Physical changes - long-term and late effects - cancer survivorship - ACSC

Long-term and late effects will vary depending on the type and stage of your cancer as well as the type of treatment you had. But all the common cancer treatments (chemotherapy, radiotherapy, surgery and hormone therapy) can cause both long-term and late effects.

Not everyone who has cancer treatment will suffer from long-term or late effects. Even people who had the same type of treatment won’t always suffer the same side effects. For example, not all chemotherapy drugs cause the same ongoing or late effects.

Children who have had cancer may be at risk of developing late effects as they grow older. See 'useful inks and resources' to find out more about support for people in this situation.

Possible long-term side effects

Long-term side effects are those that happen during or soon after treatment finishes. In time many long-term side effects will become less severe or disappear completely. They may include:
  • feeling very tired (fatigued)
  • pain
  • loss of self-esteem and confidence
  • changes in the way you look (e.g. scars, an ‘ostomy’ bag, loss of hair or a body part)
  • problems with anxiety, depression and mood swings
  • changes in the way your bladder and bowel work (e.g. incontinence, constipation, diarrhoea)
  • menopausal symptoms (e.g. hot flushes, night sweats, weight gain, mood swings)
  • problems with eating, drinking and weight
  • mouth and teeth problems
  • thinning of the bones (osteoporosis)
  • fertility problems
  • persistent swelling in the limbs (lymphoedema)
  • changes in sex life
  • nerve damage which is sometimes caused by chemotherapy, which can lead to pain, tingling and numbness, usually in the hands and feet (neuropathy)
  • changes in memory and concentration sometimes affecting people who have been treated with chemotherapy ('chemobrain’ or ‘chemo fog’)
  • heart, liver and lung problems.

Possible Late effects

These can happen years after treatment finishes. They can include:
  • lung, heart and liver problems
  • developing another type of cancer
  • clouding of the lens in the eye, which can cause difficulty with vision (cataracts)
  • infertility
  • bowel problems
  • thyroid problems (the thyroid is a gland in the neck that makes some types of hormones)
  • tooth decay
  • changes in bone density (osteoporosis)
  • persistent swelling in the limbs (lymphoedema)
  • memory problems.

Getting help and support

Any change in how your body looks, feels or functions can be very hard to deal with. Certain side effects may be annoying but manageable (e.g. numbness in the hands and feet). However, others can be more severe and have a big effect on your quality of life (e.g. infertility, changes to your sexual life or developing another type of cancer).

There are things that can be done to help control or treat many long-term and late effects from cancer treatment. It is important you find the right support to help you manage and cope with any side effects you have or may develop.

The following tips may help:

  • After finishing treatment, it is helpful to have a survivorship care plan: a written record with details of the cancer diagnosis, treatments and an ongoing plan of care. This will provide both you and any other health professionals you may need to see with a good knowledge of your cancer, the treatment you have received, what to expect following treatment and what you can do to look after yourself. Speak with your treatment team about providing you with a survivorship care plan.
  • Keep your follow-up appointments. Tell your doctor about any symptoms you have. It is always best to have them checked rather than worry. If you no longer have follow-up appointments, be sure to report any symptoms to your GP or get a referral back to your cancer specialist.
  • Ask your doctor for help with any ongoing side effects you may have. Don’t let them go on too long before asking for help. You may need a referral to other health professionals such as a dietitian, specialist nurse or counsellor.
  • Talk to your doctor about whether or not you are at risk of developing late effects from your treatment. In some cases they may be able to alert you to the signs and symptoms of late effects. But this won’t be the case with everyone.
  • Be healthy. While we are still uncertain whether or not we can prevent late effects from cancer treatment, it may still help to stay as healthy as you can.
  • Look after yourself. This means taking care of your mind and body. Try to eat a well-balanced diet with lots of fresh fruit and vegetables, exercise regularly and get plenty of sleep. Lack of sleep, a poor diet, alcohol and recreational drugs can worsen fears and anxiety. But remember to treat yourself every now and then. 'Everything in moderation' is a good motto. We don't want life to become to boring!
  • Limit alcohol. Drinking alcohol increases the risk of some cancers. If you do drink alcohol, it is recommended you drink no more that two standard drinks a day. You should avoid binge (excessive drinking in one session) and have one or two alchohol-free days per week.
  • Quitting smoking. If you smoke, quitting is particularly important as it can reduce the chance of developing a new cancer, improve appetite and overall health. If you need help quitting, speak with your GP, or call the Quitline. Quitline is a telephone information and advice or counselling service for people who want to quit smoking. You can call the Quitline on 131 848 confidentially from anywhere is Australia for the cost of a local call only.
  • Be physically active. Exercise is regarded as beneficial for people with cancer both during and following cancer treatment. Exercise is also important to reduce the risk of many cancers. 'Moderate-intensity' exercise is recommended for people who are undergoing cancer treatment or who are in the recovery phase. 'Moderate- intensity' refers to the level of effort required by you to experience a change in your heart rate and breathing. Brisk walking, swimming and cycling are especially recommended.
  • Be SunSmart. The sun's ultraviolet (UV) radiation is a major cause of skin cancer. It is important to wear a factor 30 sunscreen, wear sensible protective clothing, wear a hat and limit your time in the sun. It is about taking a balanced approach to UV exposure to help with Vitamin D levels whilst minimizing the risk of skin cancer with appropriate sun protection methods.
  • Read Useful questions to consider asking your health care team.

Useful links and resources

  • Cancer Council (13 11 20) booklets include Life after cancer. A guide for cancer survivorsCall the Cancer Council to find out about Life after Cancer forums. Through the Cancer Council Helpline (13 11 20) you can speak with a cancer nurse; ask about Family Cancer Connect and support groups and other support services that may help you. Cancer Connect is a free phone peer support service that puts you in touch with others who've had a similar cancer experience.
  • Call the Cancer Helpline on 13 11 20. You can speak with a cancer nurse: ask about Family Cancer Connect and support groups and other support services that may help you. Cancer Connect is a free phone peer support service that puts people in touch with others who've had a similar cancer experience.

If you had cancer as a child and need further information about possible late effects from your treatment:

  • Canteen (1800 226 833) provides support for young people aged 12 to 24 who are living with cancer.
  • The Childrens Cancer Centre (03 9345 4855) is at the Royal Children's Hospital, Melbourne.
  • The Peter Mac Late Effects Clinic (03 9656 1111) has a team of health professional who provide personalised care and information.
  • Redkite (1300 722 644) provides emotions support to children and young people (up to the age of 24)and their families through the difficult cancer experience.

All of these services may be accessed through their websites.

Proudly supported by
  • Pratt Foundation
  • State Government of Victoria - Department of Health