continent urinary diversion pouch, you will need to learn how to empty it and irrigate it.
You will begin doing this after the pouch made during your bladder surgery has healed. This is normally 2 to 3 weeks after your operation. Your stoma nurse will show you how to do this. This is just a check list to help you get used to it.
A catheter is a medical name for a tube. Catheterising means, putting a tube in to the pouch to empty out the urine. To start with you will need to do this every 2 hours or so. As your pouch stretches, you will be able to cut down to about every 4 to 6 hours during the day.
You will need
• A disposable catheter
• Some lubricating gel
• A container to drain urine into
Irrigating means washing out the inside of your pouch. You do this to flush out the mucus that collects inside. If you don't irrigate it regularly, the mucus could stop the stoma draining properly.
As well as the catheter and gel for emptying your pouch, you will need
First, empty the urine out of your pouch with the catheter as described above. But leave the catheter in after the urine has all drained out. Then
Your doctor may prefer you to use sterile saline solution or bottled water. Different surgeons may prefer one solution or another, but they are all okay to use. If you are away from home, you can use bottled water to irrigate.
