Life after treatment

Once your treatment has finished, you will have regular check-ups including physical examinations and you may have further imaging scans. Let your doctor know immediately of any health problems between visits.

Learn more about:

• Survivorship care plan
• Looking after yourself
• Practical and financial support
• If the cancer comes back

Survivorship care plan

Some cancer centres work with patients to develop a “survivorship care plan” which includes a summary of your treatment, sets out a schedule for follow-up care, lists any symptoms to watch out for and possible long-term side effects, identifies any medical or psychosocial problems that may develop and suggests ways to adopt a healthy lifestyle. Eating well and being physically active are all important.

If you don’t have a care plan, ask your specialist for a written summary of your cancer and treatment and make sure a copy is given to your GP and other health care providers.

NeuroEndocrine Cancer Australia has a template for a Treatment and Wellness Care Plan for people with NETs which can be used to document your cancer and ongoing management.

For more on this, see Living well after cancer.

Looking after yourself

There is no right way to feel if you have been diagnosed with a cancer such as a NET. Feeling a range of emotions is normal and you may feel overwhelmed, anxious, fearful, angry, sad or lonely. Many people need emotional support before, during and after treatment, particularly if they have ongoing symptoms and side effects that are hard to manage.

Adjusting to living with visible scars, changes to your physical appearance, changes to your lifestyle and bodily function can be hard and take time. If this is affecting you or likely to affect you, it’s important to seek help. It can help to talk things through with a counsellor, psychologist, friend or family member. Talk to your medical team, visit NeuroEndocrine Cancer Australia for support groups or call Cancer Council 13 11 20 about what support services are available.

For more on this, see Emotions and cancer.

Practical and financial support

There are many services that can help you manage with practical or financial issues caused by NETS. Benefits, pensions and hardship programs can help pay for prescription medicines (for example the Australian Government’s Pharmaceutical Benefits Scheme [PBS]), transport costs or utility bills. Ask the hospital social worker which services are available in your local area and if you are eligible to receive them.

For additional income, you may be able to access your superannuation early in certain circumstances, or claim on insurance policies such as income protection, trauma, and total and permanent disability (TPD).

Managing your ability to work or study, particularly during cancer treatment, is important to consider and will depend on your personal situation.

For more on this, see Cancer and your finances and Cancer, work and you, or call Cancer Council 13 11 20.

Download our fact sheets on Superannuation and Insurance.

If the cancer comes back

For some people a low-grade NET can be successfully removed with surgery, and there is a good chance it won’t come back after treatment. However, regular check-ups will be needed over a long period. Unfortunately, NETs are difficult to treat and they can come back after treatment. This is known as a recurrence. If the cancer does come back, treatment will depend on where the cancer has returned to in your body and your symptoms.

For Merkel cell carcinoma, major breakthroughs recently in understanding the cancer and how to treat it make long-term survival possible.

In many cases of advanced NETs, treatment will focus on controlling the tumour, managing any symptoms such as pain and improving your quality of life without trying to cure the disease. This is called palliative treatment. Palliative care can be provided in the home, in a hospital, in a palliative care unit or hospice, or in a residential aged care facility. Services vary in each state and territory.

When cancer is no longer responding to active treatment, it can be difficult to think about how and where you want to be cared for towards the end of life. However, it’s essential to talk about what you want with your family and health professionals, so they know what is important to you. Your palliative care team can support you in having these conversations.

For more on this, see Palliative care, Living with advanced cancer and Facing end of life, or listen to our podcast for people affected by advanced cancer.