Coping and support when you have bladder cancer

You might have lots of emotions to cope with after a bladder cancer diagnosis. And treatment for bladder cancer can cause changes in your body which can affect how you feel in yourself.

There is support available to help you cope during and after treatment.

Your feelings

You may have several different feelings when you are told you have cancer. You may feel shocked and upset. You might also feel:

• numb
• frightened and uncertain
• confused
• angry and resentful
• guilty

You may feel some or all of these feelings. Or you may feel totally different. Everyone reacts in their own way. Sometimes it's hard to take in the fact that you have cancer at all.

Feelings are a natural part of coming to terms with cancer. All sorts of feelings are likely to come and go.

Helping yourself

You may be more able to cope and make decisions if you have information about your type of cancer and its treatment. Information helps you to know what to expect.

Taking in information can be difficult, especially when you have just been diagnosed or given news about your outlook. Make a list of questions before you see your doctor. Take someone with you to remind you what you want to ask. They can also help you to remember the information that was given. Getting a lot of new information can feel overwhelming.

Ask your doctors and nurse specialists to explain things again if you need them to.

You might feel that you don’t want to know much information straight away. Tell your doctor or nurse. You will always be able to ask for more information when you feel ready.

Remember that you don’t have to sort everything out at once. It might take some time to deal with each issue. Ask for help if you need it.

You can also do practical things such as:

• making lists to help you
• having a calendar with all appointments
• having goals
• planning enjoyable things around weeks that might be emotionally difficult for you

Talking to other people

Talking to your friends and relatives about your cancer can help and support you. But some people are scared of the emotions this could bring up and won’t want to talk. They might worry that you won't be able to cope with your situation or be afraid they will say the wrong thing.

It can strain relationships if your family or friends don't want to talk. But talking can help increase trust and support between you and them.

Help your family and friends by letting them know if you would like to talk about what’s happening and how you feel.

You might find it easier to talk to someone other than your own friends and family. We have cancer information nurses you can call on freephone 0808 800 4040, from 9am to 5pm, Monday to Friday.

Or you may prefer to see a counsellor.

Cancer chat

You can chat with other people affected by cancer in our online forum. 

Specialist nurses

Specialist nurses can help if you’re finding it difficult to cope or if you have any problems. They can get you the help you need. They can also give you information.

Specialist nurses are usually your first point of call if you have any questions or concerns. Make sure you know who your specialist nurse is and have their telephone number.

Physical problems

Bladder cancer and its treatment might cause physical changes to your body. Some changes may result from treatment such as radiotherapy, surgery or treatment into your bladder. The physical changes you have depend on how far your bladder cancer has grown (the stage). And what treatment you have.

It may be difficult to cope with these changes and they can affect the way you feel about yourself. Your doctor or specialist nurse will help you manage any changes. 

Problems passing urine

You are likely to experience problems passing urine. This can be a symptom of the cancer itself, or a side effect from treatment.

Problems might include leaking urine, difficulty passing urine or passing urine very often. The way you cope with this will depend on the cause, and what treatment you had. But there are often things you can do to help you cope.

Your doctor or specialist nurse will also talk to you about any problems you are having. And they will advise you about what might help. We have some information about life after the different types of surgery.

Changes in your appearance

Surgery for bladder cancer might cause scarring. It can be difficult if you have surgery to remove your whole bladder (radical cystectomy). You might also need to have a stoma.

You can get support to help you deal with the changes after surgery, particularly if you have a stoma. These body changes can affect your self esteem and the way you relate to close family and friends.

Tiredness

You might also feel very tired and lethargic a lot of the time. This can happen for a while after treatment, or if your bladder cancer is advanced.

Relationships and sex

The physical changes you have can affect your relationships and sex life. There are things that you can do to help.

Coping practically

As well as coping with the fear and anxiety that a diagnosis of bladder cancer brings, you might also have to work out how to manage practically. 

Practical things you and your family might need to cope with include:

• money matters
• financial support, such as benefits, sick pay and grants
• work issues
• childcare

Try to remember that you don't have to sort everything out at once. It might take some time to deal with each issue.

Ask for help if you need it. Your doctor or specialist nurse should know who you can contact to get help. They can put you in touch with professionals who are specially trained in supporting people with cancer. These people are there to help you so use them if you feel you need to.

You can get support from a stoma nurse or dietician. Social workers can help you with information about your entitlement to sick pay and benefits. They can also help you to organise your recovery if you need help when you first come out of hospital.