Information for the public

Information and support after your diagnosis

Information and support after your diagnosis

Your care team

You should be given the name and contact details of a clinical nurse specialist who can help and support you throughout your treatment and care. The clinical nurse specialist should have experience and training in caring for people with bladder cancer. They will be in contact with the other professionals involved in your care. You should be able to go to your clinical nurse specialist with any questions you have about your treatment and care, and for help with concerns or problems.

Throughout your treatment and care, you should be offered chances to talk with members of your care team about the kinds of information and support that are right for you and, if you wish, your partner, family or carer. Your care team should offer to talk with you when you're first diagnosed with bladder cancer, after you've had your first treatment, if there is a change in your bladder cancer or it comes back after treatment, if you change your treatment or if you have cancer that can't be cured.

During these talks your care team should discuss with you:

  • the type of cancer you have and its stage and grade (for more information see types of bladder cancer)

  • the treatments you could have

  • any side effects you might get from your treatments

  • if you smoke, stopping smoking and the support you can get to help you stop (see other NICE guidance for details of our guidance on smoking cessation)

  • how the cancer or the possible treatments might affect your sexual health and the way you feel about your body, and where to find information about these that is specifically designed for either men or women

  • your diet and lifestyle, including physical activity

  • where to find more information about bladder cancer and bladder cancer support groups

  • going back to work after your treatment

  • getting financial support such as free prescriptions or compensation if you are not able to work.

Other people who can offer support

You and, if you wish, your partner, family or carer, should be offered opportunities to talk with other types of healthcare professionals throughout your treatment and care. For example, if you wish, you should be able to talk with professionals who can give emotional support and counselling to help with anxiety, stress or depression. You should also be offered opportunities to talk with other people who've had the same treatments you might have.

Questions to ask your care team

  • Who will I be able to talk to about my tests and treatment?

  • Is there any support I can have if I decide to make changes to my lifestyle, such as becoming more physically active, changing my diet or stopping smoking?

  • What other kinds of support will be available?

  • Will my GP be involved? If so, what will they do?

For family members, partners or carers

  • What can I/we do to help and support the person with bladder cancer?

  • Is there any additional support that I/we as carer(s) might benefit from or be entitled to?

  • Can we talk to the clinical nurse specialist?

  • Information Standard