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Life after treatment

Follow-up care

After your treatment has finished, you will have regular checkups. These will allow your health care team to monitor your health and wellbeing. Follow-up care differs depending on the type of cancer and treatment, the side effects experienced, and any other health conditions you are managing.

To help prepare for the time after treatment, you may find it helpful to write down any questions you have and discuss them with your treatment team (see suggested questions).

Survivorship care plans

Many treatment centres now work with people as they approach the end of their treatment to develop survivorship care plans. These care plans usually:

  • provide a summary of your treatment set out a clear schedule for follow-up care, including contact
  • details for the health professionals involved in your treatment and any screening tests
  • list any symptoms to watch out for and possible long-term side effects
  • identify any medical or psychosocial problems that may develop after treatment and ways to manage them
  • suggest ways to adopt a healthier lifestyle after treatment.

A survivorship care plan can help improve communication between you, your family and all the health care professionals involved in your care (e.g. your GP, treatment centre, psychologist, exercise physiologist, dietitian and physiotherapist).

A survivorship care plan is not a fixed document, it should be reviewed regularly as your needs change. You can ask your health care professionals to update your plan during consultations.

If you have not received a plan, it may be helpful to develop your own survivorship care plan and review it with your doctor. For more information, visit petermac.org/cancersurvivorship or journeyforward.org.

Your treatment summary

If you don't have a survivorship care plan, ask your surgeon, oncologist or specialist nurse for a written summary of your cancer and treatment. A copy should be given to your GP and other health care providers. This summary should include the following information:

  • cancer type
  • date of diagnosis
  • test results and staging information
  • overview of treatment (e.g. surgery, radiation therapy, chemotherapy, targeted therapy).

Taking charge of your care

Self-management is an important part of survivorship. With the support of your health care team, there are many steps you can take to manage your own wellness, including monitoring your body for any signs that the cancer has returned, managing any side effects and adopting a healthier lifestyle.

Common questions about follow-up

What do post treatment check-ups involve?

During check-ups your doctor may:

  • assess your recovery
  • ask how you're feeling and coping with life after cancer
  • monitor and treat any ongoing side effects
  • talk to you about any late treatment side effects to watch out for
  • look for any signs that the cancer may be coming back
  • check any new symptoms
  • do a physical examination
  • 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 (such as a dietitian, psychologist or physiotherapist).

If you are on maintenance treatment (e.g. hormone therapy for breast or prostate cancer), talk to your treating team about how long the therapy will continue and any side effects to look out for.

Some people may need blood tests and scans, e.g. mammograms for women treated for breast cancer or prostate specific antigen (PSA) tests for men treated for prostate cancer. Not everyone will need or benefit from ongoing tests and scans.

It is important to be honest with your doctors so that they can help you manage any problems you may be having. For example, tell them if you feel low in mood or energy.

The Australian Cancer Survivorship Centre provides resources on survivorship care plans, dealing with long-term side effects such as fatigue, and caring for a cancer survivor. You can access these at petermac.org/cancersurvivorship.

How often do I need check-ups?

The frequency of your check-ups will depend on the type of cancer and treatment you had, and your general health. 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 booked appointment with the specialist.

Who do I see for follow-up care?

You may have follow-up appointments with your specialist, GP or a combination of both. Often, your GP will provide your primary follow-up care, and liaise with specialists if needed.

If you continue to see your specialist, you will still need to see your GP or specialist nurse to monitor your overall health, e.g. your blood pressure, cholesterol levels and weight. You may also need to see other allied health professionals such as a dietitian, psychologist, physiotherapist or exercise physiologist.

Preparing for check-ups

It may help to write down any questions you have and take this list with you to your appointments (see a list of suggested questions). If your doctor uses medical terms you don't understand, ask them to explain them in plain English. If you have several questions or concerns, ask for a longer appointment when booking.

Taking notes or making an audio recording during the consultation can help you remember what was discussed. Many people like to have a family member or friend go with them for emotional support or to take part in the discussion. You may wish to ask them to make notes or simply wait in the waiting room.

Tell your doctor or nurse if you have:

  • difficulty doing everyday activities
  • any new symptoms
  • new aches or pains that seem unrelated to an injury, or existing ones 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.

You can also talk to your health care team about other issues. For example, you may want to discuss changes to your sex life, how cancer has affected your relationships, or practical issues such as returning to work or financial difficulties.

You may want to ask about a referral to see an allied health professional, such as a psychologist, counsellor, speech pathologist, social worker, occupational therapist, lymphoedema practitioner, physiotherapist, exercise physiologist, dietitian or specialist nurse.

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 and treatment, as this may affect the treatment they give you.

Managing anxiety before check-ups

Many cancer survivors say they feel worried before routine checkups. Anxiety, poor appetite, sleeping problems, mood swings and increased aches or pains are common in the lead-up to an appointment.

You may feel anxious before routine check-ups because:

  • you might fear that you'll be told the cancer has come back
  • going back to hospital brings back bad memories
  • you feel vulnerable and fearful just when you were feeling more in control
  • friends or family make comments that upset you.

You may find check-ups get easier once you have had a few and things are going okay. In the meantime, finding ways to cope with your anxiety before check-ups may help. See below for some coping strategies to help ease your anxiety.

Coping with check-ups

  • Take a close friend or relative with you to your check-ups.
  • Share your fears with people close to you so they can provide support.
  • Plan to do something special after your follow-up appointment.
  • 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 the signs of 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.
  • Stay informed about any new treatments for the type of cancer you had. This may help you feel more optimistic.
  • Ask if it is possible to go to the doctor's consulting rooms if you are not comfortable going to the hospital or treatment centre.
  • Try to book tests close to your next doctor's appointment.
"It is a major psychological hurdle to be positive after treatment. It is a relief for it to be over, but during checkups, you always wonder if the treatment worked. Also, if you get sick, it doesn't always mean it is cancer or related to the treatment. It might just be the flu." – Ben

Key points

  • Follow-up care is usually different for each person and depends on the type of cancer and treatment you had, and any long-term side effects you are experiencing.
  • It's a good idea to work with your treatment team to develop a survivorship care plan. This will set out a clear schedule for your follow-up care.
  • Many cancer survivors say they feel anxious before their routine check-ups.
  • Having a clear follow-up plan and asking your doctor what to expect at your follow-up appointments may help you feel less anxious.
  • Check-ups may get easier the more you have. Talk to your doctor about things you can do to help manage your anxiety before check-ups.
  • Your doctor will discuss how you're feeling and perform a physical examination as part of the check-up. Some people will also have blood tests and scans, but not everybody needs these.
  • If you don't have a survivorship care plan, ask your surgeon, oncologist or specialist nurse for a copy of your treatment summary. This will provide medical guidance for your GP and other health care providers.
  • Follow-up care may be provided by your GP, the doctor who first treated your cancer, a specialist nurse or a combination of health professionals.
  • You may also want to see other health professionals such as a physiotherapist, psychologist, dietitian or specialist cancer nurse.

Expert content reviewers:

Dr Haryana Dhillon, Senior Research Fellow, Centre for Medical Psychology & Evidence-based Decision-making, School of Psychology, University of Sydney, NSW; Polly Baldwin, 13 11 20 Consultant, Cancer Council SA; Jessica Barbon, Dietitian, Southern Adelaide Health Network, SA; Dr Anna Burger, Liaison Psychiatrist and Senior Staff Specialist, Psycho-oncology Clinic, Canberra Region Cancer Centre, ACT; Elizabeth Dillon, Social Worker, Peter MacCallum Cancer Centre, VIC; Prof Paul Glare, Chair in Pain Medicine and Director, Pain Management Research Institute, University of Sydney, NSW; Nicole Kinnane, Nurse Coordinator, Gynaecology Services, Peter MacCallum Cancer Centre, VIC; Amanda Piper, Manager, Australian Cancer Survivorship Centre, Peter MacCallum Cancer Centre, VIC; Kyle Smith, Exercise Medicine Research Institute, Edith Cowan University, WA; Aaron Tan, Consumer; Dr Kate Webber, Medical Oncologist and Research Director, National Centre for Cancer Survivorship, NSW.

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