Life after bladder cancer treatment

Dealing with feelings of sadness

If you have continued feelings of sadness, have trouble getting up in the morning or have lost motivation to do things that previously gave you pleasure, you may be experiencing depression. This is quite common among people who have had cancer. 

Talk to your GP, because counselling or medication – even for a short time – may help. Some people can get a Medicare rebate for sessions with a psychologist. Cancer Council may also run a counselling program in your area.

For information about coping with depression and anxiety, call Beyond Blue on 1300 22 4636 or visit beyondblue.org.au. For 24-hour crisis support, call Lifeline 13 11 14 or visit lifeline.org.au.

Follow-up appointments

If there are no signs of cancer after treatment ends, you will have regular appointments to monitor your health, manage any ongoing side effects and check that the cancer hasn’t come back or spread.

How often you see your doctor will depend on the type of bladder cancer and treatments. During the check-ups, you can discuss how you’re feeling and mention any concerns. You may also have tests such as CT scans and x-rays. 

People who still have a bladder will have regular follow-up cystoscopies because this is the best way to find bladder cancer that has come back. The cystoscopy may be done in hospital in the outpatient department under local anaesthetic or in an operating theatre under general anaesthetic. Depending on the stage and grade of the bladder cancer you had, you will need a follow-up cystoscopy every 3–12 months. This may continue for several years or for the rest of your life, but will become less frequent over time. Between follow-up appointments, let your doctor know immediately of any symptoms or health problems.

What if bladder cancer returns?

Sometimes bladder cancer does come back after treatment (known as a recurrence). If the cancer recurs and you still have a bladder, the cancer can usually be removed while it is still in the early stages. This will require a cystoscopy under general anaesthetic. If this isn’t possible, your doctor may consider removal of the bladder (cystectomy).

Some people need other types of treatment, such as systemic chemotherapy, immunotherapy or radiation therapy. The treatment you have will depend on the stage, grade and risk category of the cancer, your previous treatment and your preferences.

Seeking support

A cancer diagnosis can affect every aspect of your life. You will probably experience a range of emotions – fear, sadness, anxiety, anger and frustration are all common reactions. Cancer also often creates practical and financial issues.

There are many sources of support and information to help you, your family and carers navigate all stages of the cancer experience, including:

• information about cancer and its treatment
• access to benefits and programs to ease the financial impact of cancer treatment
• home care services, such as Meals on Wheels, visiting nurses and home help
• aids and appliances
• support groups and programs
• counselling services.

The availability of services may vary depending on where you live, and some services will be free but others might have a cost.

To find good sources of support and information, you can talk to the social worker or nurse at your hospital or treatment centre, or get in touch with Cancer Council 13 11 20.

Support from Cancer Council

Cancer Council offers a range of services to support people affected by cancer, their families and friends. Services may vary by location.

Cancer Council 13 11 20

Our experienced health professionals will answer any questions you have about your situation and link you to local services. 

Legal and financial support

If you need advice on legal or financial issues, we may be able to refer you to qualified professionals. These services are free for people who can’t afford to pay. Financial assistance may also be available. To find out more, 
call Cancer Council 13 11 20.

Peer support services

You might find it helpful to share your thoughts and experiences with other people affected by cancer. Cancer Council can link you with individuals or support groups by phone, in person, or online. Call 13 11 20 or visit cancercouncil.com.au/OC.

Information resources

Cancer Council produces booklets and fact sheets on more than 40 types of cancer, as well as treatments, emotional and practical issues, and recovery. Call 13 11 20 or visit your local Cancer Council website.

Practical help

Cancer Council can help you find services or offer guidance to manage the practical impacts of cancer. This may include helping you access accommodation and transport services.

Useful websites

You can find many useful resources online, but not all websites are reliable. These websites are good sources of support and information.

Caring for someone with cancer

You may be reading this booklet because you are caring for someone with cancer. What this means for you will vary depending on the situation. Being a carer can bring a sense of satisfaction, but it can also be challenging and stressful.

It is important to look after your own physical and emotional wellbeing. Give yourself some time out and share your concerns with somebody neutral such as a counsellor or your doctor, or try calling Cancer Council 13 11 20. There is a wide range of support available to help you with the practical and emotional aspects of your caring role.

Support services – Support services such as Meals on Wheels, home help or visiting nurses can help you in your caring role. You can find local services, as well as information and resources, through the Carer Gateway. Call 1800 422 737 or visit carergateway.gov.au.

Support groups and programs – Many cancer support groups and cancer education programs are open to carers as well as to people with cancer. Support groups and programs offer the chance to share experiences and ways of coping.

Carers Australia – Carers Australia provides information and advocacy for carers. Visit carersaustralia.com.au.

Cancer Council – You can call Cancer Council 13 11 20 or visit your local Cancer Council website to find out more about carers’ services.

Question checklist

Asking your doctor questions will help you make an informed choice. You may want to include some of the questions below in your own list.

Diagnosis

• What type of bladder cancer do I have?
• Has the cancer spread? If so, where has it spread? How fast is it growing?
• Are the latest tests and treatments for this cancer available in this hospital
• Will a multidisciplinary team be involved in my care?
• Are there clinical guidelines for this type of cancer?

Treatment

• What treatment do you recommend? What is the aim of the treatment?
• If an operation is recommended, how many times have you performed it
• Are there other treatment choices for me? If not, why not?
• If I don’t have the treatment, what should I expect?
• I’m thinking of getting a second opinion. Can you recommend anyone?
• How long will treatment take? Will I have to stay in hospital?
• Are there any out-of-pocket expenses not covered by Medicare or my 
  private health cover? Can the cost be reduced if I can’t afford it?
• How will we know if the treatment is working?
• Are there any clinical trials or research studies I could join?

Side effects

• What are the risks and possible side effects of each treatment?
• Are there likely to be any long-term side effects?
• If I need the bladder removed, what are my options for storing urine?
• Will I have a lot of pain? What will be done about this?
• Can I work, drive and do my normal activities while having treatment?
• Will the treatment affect my sex life and fertility?
• Should I change my diet or physical activity during or after treatment?
• Are there any complementary therapies that might help me?

After treatment

• How often will I need check-ups after treatment?
• If the cancer returns, how will I know? What treatments could I have?