After your treatment ends, it's important to have regular appointments with your cancer specialists, cancer nurse or GP to monitor your health, manage any long-term side effects and check that the cancer hasn’t come back or spread. Sometimes it may seem hard to attend appointments, but it's worth the effort.
To assist in your follow-up care, ask your cancer specialist or nurse for a written summary of your cancer and treatment. They should also send a copy to your GP and other health care providers. This summary should include:
- the cancer type and features
- date of diagnosis
- test results and staging information
- overview of cancer treatment (types and dates).
You may be able to have some appointments with your health professionals at home over a video link or on the phone. This is known as telehealth. It can reduce the number of times you need to travel to appointments. This may be particularly helpful if you live in a rural or regional area.
Although telehealth can’t replace all face-to-face appointments, you can use it to talk about a range of issues including test results, prescriptions and side effects.
Survivorship care plans
Some treatment centres now develop survivorship care plans for people as they approach the end of treatment. These plans usually:
- provide a cancer treatment summary
- set out a clear schedule for follow-up appointments and screening tests, including contact details for the health professionals involved in your treatment and ongoing care
- list any symptoms to watch out for and possible long-term side effects
- identify your medical, emotional, psychological or social needs after treatment and ways to manage them
- explain the roles and responsibilities of different members of your health care team and who to contact if you are worried
- suggest ways to adopt a healthy lifestyle after treatment.
A survivorship care plan can help improve communication between you, your family and all the health professionals involved in your care. The plan is not a fixed document but should be reviewed regularly as your needs change. You can ask your health professionals to update your plan during consultations.
Where to get a survivorship care plan
If you have not been given a survivorship care plan, ask your treatment team if they can prepare one. Another option is to develop your own plan and review it with your treatment team.
The Australian Cancer Survivorship Centre provides a template you can download and fill out, as well as further information about dealing with common survivorship issues such as fatigue, and caring for a cancer survivor. My Care Plan allows you to generate your own online survivorship care plan for certain types of cancer.
How often do I need check-ups?
This is different for everyone. Your follow-up schedule depends on the type of cancer and treatment, the side effects experienced, and any other health conditions you are managing. Some people have check-ups every 3–6 months for the first few years after treatment, then less often after that.
Talk to your doctors about what to expect and ask if Australian guidelines or optimal care pathways exist for your follow-up care. If you are worried or notice any new symptoms between appointments, contact your GP right away. Don’t wait until your next scheduled appointment.
What happens at follow-up appointments?
During check-ups your doctor or nurse may:
- assess your recovery
- ask how you’re feeling and coping with life after cancer
- do a physical examination
- monitor and treat any ongoing side effects and talk to you about any late side effects of treatment to watch out for
- look for any signs that the cancer may be coming back
- check any new symptoms
- ask if you have any concerns or questions
- discuss your general health and give healthy lifestyle advice
- outline how the cancer and its treatment might interact with any other health problems
- refer you to other health professionals and services, as necessary.
If you are on maintenance treatment, talk to your treatment team about how long the therapy will continue and side effects to look out for.
Some people may need ongoing blood tests and scans. If you live a long way from your treatment centre, ask if you can have the tests in your local area. Not everyone will need or benefit from ongoing tests and scans. For many cancer types, having blood tests for tumour markers and imaging scans has not been shown to help identify a return of cancer.
It is important to tell your doctors about any new or ongoing symptoms so that they can help you manage them.
Who do I see for follow-up care?
You may have follow-up appointments with your cancer specialist, cancer nurse, GP or a combination. If you continue to see your specialist, you will still need to see your GP for regular health checks. People treated for cancer may have a higher risk of other illnesses, such as heart disease and stroke, compared with the general population. Having a regular GP can help you manage your overall health and ensure you receive the support you need.
Your GP or specialist can refer you to a range of allied health professionals to help you manage some of the side effects of treatment and improve your quality of life, including a dietician, exercise physiologist, occupational therapist and speech pathologist, among others. Ask for a referral to a professional with experience working with cancer survivors. Some people also find complementary therapies helpful.
If you have ongoing side effects after cancer treatment, talk to your GP about developing a GP Management Plan and Team Care Arrangement. This means you may be eligible for a Medicare rebate for up to five visits each calendar year to allied health professionals.
How should I prepare for an appointment?
- Ask questions – it may help to write down any questions you have. If your doctor uses medical terms you don’t understand, ask them to explain them in plain English. If you have several questions, ask for a longer appointment when booking.
- Record the details – taking notes can help you remember what was discussed. If you would like to record the discussion, ask your doctor first. It is a good idea to have a family member or friend go with you to appointments for emotional support or to take part in the discussion. You may wish to ask them to make notes or simply listen.
- Report on health issues – tell your doctor or nurse about any difficulty you have doing everyday activities; new symptoms, aches or pains that seem unrelated to an injury; existing aches or pains that have become worse; changes in weight or appetite; feelings of anxiety or depression; other health problems; or if you've started taking any new medicines or using complementary or alternative treatments.
- Discuss other issues – you may want to talk about other issues, such as changes to your sex life, how cancer has affected your relationships, returning to work or financial difficulties.
- Treatment history – give each health professional you see a copy of your survivorship care plan or treatment summary. If you don’t have one of these, tell them about your cancer diagnosis, treatment and any ongoing side effects, as this may affect the treatment they give you.
This checklist includes the kinds of questions you may want to ask your doctors about living well after cancer treatment.
Fear of cancer coming back
- Am I at risk of getting a different type of cancer or another serious health problem due to the cancer or its treatment?
- How can I manage the fear of the cancer coming back?
- What can I do to reduce the chance of the cancer returning?
- How likely is it that my cancer will come back?
- If the cancer returns, how will I know?
- What are the signs I should look for?
- Could I join any clinical trials or research studies about managing the emotional impact of cancer?
- Will you give me a survivorship care plan?
- Can I have a copy of my cancer treatment summary?
- Who should I go to for my follow-up appointments?
- How long will I receive follow-up care?
- What tests do I need to have? What will the test results tell us?
- Can I attend follow-up appointments using telehealth or have tests close to home?
- Why do I need check-ups?
- What will happen during my check-ups?
- How often do I need check-ups?
- What symptoms/problems should I watch out for?
- Who should I contact if I develop new symptoms?
- What happens if there are signs the cancer has come back?
- Can I have the flu, COVID-19 or other vaccines?
Family and friends
- Where can my family get help and advice?
- Are my children at risk of getting my type of cancer?
Treatment side effects
- How long will it be before I feel better?
- Am I at risk of developing late effects? What might these be?
- What can I do to prevent late effects? Do I need any tests to monitor this?
- Am I likely to have long-term problems with pain?
- How can I control any pain?
- What can I do to stop feeling so tired all the time?
- Are there things I can do to help me sleep better?
- Where can I get help for dealing with how I am feeling? Can you refer me to a psychologist or counsellor?
- Would a Mental Health Treatment Plan be of help?
- What sexual changes are likely to be short term and what changes are likely to be long term? Who can I speak to about this?
- Did the cancer and treatment affect my fertility?
- Is there someone I can see about ongoing side effects?
- Can you tell me how a GP Management Plan or Team Care Arrangement can help me manage any ongoing side effects?
Looking after yourself
- Is there anything I can do to improve my health?
- Should I follow a special diet now that treatment has finished?
- Who can give me advice about eating a healthy diet?
- What exercises would you recommend? Can you refer me to a physiotherapist or exercise physiologist?
- Are there any complementary therapies that might help me?
- What advice do you have about returning to work?
- Who can I talk to about my finances, legal matters and other practical concerns?
- Are there any support services you can refer me to?
- How can I connect with other cancer survivors?
- Are there any apps, podcasts or online programs that might be helpful?
Managing anxiety before check-ups
Many cancer survivors say they feel worried before routine check-ups. Anxiety, poor appetite, sleeping problems, mood swings and increased aches or pains are also common. These things may happen because:
- you fear you’ll be told the cancer has come back
- going back to hospital brings back bad memories
- you feel vulnerable just when you were starting to feel more in control
- friends or family make comments that upset you.
Check-ups may feel easier once you’ve had a few and things are going okay. In the meantime, finding ways to cope with your anxiety may help.
Contact cancer support
Coping with check-ups
- Share your concerns with people close to you so they can provide support.
- Plan to do something special after the check-up.
- Allow extra travel time so you don’t feel rushed. This can help you to feel calm and focused.
- Try to see your check-ups as a positive way you can care for yourself.
- Learn mindfulness and meditation skills, or practise deep breathing to help manage stress and anxiety.
- Book the first appointment of the day or plan another activity beforehand so you are busy and don’t have time to dwell on the appointment.
- Ask if you can go to the doctor’s consulting rooms if you are not comfortable going to the hospital or treatment centre.
- Try to book tests about a week before your next doctor’s appointment so you don’t have to wait a long time for the results.
Expert content reviewers:
Prof Michael Jefford, Medical Oncologist and Director, Australian Cancer Survivorship Centre, Peter MacCallum Cancer Centre, VIC; Lucy Bailey, Nurse Counsellor, Cancer Council Queensland; Philip Bullas, Consumer; Dr Kate Gunn, Clinical Psychologist and Senior Research Fellow, Department of Rural Health, University of South Australia, SA; Rosemerry Hodgkin, 13 11 20 Consultant, Cancer Council WA; Prof David Joske, Clinical Haematologist, Sir Charles Gairdner Hospital and Clinical Professor of Medicine, The University of Western Australia, WA; Kim Kerin-Ayres, Clinical Nurse Consultant, Cancer Survivorship, Concord Hospital, NSW; Sally Littlewood, Physiotherapist, Seymour Health, VIC; Georgina Lohse, Social Worker, GV Health, VIC; Melanie Moore, Exercise Physiologist and Clinical Supervisor, University of Canberra Cancer Wellness Clinic, ACT; June Savva, Senior Clinician Dietitian, Nutrition and Dietetics, Monash Cancer Centre, Monash Health, VIC; Dr Elysia Thornton-Benko, Specialist General Practitioner and Research Fellow, University of New South Wales, NSW; Prof Janette Vardy, Medical Oncologist, Concord Cancer Centre and Professor of Cancer Medicine, The University of Sydney, NSW; Lyndell Wills, Consumer.
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The information on this webpage was adapted from Living well after cancer - A guide for people with cancer, their families and friends (2021 edition). This webpage was last updated in May 2022.