The impact of cancer does not always end when treatment finishes.
This information is for people who have finished active treatment—such as surgery, chemotherapy or radiotherapy—for cancer. It discusses the potential emotional, physical, practical or social challenges and changes you may face now treatment is over. The challenges you experience may vary depending on the type of cancer you were diagnosed with and the treatment you received.
- Back to 'normal'
- Finding a new 'normal'
- Understanding your feelings
- Follow-up care
- Communicating with family and friends
- Reducing the risks of your cancer coming back
- Legal, financial and workplace concerns
- Seeking support
Cancer survival rates for some common cancers have increase by as much as 36 per cent—meaning that today, almost seven in 10 Australians will survive at least five years after a cancer diagnosis.
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 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.
The idea of being a survivor brings many wide-ranging reactions. For many people it is a strong and positive label. However, it’s not a term for everyone. Instead, 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.
Cancer is often described as an experience that starts at diagnosis. During treatment some people feel their life is on hold, while after treatment it can 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 their cancer diagnosis. For many people, though, it isn’t that simple. The reality is often more emotionally and physically complex.
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. 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. If you find you are in need of support, contact 13 11 20 to arrange free counselling for yourself, or for family members.
- 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. Some cancer survivors find they can’t or don’t want to go back to how life was before their treatment. Many feel they 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 been through a lot and need time to rest, while 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 in how you find your ‘new normal’.
Some common side effects or ongoing health concerns caused by the cancer or its treatment include fatigue, difficulty sleeping, pain and depression. These after-effects can make everyday life difficult.
The way your family and friends adjust to life after cancer may also impact how you come to terms with your new normal. They may act like your cancer experience is over, while you feel like it isn’t. Your family and friends care for you, but 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.
Allow yourself time to adjust to these changes, and explain to your friends and family that you may continue to need their support during this period.
Adjusting to the ‘new normal’
It may take some time for you—and those close to you—to adjust to life after cancer. While you adjust you might like to try and:
- 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 how you are feeling.
- 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
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’. A diagnosis of cancer may cause you to re-examine your life choices and may motivate you to travel, take up new activities or make lifestyle changes—like starting exercise or quitting smoking. Your feelings about your cancer experience are personal, but if you find your mood is low and not getting better, it’s important to seek help and speak to your GP.
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.
If you find you need support at any stage of your cancer experience, call Cancer Council SA’s 13 11 20 to speak to an experienced cancer nurse.
There are a number of common emotions that you might experience:
- Relief. 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.
- Feeling disconnected. One of the most common feelings people have is a sense of being on their own.
- Anger. 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.
- Worry. After treatment has finished it is common to feel worried and uncertain.
- Fear of recurrence. The most common fear is wondering if the cancer will return.
- Frustration. Some people feel frustrated because they think their family and friends expect too much from them. Others feel frustrated because they can’t do the things they want to do.
- Anxiety about follow-ups. Many people feel anxious before follow-up appointments. Waiting for test results can also be a very anxious time.
- Uncertainty. 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.
Accepting your feelings
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 been diagnosed with cancer.
Well-meaning friends, family and colleagues 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 thinking positively has any impact on if, and for how long, you survive cancer. However, many survivors say feeling hopeful is something that helps 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 wellbeing.
The follow-up care you receive depends on the type of cancer and treatment you had, plus any side effects you are experiencing. It is usually different for each person.
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.
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.
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 required 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.
It is important that you are honest with your doctors. This 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 do I manage my check-up anxiety?
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. You can:
- 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. And, like you, they may be concerned about the cancer coming back.
How do family and friends 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
What if people 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, but 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 be difficult to deal with any change in how your body looks, feels or functions, and 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 side 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.
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 finished. This can be frustrating and make it harder to cope with the side effects.
Common side effects
- 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
Many cancer survivors choose to adopt a healthier lifestyle after their cancer experience to help reduce their risk of further cancer diagnosis.
There are a number of ways that you can improve your health, and reduce your risk of cancer.
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.
Click here for a BMI Calculator.
Waist circumference can be used to indicate health risk. Having fat around the abdomen or waist—regardless of your body size—means you are more likely to develop certain obesity-related health conditions, including cancer.
Take your waist circumference measurement at the narrowest point between the lower rib and the top of the hips 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
A healthy, balanced diet will not only give you more energy and help you to maintain a healthy weight; it can also cut your cancer risk.
While there is no one food that can protect against cancer, there are steps you can take to lower your risk through a healthy, balanced diet that includes a variety of foods from the five food groups.
Cancer Council supports the Australian Dietary Guidelines published by the National Health and Medical Research Council.
Frequently asked questions about food
Do I need to take a dietary supplement?
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.
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.
Be physically active
Being physically active and limiting sedentary behaviour is essential for health and wellbeing, with positive outcomes before, during and after cancer treatment.
Research shows that physical activity can both reduce the risk of some cancers and help prevent some types of cancers coming back.
There are many other benefits to being active: exercise can also boost energy levels, decrease fatigue, increase muscle strength, relieve stress, and lower anxiety and depression.
Around 30-60 minutes of moderate intensity exercise five or more days per week is recommended to reduce your cancer risk.
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.
Remember to start physical activity slowly and increase gradually. Every person is different and the amount and type of activities will vary.
Protect yourself in the sun
This is particularly important if you have just finished chemotherapy as your skin may be more sensitive to sunlight.
Being SunSmart is a simple and effective way to reduce your risk of developing skin cancer.
When UV levels reach three and above, it is recommended that you protect your skin in five ways for maximum protection—Slip, Slop, Slap, Seek and Slide.
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.
- Call Quitline 13 78 48 to talk to a counsellor and request a free Quit pack.
- Download the Quitline app My QuitBuddy
- Ask your doctor for advice. Subsidised prescription medications are available on the Pharmaceutical Benefits Scheme (PBS).
Limit or avoid alcohol
Alcohol is a known risk factor for some cancers. Limiting alcohol may decrease the risk of cancer recurrence.
If you choose to drink alcohol, stick to the National Health and Medical Research Council guidelines and limit your intake to two standard drinks per day.
After any serious illness, people may have concerns about financial issues, insurance policies, superannuation and work.
For many people, cancer treatment can be a financial strain. This may be caused by extra out-of-pocket costs for medicine or travel expenses, or from loss of income. These extra costs can cause you and your family a lot of stress, but support is available:
- Ask your social worker about any financial or practical assistance available to you. They may be able to refer you to Cancer Council for legal and financial advice.
- Call the National Debt Helpline on 1800 007 007 for free, confidential and independent financial counselling.
- Talk to your superannuation fund about applying for an early release of your superannuation savings on the grounds of severe financial hardship. For more information on accessing your superannuation and the insurance benefits attached to your fund, read the Superannuation and Cancer factsheet.
- Talk to your utility company, loan provider or local council about how they might be able to help you manage payment of your bills or loans.
- See Cancer Council’s booklet Cancer and Your Finances for more detailed information.
Applying for new insurance (life, income protection or travel…
It is a good idea to check exactly what is covered before purchasing a new insurance policy. For more information about insurance, download a copy of the New Insurance policies fact sheet.
Working after treatment ends
Work is an important part of life for many people. Many people need to keep working to provide an income for themselves and their families. Besides income, returning to work can provide satisfaction and a chance to socialise. If you took time off for treatment, you may choose to return to work or find a new job when you have recovered.
If you find yourself asking the questions “Do I have the right to return to my job?” or “What if I can no longer work?”, you can read more about working after treatment ends through Cancer, Work and You, or through Work after Cancer.
Many people find they need support after treatment finishes. The availability of services may vary depending on where you live. Some, but not all, services are provided free of charge.
Education programs for cancer patients and survivors are available in some treatment facilities or community centres.
Cancer Council may offer programs providing information about living well after cancer (e.g. Cancer Voices and Healthy Living After Cancer, Cancer Connect, Support Groups).
Cancer Council offers online webinars and podcasts.
Self-management is an important part of survivorship. With the help of your health care team there are many steps you can take to manage your own wellness.
Last reviewed September 2019
Last reviewed by: 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.