Living Well After Cancer
Fear of cancer coming back
It is common to feel anxious or frightened about the cancer coming back (recurrence). Most cancer survivors are likely to experience this fear to some degree, and it may come and go for many years. You can learn ways to manage this fear.
Worrying about recurrence may affect your physical wellbeing, as well as your ability to enjoy life and make plans for the future. Some survivors describe it as a dark cloud or a shadow over their life. Over time, this fear usually fades, but it can return at certain times, such as:
- before follow-up appointments, tests and scans
- special occasions, such as birthdays or holidays
- anniversaries of the date you were diagnosed, had surgery or finished treatment
- when other people are diagnosed with cancer
- when you have symptoms similar to those when you were first diagnosed
- the death of a friend or family member
- passing by the hospital where you had treatment, or visiting someone in the same hospital
- hearing media reports about cancer, new treatments and celebrities with cancer
- seeing cancer-related fundraising campaigns or advertisements.
Ways to manage the fear of recurrence
- Talk to your treatment team about your risk of recurrence and how this will be managed. Ask about the symptoms to look out for and how to distinguish normal aches, pain or sickness from cancer symptoms.
- Focus on things you can control, such as being actively involved in your follow-up appointments and making positive changes to your lifestyle to reduce the risk of recurrence.
- Recognise the signs of stress and anxiety, such as a racing heartbeat or sleeplessness. Manage these in a healthy way, for example, you could try yoga, mindfulness meditation, taking slow, deep breaths or going for a walk.
- Speak with a counsellor or psychologist if the fear of recurrence is overwhelming. They may be able to teach you some strategies to help manage your fears.
- Joining a support group may help.
- Consider getting involved in a creative activity such as drawing, painting or writing. Some people find this helpful in working through their emotions.
- Side effects of treatment can make it harder to cope emotionally. Talk to your doctor about ways to manage any ongoing treatment side effects you are experiencing.
For more information, listen to our ‘Managing Fear’ podcast episode
You may wonder how likely it is that the cancer will come back or how long people with the same type of cancer live. Cancer is most likely to recur in the first five years after treatment ends. Generally, the more time that goes by, the less likely it is that the cancer will come back.
The risk of cancer coming back is different for each person and depends on many things, including the type and stage of cancer, genetic factors, type of treatment and time since treatment. Your specialist can discuss your risk with you.
Even when there is no evidence of active cancer in the body, many doctors are wary of using the term “cure” because undetected cancer cells can remain in the body after treatment, causing the cancer to return. Instead they may talk about the “five-year survival rate”. Australia has among the best survival rates for cancer in the world.
The five-year survival rate is determined by the percentage of people alive five years after diagnosis. It does not mean you will only survive for five years. For example, about 91 out of 100 people (91%) with breast cancer will be alive five years after they are diagnosed. Many of these people live much longer than five years after diagnosis.
How accurate are the statistics?
Five-year cancer survival rates are a guide only. They generally include everyone with a particular type of cancer, at all stages and grades of the disease. For most cancers, people diagnosed with early-stage disease (cancer that is small and has not spread) are likely to have a much better outlook than people diagnosed with advanced disease (cancer that has spread to other parts of the body). With cancer treatments improving all the time, your outcome (prognosis) is likely to be better than the statistics currently available as they take many years to obtain.
Some survivors develop a second cancer that is different to the first cancer. The following things may increase your risk of developing another type of cancer:
- past or continuing exposure to cigarette smoke or other cancer-causing agents (including asbestos, heavy metals, diesel engine exhaust, solvents and pesticides)
- skin damage caused by exposure to ultraviolet (UV) radiation from the sun or solariums
- getting older
- being born with an inherited gene that increases the chance of developing some cancers (about 5% of cancers)
- having some forms of cancer treatment, particularly as a child
- lifestyle factors such as eating an unhealthy diet, drinking too much alcohol, being overweight, and not getting enough exercise.
Some of these things you can change and others you can’t. Talk to your doctor if you are concerned about any risk factor.
For some people, cancer does come back after treatment. Advanced cancer usually can’t be cured, but it can often be controlled. Sometimes treatment can shrink the cancer, stop or slow the spread of advanced cancer, or relieve side effects. This can help maintain quality of life for several years.
This information is for people who have finished primary cancer treatment. For information about dealing with the emotional, practical and physical
aspects of a cancer recurrence call Cancer Council 13 11 20.
It’s important to know what is normal for you. If you notice any unusual changes in your body or have any concerns, see your GP as soon as possible. Don’t wait until your next scheduled check-up.
The main signs and symptoms to look out for include:
- a lump, sore or ulcer that doesn’t heal
- a mole that bleeds or has changed shape, size or colour
- a cough or hoarseness that doesn’t go away, or a cough that produces blood
- a change in bowel habits, such as blood in your bowel movements, or diarrhoea or constipation that lasts for more than a week
- problems or changes with urinating
- persistent indigestion or difficulty swallowing
- abnormal bleeding or bruising
- unusual changes in the breasts or testicles
- abdominal (belly) pain or bloating that doesn’t go away
- unexplained changes in your general health, such as weight loss or gain, night sweats, loss of appetite and loss of energy (fatigue).
Take part in cancer screening
Screening is organised testing to find cancer in people before any symptoms appear. Australia has free national screening programs for bowel cancer (people aged 50–74), breast cancer (women aged 50–74) and cervical cancer (women aged 25–74). These are currently the only cancers in which organised screening has been shown to be effective.
Trials are ongoing to develop screening programs for other cancers. Whether these screening programs are still appropriate for you will depend on the type of cancer treatment you had. For more information, talk to your GP or call Cancer Council 13 11 20.
Featured resource
This information is reviewed by
This information was last reviewed November 2021 by the following 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.