Improvements in diagnosing and treating cancer mean that more people are surviving and living with cancer. Nearly 1.2 million people living in Australia today have been diagnosed with cancer during their lifetime.
Am I a cancer survivor?
The term 'cancer survivor' is used to describe a person from the time of diagnosis onwards. For many people, survivor is a strong and positive word. Other people do not like being labelled and prefer to look towards a future that is not focused on cancer.
You may see yourself as a survivor as soon as you are diagnosed with cancer, when active treatment stops or when there are no more signs of cancer in the body. Or you may find it difficult to relate to the term survivor. Instead, you may think of yourself as someone who has had cancer or is living with cancer.
Research has shown that getting information about what to expect after finishing primary cancer treatment can help you prepare for life after cancer. This is known as the survivorship phase.
Survivorship care aims to look after your emotional and physical wellbeing once primary cancer treatment is finished. This may include help dealing with treatment side effects and maintaining a healthy lifestyle after treatment.
More about advanced cancer
Finding a new normal
When treatment ends, you may expect that life will soon return to normal. Or you may see the diagnosis as an opportunity to make changes to your life. Over time, cancer survivors often find a new way of living. This process is commonly called finding a new normal and it may take months or years.
Recognising the positive aspects of cancer
Most people say cancer is a life-changing experience. Although having cancer can be very challenging, some people find positive aspects. They may discover an inner strength they didn’t know they had, develop new friendships during treatment or find other sources of support.
Cancer may prompt you to reconsider your outlook on life. You may:
- place more value on spending time with family or friends and choose to focus on the more meaningful relationships in your life
- spend more time doing activities you enjoy, start new activities or visit new places
- reconsider your career goals and work values, and decide to work fewer hours or take on a different role
- have a new focus on healthy living.
Tips for adjusting to life after treatment
The cancer experience doesn’t stop when treatment ends. Give yourself time to adjust to life after treatment. It can be helpful to take each day as it comes and accept that you may have both good and bad days. Everyone is different, but you may find some of the following suggestions useful.
- Reflect on your life – think about your goals and priorities. It may be helpful to write down how you’re feeling in a journal. You may want to reflect on what makes you feel fulfilled or happy, what gives your life meaning and what's most important to you.
- Look after yourself – take the time you need to get used to any changes in your body. Do things at your own pace and rest between activities. Remember, your body is still healing. If you are worried about going out, ask someone to go with you.
- Take time for yourself – make time each day to do something you find relaxing or enjoyable. This could be reading, listening to music, spending time in nature or taking a bath.
- Talk about your emotions – acknowledge your feelings. It may help to share any concerns or worries with your family and friends, your doctor, a psychologist or counsellor.
- Manage your wellness – think about ways you can manage your own wellness and make changes to improve your quality of life. Eating healthy food and being physically active can help your body cope with physical and emotional stress, and make you feel as though you are doing something practical to help yourself.
- Clear your mind – complementary therapies, such as relaxation and yoga, may increase your sense of control, relieve stress and anxiety, and improve mood.
- Seek support – connecting with others who have been through a similar experience may be helpful. Join a support group, attend a survivorship program, listen to survivorship webinars or read stories from other survivors.
- Manage side effects – you may have ongoing side effects after treatment. Talk to your health care team about ways to improve or manage any symptoms.
Busting myths about the end of treatment
I should be back to normal – you may have thought you would just resume your life exactly where you left off before the cancer diagnosis. The reality is often more complex. Some cancer survivors find they can’t or don’t want to go back to how life was before their treatment. Others need time to recover from treatment before they return to their usual activities.
I should feel well – on the outside, you may look healthy. On the inside you may still be recovering physically and emotionally. Many cancer survivors have ongoing health concerns because of the cancer or treatment side effects.
I should not need any more support – you may feel a bit lost when you stop seeing your treatment team, family and friends so often. Some survivors are surprised to find they need more support than ever after treatment ends.
I should feel grateful – survivors can sometimes feel pressure to be grateful for having survived cancer. Instead, the impact of cancer on your life and future may make you feel upset, angry or resentful.
I should be celebrating – you may think that you should be happy because you survived the diagnosis and feel guilty or confused if you’re not happy all the time.
I should feel positive – friends and family may pressure you to think positively all the time. Although it is unrealistic to think positively all the time, this can be a source of worry for survivors.
I should be the person I was before cancer – many survivors say that cancer changes them. You may have a sense of loss for the person you once were or thought you’d be. It can also be difficult when the people around you expect you to return to how you were.
I should be making plans – you may feel both excited and anxious when treatment ends. Many survivors need time to reflect on what has happened before they can think about the future.
I should make big changes – you may feel guilty if you return to your pre-cancer way of life instead of making big changes to your way of life.
Understanding your feelings
While most people adapt well over time to life after cancer treatment, many people experience ongoing fears or concerns. You may find you need a lot of support with how you’re feeling.
Acknowledging how you are feeling may help you to work through your emotions. Remembering how you have coped with difficult situations in the past may give you some clues about helpful ways to cope with your emotions. Most cancer survivors find that they do feel better over time.
Common reactions to finishing treatment
- Relief – you might be relieved that treatment has finished and seems to have been successful. You may welcome the chance to focus on the things you like to do.
- Isolation – you may feel lost or nervous when regular appointments with your health care team reduce or stop. This can feel like losing a safety net. You may also feel lonely if your relationships have changed or people don’t understand what you’ve been through.
- Fear – you may worry that the cancer will come back.
- Uncertainty – you may avoid making plans for the future because you feel uncertain about your health. This is very challenging, but you can learn to manage it effectively.
- Frustration – you may feel frustrated because you think your family and friends expect too much from you. Or you may feel discouraged because you can’t do the things you want to do.
- Hopeful – you may feel hopeful about the future, and happy to be getting back to your regular routine.
- Survivor guilt – you may feel guilty or question why you survived cancer when others didn’t. This can be confronting.
- Anxiety – you may be anxious before follow-up appointments and feel these appointments 'bring it all back'. Waiting for test results can also be an anxious time.
- Worry – you may be concerned about treatment side effects, how long they’ll last and whether they’ll affect your life. Many survivors are worried about their finances or being a burden to their family. Other survivors worry about returning to work and dealing with questions from colleagues.
- Lack of confidence – you may feel differently about your body and health. You may not trust your body and think it has let you down. You may not be physically able to do some of the things you did before treatment. Or you may worry about the impact on your ability to remember things and process information. Many people feel vulnerable and self-conscious about their body image and sexuality.
- Heightened emotions – you may become tearful or emotional very quickly, particularly when someone asks how you are. It is normal to feel like this.
- Anger – you may be angry about your cancer experience and how it has affected your life.
- Delayed emotions – you may find your emotions catch up with you now that treatment is over. Many people do not expect negative emotions once their treatment ends and find this confusing.
Friends and family may advise you to 'think positively'. It is almost impossible to be positive all the time – everyone has good and bad days, before and after a cancer diagnosis.
There is no scientific evidence to suggest that positive thinking has any impact on surviving cancer. However, many survivors say that feeling hopeful helped them to cope with their illness and make positive changes, such as doing more exercise or improving their diet.
Feeling down or depressed
It is common to feel low or depressed after treatment ends. Cancer survivors often experience worry or periods of feeling down for months or even years after treatment. You may feel sad or depressed because of the changes that cancer has caused, fear that the cancer will come back or worries about the future.
Many people feel disconnected from their life before cancer. Others wonder if they will be able to work again and whether their family will cope if they can’t earn enough money. Sometimes you may feel down for no particular reason.
Support from family and friends, other cancer survivors or health professionals may help you manage these periods.
Contact cancer support
Warning signs of depression
At any stage after a cancer diagnosis, it is natural to have days when you feel sad or worried. Sometimes a person may begin to feel stuck in their distress and become depressed or anxious.
Depression is more than feeling down for a few days. Seek help from your general practitioner (GP) if you:
- find it difficult to function on a daily basis
- have lost the desire to do things that previously gave you pleasure
- feel very sad and low most of the day, nearly every day
- begin to rely on alcohol or drugs
- eat more or less than usual
- are sleeping too much or having a lot of trouble sleeping
- feel restless, agitated, worthless, guilty, anxious or upset
- think you are a burden to others
- worry that you might hurt someone
- think about self-harm or taking your own life.
Some of these symptoms can also be caused by other medical conditions. Talk to your doctor about how you are feeling and ask for help. Anxiety and depression are quite common among people who have had cancer, but there is no need to face this experience alone.
Getting help with depression
Depression generally won’t go away by itself – specific treatment is needed. Treating depression early may mean that you can deal with the problem quickly and avoid symptoms becoming worse.
There are ways to treat depression, which don’t necessarily involve medicines. Treatment may include therapy provided by a GP, psychologist, psychiatrist, social worker or counsellor. Some people are able to get a Medicare rebate for these sessions under a Mental Health Treatment Plan. Ask your GP if you are eligible. You can also call 13 11 20 for counselling support.
Some people find online programs or smartphone apps helpful in managing depression and anxiety. Examples include Mood Gym, My Compass or Mental Health Online.
For information about coping with depression and anxiety, call Beyond Blue on 1300 22 4636. If you are having intense thoughts about hurting yourself or others, seek immediate assistance by calling Lifeline on 13 11 14 for 24-hour crisis support. In an emergency, call Triple Zero (000).
How to manage your mood
- Take care of yourself. Eat a well-balanced diet, drink plenty of water and limit alcohol.
- Do some regular physical activity. This can help with feelings of anger, stress, anxiety and depression, manage fatigue and improve sleep. Even a short daily walk will help.
- Connect with other people doing things you enjoy.
- Spend time with a pet.
- Share your fears and concerns with someone close to you. This can help you feel less alone.
- Spend time outside in the fresh air. A change of scenery might lift your spirits.
- List activities you would like to do and plan to do one of these activities each day.
- Write down your feelings or express yourself in painting, colouring, music or singing.
- Establish a routine. Get up at the same time each morning. Make an effort to have a shower and get dressed.
- Allow yourself a 'low mood day' every now and again. You don’t have to be 'up' every day.
- Practise letting your thoughts come and go without getting caught up in them. Try to focus on the present moment, rather than worrying about upcoming check-ups or tests. You may find our Finding Calm During Cancer podcast helpful with this.
- Keep a record of positive things that happen each day. These don’t have to be big things, it could just be an encouraging smile from a neighbour.
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.
Will the cancer come back?
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.
Fear of getting a different type of cancer
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.
Checking signs of a new cancer
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).
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.
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.
- Listen to our 'Managing Fear' episode of The Thing About Cancer podcast.
Join a clinical trial
Doctors and other health professionals conduct clinical trials to look at ways to improve the care and quality of life of cancer survivors. Areas studied include:
- how to best support the mental health of cancer survivors and deal with the fear of recurrence
- wellbeing and healthy lifestyle programs for survivors
- how to best treat common side effects such as fatigue, early menopause and lymphoedema
- understanding more about the causes of common side effects
- improving follow-up care for survivors.
You may want to consider joining a clinical trial when your cancer treatment finishes. Over the years, clinical trials have improved treatments and led to better outcomes for cancer survivors. You may find it helpful to talk to your specialist, treatment team or GP, or to get a second opinion.
Living Well After Cancer
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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.