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).

Telehealth appointments

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 and have to
travel a long way for appointments. 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.

For more information, talk to your treatment team, download our fact sheet ‘Telehealth for Cancer Patients and Carers’ or call Cancer Council 
13 11 20.

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.

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. Search for “Survivorship Care Plan template”.

If you’ve been treated for early breast, bowel or prostate cancer, visit mycareplan.org.au to generate your own online survivorship care plan. Some other cancer types will be added in the future.

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. For information about what to expect at every stage of cancer care, including after treatment, visit Cancer Council’s guides to best cancer 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 with the specialist.

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 (such as hormone therapy for breast or prostate cancer), talk to your treatment team about how long the therapy will continue and side effects to look out for.

Some people may need blood tests and scans, for example, mammograms for women treated for breast cancer, or prostate specific antigen (PSA)
tests for men treated for prostate cancer. 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. For example, tell them if you feel low in mood or energy, aren’t sleeping, have a reaction to any medicines, or have pain or fatigue.

Managing your own health is an important part of survivorship. With the support of your health care team, there are many steps you can take to look after your own wellness, including monitoring your body for any signs that the cancer has returned, managing any side effects and making healthy lifestyle choices.

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 (e.g. blood pressure, cholesterol levels and weight). 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. 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 to help you manage the condition. This means you may be eligible for a Medicare rebate for up to five visits each calendar year to allied health professionals.

The Australian Cancer Survivorship Centre provides resources on survivorship care plans, dealing with common survivorship issues such as fatigue, and caring for a cancer survivor.

Other health professionals who can help

general practitioner (GP) – helps manage treatment side effects and may manage some surveillance tests; conducts regular health checks; provides advice about healthy lifestyle choices; manages any other physical or mental health issues you may have

cancer nurse specialist – provides care, information and support throughout treatment and recovery; helps with symptom management and wellbeing after treatment; liaises with other members of the treatment team

continence nurse – assesses and educates people about bladder and bowel control

counsellor, psychologist – help you manage your emotional response to treatment and recovery; can provide strategies to help you make any desired changes to your life

dietitian – helps with nutritional concerns, any ongoing problems with food and eating, or supervised weight loss or gain

exercise physiologist – prescribes exercise to help improve your overall health, fitness, strength and energy levels

lymphoedema practitioner – educates people about lymphoedema prevention and management; provides lymphoedema treatment

occupational therapist – assists in adapting your living and working environment to help you resume usual activities after treatment

physiotherapist – can develop a program to improve muscle strength, restore movement and help you get back to activities

sex therapist – helps you and your partner with sexuality issues after treatment

social worker – links you to support services and helps you with social, practical and financial issues

speech pathologist – helps with communication and swallowing issues; can give you strategies to help you eat and drink safely

Ask questions – It may help to write down any questions you have and take this list with you to your appointments. 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 if you have:

• difficulty doing everyday activities
• any new symptoms or new aches or pains that seem unrelated to an injury, or existing aches or pains that have become worse
• changes in weight or appetite
• feelings of anxiety or depression
• other health problems, such as heart disease, diabetes or arthritis
• started taking any new medicines or using complementary or alternative treatments.

Discuss other issues – You may want to talk to your health care team 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.

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 before check-ups may help.

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.