Follow-up care

Friday 30 March, 2012

On this page: Your treatment summary | Common questions | Questions to ask your doctor | Managing anxiety before check-ups | Information reviewers  

After your treatment has finished, you may need regular check-ups. These will allow your doctor to monitor your health and wellbeing. Follow-up care depends on the type of cancer and treatment you had, plus any side effects you are experiencing. It's usually different for each person.

Your treatment summary

It's a good idea to ask your oncologist for a written summary of your cancer type, treatment and follow-up care. Share this summary with your GP or any new health care providers you see. It will provide medical guidance for your care when you've finished active treatment.

This plan should include:

  • type of cancer
  • date of diagnosis
  • diagnostic tests performed and results
  • pathology results: stage, grade, hormonal status (usually for people with breast cancer), tumour marker information
  • treatment details (e.g. type of surgeries, sites and amounts of radiation therapy, names and doses of chemotherapy and all other drugs, results of scans and x-rays)
  • list of symptoms to watch for and possible long-term side effects of treatment
  • contact information for health professionals involved in your treatment and follow-up care.

Common Questions

What do checkups involve?

During check-ups your doctor will:

  • see how you're recovering
  • ask how you're feeling and coping with life after cancer
  • monitor and treat any ongoing side effects
  • look for any signs that the cancer may be coming back
  • investigate any new symptoms
  • ask if you have any concerns
  • discuss your general health and suggest things you can do to keep yourself healthy, such as eating a healthy diet and exercising.

Blood tests and scans may be taken, depending on the cancer type and treatment. For example, women treated for breast cancer need mammograms and men treated for prostate cancer need PSA tests.

Being honest with your doctors will help them manage any symptoms that are bothering you. For instance, you should let them know if you feel very low in mood or energy.

How often do I need check-ups?

The frequency of check-ups varies depending on the type of cancer you have. You may want to ask your doctor about the national guidelines for follow-up care available for some cancers (e.g. breast and bowel cancer).

Some people have check-ups every 3-6 months for the first few years after treatment, then less frequently thereafter. Talk to your doctors about what to expect or call Cancer Council Helpline 13 11 20.

If you're worried or notice any new symptoms between appointments, contact your doctor. Don't wait until your next scheduled appointment.

Who do I see for follow-up care? 

You may have follow-up appointments with the same doctor who provided your cancer treatment. In addition, you may see your general practitioner (GP), who can help coordinate your care and monitor your overall health. This may include monitoring your blood pressure, cholesterol levels and weight.

Some people only need to see their GP for follow-up care. Depending on where you live, this may be the most practical approach. The GP will liaise with your specialists so that if problems occur, you can be referred again.

You may need help from other health professionals such as a physiotherapist, exercise physiologist, dietitian or specialist nurse.

How can I prepare for check-ups? 

Before you see the doctor, it may help to write down any questions you have — see the list of suggestions below. If your doctor uses medical terms you don't understand, it's okay to ask for a simpler explanation.

If you have several questions or concerns, ask for a longer appointment. Taking notes during the session can also help.

Many people like to have a family member or friend go with them, to take part in the discussion, take notes or simply listen.

Tell your doctor or nurse if you have:

  • trouble doing everyday activities
  • new symptoms
  • new aches or pains that seem unrelated to an injury, or familiar ones that have become worse
  • changes in weight
  • changes in appetite
  • feelings of anxiety or depression
  • other health problems, such as heart disease, diabetes or arthritis
  • medicines you are taking and other complementary treatments you're using.

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

You should tell other health professionals you see about your cancer diagnosis and its treatment, as this may affect their decisions about the treatment they provide you.

'My doctors know I've had pancreatic cancer. When I had some aches and pains in my abdomen, they wanted to make sure the cancer hadn't spread, so they ordered a colonscopy and gastroscopy.' — Leslye

Questions to ask your doctor

You may want to ask your doctor a few questions from this list:  

  • Why do I need check-ups?
  • What happens during check-ups?
  • How often do I need check-ups?
  • What symptoms should I look out for?
  • What tests will I have if there are signs the cancer may have come back?
  • How long will it be before I feel better?
  • What should I do if I have new symptoms between appointments?
  • Is there anything I can do to improve my health?
  • Where can I get further information about my follow-up care?

Managing anxiety before check-ups

Many cancer survivors say they feel anxious before routine check-ups. Sleeping problems, poor appetite, mood swings and feeling more aches and pains are common in the lead-up to the appointment.

You may feel anxious before check-ups because:

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

Finding ways to cope with your worries before check-ups may help. Once you have had a few and all is okay, you may feel less concerned.

Tips

  • Take a close friend or relative with you to your check-ups. Sharing your fears may help you cope better, and people close to you may want to help.
  • Make the day something to look forward to. Plan to do something special after your appointment – go out for a meal or buy yourself a treat.
  • Try to see your check-ups as a preventive measure. Regular check-ups may increase the chance of any problems being picked up early when they may be easier to treat.
  • If you find it overwhelming to go to a cancer treatment centre, ask if it's possible to visit the doctor elsewhere.
  • Do deep breathing or relaxation exercises to manage your anxiety when waiting for your appointment.
  • Book the first appointment of the day or plan another activity beforehand so you're 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 cope better.
'You do get nervous and you tell yourself it's only a check-up – but it becomes this mountain. I have my scans on the Monday and see the doctor on the Wednesday, because I can't handle having to wait for the results any longer.' — Georgina
Information reviewed by: Dr Kate Webber, Cancer Survivorship Research Fellow and Medical Oncologist, NSW Cancer Survivors Centre; Kathy Chapman, Director, Health Strategies, Cancer Council NSW; Janine Deevy, Adolescent and Young Adult Cancer Care Coordinator, Royal Brisbane and Women's Hospital, QLD; Dr Louisa Gianacas, Clinical Psychologist, Psycho-oncology Service, Calvary Mater Newcastle, NSW; Tina Gibson, Education and Support Officer, Cancer Council SA; A/Prof Michael Jefford, Senior Clinical Consultant at Cancer Council VIC, Consultant Medical Oncologist, Peter MacCallum Cancer Centre and Clinical Director, Australian Cancer Survivorship Centre, VIC; Annie Miller, Project Coordinator, Community Education Programs, Cancer Council NSW; Micah Peters, Project Officer, Education and Information, Cancer Council SA; Janine Porter-Steele, Clinical Nurse Manager, Kim Walters Choices, The Wesley Hospital, QLD; Ann Tocker, Cancer Voices; and A/Prof Jane Turner, Department of Psychiatry, University of Queensland.
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