Last reviewed March 2012
- Back to 'normal'
- Finding a new 'normal'
- Understanding your feelings
- Common feelings
- Accepting your feelings
- Follow-up care
- Communicating with family and friends
- Treatment side effects
- Reducing the risks of your cancer coming back
- Insurance and superannuation
- Working after treatment ends
- Last reviewed by
The impact of cancer does not always end when treatment finishes.
This information is for people who have finished active treatment for cancer such as surgery, chemotherapy or radiotherapy. It is about the potential emotional, physical, practical or social outcome you may face now treatment is over. These challenges will vary depending on the type of cancer you were diagnosed with and the treatment you received.
There are approximately 920,000 people who have been diagnosed with cancer at some stage in their life currently living in Australia.
The term ‘cancer survivor’ means different things to different people. For some it means anyone who has been diagnosed with cancer. Others use it to refer to people who are alive many years after their cancer treatment. You may feel survivorship is a phase that you move in and out of at different times.
The idea of being a survivor brings many wide-ranging reactions. For many people it is a strong and positive label. However some people don’t like it because they feel it implies they will struggle to cope with the cancer. You may find it difficult to relate to the title of survivor because you believe your treatment was relatively straightforward compared to other people. You may refer to yourself as living with cancer or someone who has had cancer. No matter how you feel about the word ‘survivor’, we hope this information will be helpful.
The transition from patient to survivor is different for everyone. Some people consider themselves a survivor from the time they are free from signs of cancer (in remission), however for others this may occur when active treatment stops. Either way you may wonder, what now?
Cancer is often described as a journey that starts at diagnosis. During treatment some people feel their life is on hold. After treatment ends it may be hard to know how to resume normal activities. This is described as ‘like being in limbo’.
Survivors may expect life to return to what it was like before the cancer diagnosis. For many people, though, it isn’t that simple. The reality is often more emotionally and physically complex.
Some cancer survivors find they can’t - or don’t - want to go back to how life was before their treatment.
Misconceptions about treatment ending
- I should be celebrating—some survivors feel they should be happy and full of wisdom because they survived, and may feel guilty or confused if they don’t.
- I should feel well—many cancer survivors have ongoing health concerns because of the cancer or treatment side-effects. These may include fatigue, sleep disturbance, physical disability, poor body image or self-esteem, pain, anxiety or depression. The after-effects of treatment may make everyday life difficult.
- I should be the person I was before cancer—many survivors say that cancer changes them. You may need time to adjust to changes in your body or physical appearance. You may feel different after treatment, even though you look the same. Many survivors feel a sense of loss for the person they once were or thought they’d be.
- I should not need support—some survivors are surprised to feel that they need more support than ever now
- I should feel grateful—survivors can sometimes feel pressured to feel grateful. However the impact of cancer and its treatment on your life and future may leave you feeling upset, angry and resentful.
- I should be over it—after finishing treatment, people may expect life to return to the way it was before the cancer diagnosis. For many people the reality is more emotionally and physically complex. Some cancer survivors find they can’t or don’t want to go back to how life was before their treatment. Many feel as though they have fought a battle and need time to recover.
Many survivors say cancer changes them. After treatment they may feel different, even though they look the same. With time survivors often find a new way of living. Many call this a ‘new normal’. It may take months or years to find a ‘new normal’.
It’s common for people to feel both excited and anxious when treatment ends. Many say they need time to stop and reflect on what has happened before they can think about the future. This process may mean they re-evaluate and change their values, goals, priorities and outlook on life.
- Many survivors feel a sense of loss for ‘the person I once was’, ‘the way things used to be’ and ‘the things I used to do’.
- Some feel they should be happy and full of wisdom because they survived but instead feel guilty that this isn’t the case.
- Some people feel as though they have fought a battle and need time to rest. Others want to return immediately to their previous life.
How you feel and cope will depend on the type of cancer and treatment you had, and what you’re like as a person. Any long-term side effects from your treatment will also play a big part.
Many cancer survivors have ongoing health concerns because of the cancer or due to treatment. These may include fatigue, difficulty sleeping, pain and depression. The after-effects of treatment can make everyday life difficult.
Your family and friends may act like your cancer experience is over, while you feel like it isn’t. Your family and friends care for you and it’s natural for them to want the distress of cancer to be behind you. They may not fully understand what you’ve been through, and might not realise that the cancer experience doesn’t necessarily stop when treatment ends.
It may be helpful to allow yourself time to adjust to these changes, and to explain to your friends and family that you need their support during this period. Read more…
Adjusting to the ‘new normal’
- Assess your life. You may want to ask yourself, What is important to me? Think about starting an activity you have always wanted to do but never had time for. Undertake some further education for that dream job or join a group that does something you enjoy like painting, woodwork or singing.
- Focus on each day and expect both good and bad days.
- Avoid pressure to make decisions or start new activities straight away.
- Talk to your family and friends about your concerns or seek professional help
- Talk to your doctor if your mood is low and not getting better.
- Consider learning some form of relaxation, such as meditation, visualisation, yoga or deep breathing.
- Keep a journal or write a blog. Many people find it helps to write down how they’re feeling and to see how it changes over time.
- Join a support group or take part in a survivors’ event like Relay For Life
- Read other survivors’ stories. Learning how other people have managed a cancer diagnosis may help.
Can cancer be a positive experience?
Some people find there are positive aspects to having cancer. Some even refer to the disease as a life-changing experience. Cancer may cause you to re-examine your life choices and may motivate you to travel, take up new activities or make lifestyle changes (e.g. starting exercise or quitting smoking). This shift is often gradual as even positive change can take getting used to.
What if I don’t want to make changes after cancer?
Some people are happy with the way things were before the cancer diagnosis. This is okay; you don’t have to make life changes if you don’t want or need to.
It’s natural to have many different—and sometimes conflicting—feelings after treatment ends.
Although everyone is unique many survivors have similar feelings.
Not everyone will have difficulties after their treatment finishes but, for many people, their concerns and fears are ongoing. You may need some support maybe even more than you did when you were diagnosed and during your treatment.
There are a number of common feelings and emotions that you might experience.
You might be relieved that the treatment has finished and seems to have been successful. You may feel happy to focus on your regular activities.
One of the most common feelings people have is a sense of being on their own.
When you were diagnosed you may have focused on treatment, and now that it’s over you can let go of your emotions. You may feel relieved it’s over, but angry the cancer experience isn’t.
After treatment has finished it’s normal to feel worried and uncertain.
Fear of recurrence
The most common fear is wondering if the cancer will return.
Some people feel frustrated because they think their family and friends have unreasonable expectations.
Anxiety about follow-ups
The uncertainty about the tests you will need and how often you will need check-ups can make you feel anxious.
Many survivors find planning for the future difficult because they feel uncertain about their health.
Lack of confidence
You may feel differently about your body and health. Many people say they feel vulnerable and less confident.
Feeling down or depressed
Feeling low or depressed after treatment finishes is common. Depression is more than feeling down for a few days. It may mean you feel in a low mood most of the time or your sadness lasts two weeks or more.
Most people find they need time to reflect on what has happened and consider their future. They are often too busy or unwell during treatment to do this.
Acknowledging how you’re feeling may help you cope with your emotions. Most cancer survivors find they do feel better with time. However, you may be surprised to find that months or even years after treatment, you have periods of feeling down. This is common for many people who have recovered from cancer.
Many friends and colleagues may advise you to ‘think positively’. This can be difficult when you are dealing with what has happened and how your life has changed. There is no scientific evidence to suggest that thinking positively has any impact on if, and for how long, you survive cancer. However, many survivors say feeling hopeful helped them to cope through their illness.
After your treatment has finished you may need regular check-ups. These will allow your doctor to monitor your health and well-being.
Follow-up care depends on the type of cancer and treatment you had plus any side effects you are experiencing. It is usually different for each person.
Your treatment summary
It’s a good idea to ask your specialist 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 the following information:
- type of cancer
- date of diagnosis
- diagnostic tests performed and the 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 radiotherapy, 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.
How often do I need check-ups?
The frequency of check-ups varies depending on the type of cancer you had, the treatment you needed and your general health.
Some people have check-ups every three to six months for the first few years after treatment then less frequently after that. Talk to your doctors about how often you need to see them.
Who do I see for follow-up care?
You may have follow-up appointments with the same doctor or team of doctors, who provided your cancer treatment.
In addition you may see your GP, who can help 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.
How can I prepare for check-ups?
Many people like to have a family member or friend go with them, to take part in the discussion, take notes or simply listen. If you have several questions or concerns ask for a longer appointment.
Tell your doctor 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 therapies you are using.
You can also talk to your health care team about other issues. For example you may want to talk about changes to your sex life, 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.
What do check-ups 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 the cancer may be coming back
- do a physical examination
- 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.
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 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
- other people (friends or family) make comments that upset you.
Finding ways to cope with your worries before check-ups may help.
- 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.
- Use it as an opportunity to have any new questions answered.
- Book the first appointment of the day so you don’t have time to dwell on the appointment.
Once you have had a few check-ups and all is okay, you may feel less anxious.
After treatment is over your family and friends may also need time to adjust. Research shows that carers often experience high levels of distress even when treatment has finished.
Your cancer diagnosis may make people around you question their own priorities and goals. Like you they may be concerned about the cancer coming back.
How family and friends may feel after treatment ends
People close to you can have a range of reactions when your cancer treatment ends.
They may feel:
- relieved that you’re okay
- happy to focus on others and themselves
- confused especially if your relationship has changed
- pleased they can catch up with family and friends without cancer dominating the conversation
- worried about what the future holds.
When others don’t understand
When treatment finishes your family and friends may expect you to act the same as before the cancer. If you have changed people close to you may be disappointed, worried or frustrated.
Friends and family may say things like “but you look fine”, “your treatment has finished now” and “the cancer has gone, hasn’t it?”. They may have difficulty accepting that some symptoms, like fatigue, can persist for a long time and that adjustments may need to be made. You may feel you’re expected to be grateful you’re still alive no matter the side effects.
It’s natural for family and friends to want the distress and disruption of cancer to be behind you. They care for you and want you to be well.
You may need to tell them that your recovery is ongoing and you need time to recover after what you’ve been through. You might not be able to just ‘get on with it’ as quickly as they might want you to.
It can take time to get over the side effects of treatment. Side effects vary depending on the type of cancer you had, its stage and the treatment you were given. The changes can be both physical and emotional.
Some problems resolve quickly; others can take weeks, months or even years to improve. Your body will cope with the treatment and recovery in its own way. It is best not to compare yourself to others.
For some people there may be permanent or late side effects. Late effects are problems that develop a long time after treatment finishes, whereas permanent effects may have been present since treatment finished and may never completely go away. If you are concerned about a new side effect talk to your doctor.
Common side effects include:
- feeling very tired (fatigue)
- sleeping difficulties
- loss of self-esteem and confidence/changed body image
- changes in sexuality/intimacy
- erectile dysfunction
- sudden menopause
- fertility problems
- swelling in the limbs (lymphoedema)
- memory changes (sometimes called chemo brain)
- feeling down/depressed
- problems with eating or drinking
- weight gain or loss
- changes in bladder and bowel function
- nerve damage (peripheral neuropathy)
- heart problems
- hearing problems.
Research has found that 20 out of every 100 cancer survivors (20 per cent) have ongoing side effects one to five years after diagnosis.
It can be difficult to deal with any change in how your body looks, feels or functions. Other people may not understand how much these changes affect your day-to-day living, especially if it has been a few months or years since your treatment has finished. This can be frustrating and make it harder to cope with the side effects.
For further information and support contact Cancer Council 13 11 20.
Many cancer survivors want to adopt a healthier lifestyle after their cancer experience.
Studies on people who have survived cancer are limited compared with studies about preventing cancer. Research shows some people who have had cancer may be at an increased risk of other health problems such as heart disease, lung problems or diabetes.
While more research needs to be done the lifestyle changes recommended for cancer prevention may also help reduce the chance of the cancer coming back or a new cancer developing.
They can also prevent other health problems.
Maintain a healthy body weight
A healthy body weight is important for reducing the risk of cancer recurrence and improving survival. Being overweight or obese also increases your risk several types of cancer, type 2 diabetes, cardiovascular disease, high blood pressure, osteoarthritis and many other conditions.
To reduce your risk, aim to keep your Body Mass Index (BMI) and waist circumference within the recommended range.
BMI is a measure of your body weight in relation to your height. A score more than 25 is classed as overweight and a score more than 30 is obese. To work out your BMI, you need to know your weight (in kilograms) and your height (in metres).
Click here for a BMI Calculator
Measuring waist circumference
Waist circumference is another way to measure body weight. For some diseases - including post-menopausal breast cancer - fat carried around the abdomen and waist is a greater risk than fat carried on the hips and thighs.
Take your waist circumference measurement at the narrowest point between the lower rib and the top of the hips (the iliac crest) at the end of a normal breath.
Men should aim for a waist circumference below 94 centimetres, while women should aim for a waist circumference below 80 centimetres.
Eating a healthy diet
Fruit and vegetables are low in fat and calories and help maintain a healthy body weight. They are high in nutrients, fibre, vitamins and minerals.
There is no need to give up meat. Lean red meat is an important contributor to dietary iron, zinc, vitamin B12 and protein.
Cancer Council SA also recommends eating wholegrain breads and cereals as part of a healthy diet and to maintain a healthy body weight.
- Aim to eat five serves of vegetables and two serves of fruit each day. One serve of vegetables is equal to half a cup of cooked vegetables or one cup of salad vegetables. One serve of fruit is equal to one medium sized piece of fruit.
- Limit red meat intake to three to four serves a week. One serve should roughly fit into the palm of your hand.
- Limit or avoid eating processed meats like sausages, frankfurts, salami, bacon and ham.
Dietitians can help you with any nutrition concerns. They are available in all public hospitals and some private hospitals. Community health centres often have a dietitian. Ask at your local centre. The Dietitians Association of Australia can direct you to an accredited practising dietitian in your area or to one who has experience in particular problems. Go to www.daa.asn.au or call 1800 812 942.
People who have survived cancer often consider taking dietary supplements such as vitamins and herbal products to optimise their health.
Generally dietary supplements should never replace whole foods like fruit and vegetables which are the best source of vitamins and minerals. Discuss plans to take vitamin supplements with your doctor or dietitian.
Frequently asked questions about food
Should I stop eating meat?
There is no conclusive evidence vegetarians or those who become vegetarians do better after cancer treatment. However eating too much red meat, especially processed meats such as sausages, bacon and frankfurts, is associated with a slightly increased risk of bowel cancer and possibly prostate, oesophageal, lung, pancreatic, endometrial and stomach cancer.
It is important to eat a diet high in plant foods such as fruits, vegetables and cereal foods, but there is no need to give up meat.
Should I only eat organic foods?
The term ‘organic’ is used to describe foods grown without pesticides or herbicides. Organic fruit and vegetables tend to be higher in vitamin C compared with conventionally grown varieties.
However all types of fruits and vegetables are good for your health whether organic or conventionally grown. There is no current evidence organic fruit and vegetables are more effective in reducing cancer risk than conventionally grown fruit and vegetables. It is a good idea to thoroughly wash fruits and vegetables to remove any traces of pesticides.
Which is best – raw or cooked vegetables?
Try to eat both raw (e.g. salad) and cooked vegetables. Boiling vegetables for a long time can reduce the amount of vitamins.
Steaming and microwaving vegetables are good cooking methods to maintain their nutritional goodness.
Should I juice vegetables and fruit?
It is better to eat whole vegetables and fruit rather than as juices. Whole fruit and vegetables contain fibre which is protective and filling. Juices are much higher in kilojoules (calories) than fresh vegetables and fruit.
I saw a news story about a certain type of food that is said to prevent/cause cancer. Should I eat a lot of it/avoid it?
News stories about certain foods or diets can be confusing. They sometimes present evidence relating to studies done in laboratories rather than on humans.
Certain types of fruit and vegetables are sometimes called ‘superfoods’. Although all fruit and vegetables are healthy and should be eaten regularly there is no single superfood. This word may be used as a marketing term rather than as scientific fact. It’s wise to consider whether an advertiser is promoting the superfood label.
There is no single food that has been shown to cause cancer.
Evidence supports eating plenty of fruit and vegetables and moderate serves of red meat and energy-dense foods. Talk to your health care team or call Cancer Council 13 11 20 for more information.
The iheard website has been created by Cancer Council to dispel the many myths, rumours and fanciful claims about cancer.
If you are a smoker Cancer Council SA strongly recommends that you quit.
Many smokers find quitting difficult. Don’t be discouraged if it takes several attempts before you are able to quit successfully.
- Ask your doctor for advice. Subsidised prescription medications are available on the Pharmaceutical Benefits Scheme (PBS).
- Call Quitline 13 7848 to talk to a counsellor and request a free Quit pack.
- Download the Quitline app My QuitBuddy
- Think of previous attempts to quit as practice and learn what worked and what didn’t.
- Try and avoid tempting situations e.g. switch to tea if having a coffee triggers the urge to smoke.
Be physically active
Physical activity has been shown to be helpful to cancer patients, with positive outcomes from physical activity before, during and after treatment. It may be important for reducing the risk of some cancers coming back. There are many other benefits to being active: exercise can also boost energy levels, decrease fatigue, increase strength, relieve stress, and lower anxiety and depression.
If you are unsure about whether you are well enough to exercise or if it will interfere with your recovery talk to your doctor first.
Start physical activity slowly and increase gradually. Every person is different and the amount and type of activities will vary. Doctors usually recommend about 20 to 30 minutes a day of moderate physical activity.
- Walking is great exercise. Walk with a friend or join a walking group, walk to the corner shop instead of driving or try walking in the water instead of swimming.
- Do some gardening.
- Do some simple stretching exercises while watching television.
- Take the stairs instead of the lift or escalators.
- Do vigorous housework such as vacuuming or mowing the lawn.
- Get off the bus or train one stop earlier or park further away from your destination and walk the rest of the way.
- Take your children or grandchildren to the park or kick a ball around the backyard.
- Take a dance class.
Protect yourself in the sun
Protect your skin when the UV is 3 or above. This is particularly important if you have just finished chemotherapy as your skin may be more sensitive to sunlight.
- Wear an SPF 30 or higher broad spectrum sunscreen and reapply every two hours
- Protect your eyes with wraparound sunglasses that meet the Australian Standards
- Wear clothing that covers as much of your skin as possible
- Protect your face, neck and ears with a broad-brimmed hat
- Stay in the shade when the UV index is three and above.
Limit or avoid alcohol
Alcohol is a known risk factor for some cancers particularly cancer of the mouth, throat, oesophagus, bowel, liver and breast. Limiting alcohol may also decrease the risk of cancer recurrence.
Cancer Council SA recommends that, to reduce the risk of cancer, you should limit or avoid alcohol.
For men and women who choose to drink alcohol, the recommended amount is an average of no more than two standard drinks a day.
One standard drink equals:
- 220 to 250 ml alcopop/alcoholic soda (⅔ bottle)
- 100 ml wine (one bottle equals seven standard drinks)
- 60 ml of sherry
- 30 ml of spirits
- 425 ml (one schooner) of light beer
- 285 ml (one middy) of full strength beer
Applying for new insurance (life, income cover or travel) may be more difficult because you have had cancer. You will need to provide your medical history for many insurance policies. However you shouldn’t have problems claiming on policies you had before diagnosis.
If your mortgage is associated with some kind of insurance you may need to let your lender know that you had cancer.
It may be difficult to get travel insurance that covers medical problems related to the cancer but you should be able to get a policy to cover basics such as lost baggage, theft and cancelled flights.
You may also be able to claim on an insurance policy provided by your superannuation fund. For more information, talk to the fund manager or contact National Legal Aid on 1300 888 529 or www.nla.aust.net.au.
Work is an important part of life for many people. Besides income, it can provide satisfaction and a chance to socialise. If you took time off work for treatment you may choose to return to work or get a new job when you have recovered. Many people need to keep working to provide an income for themselves and their families.
Do I have a right to return to my job?
Australian laws require an employer to take reasonable steps to accommodate the effects of an employee’s illness e.g. providing a supported chair or moving your workstation to the ground floor.
If you are unable to carry out your previous role your employer doesn’t have to offer you a different job, but they can’t terminate your employment for at least 12 months.
Must I disclose that I had cancer when applying for a new position?
While some people want to mention their cancer experience when they apply for a job you don’t have to tell a potential employer unless it is relevant to the position. If you’d prefer not to, and are asked about a gap in your resume, you might want to say that you had a health issue and it’s now resolved.
A prospective employer can ask you about your ability to perform tasks that are an essential part of the job e.g. lifting heavy boxes. If something is a problem for you because of the cancer or treatment it’s best to mention it at the interview.
What if I can no longer work?
If treatment has made it impossible to return to your previous work then rehabilitation and retraining programs may help you prepare for another job. Some employers have rehabilitation schemes. Discuss this issue with your treating specialist or GP who may be able to help you apply for government support. You may also be able to access some income protection insurance from your superannuation provider or a pre-existing insurance policy.
Where can I get more information?
Cancer Council SA has more detailed information about employment and cancer. Follow this link to download a free copy of Cancer, Work and You.
Last 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.