Fear of the cancer coming back

Wednesday 1 April, 2015

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On this page: Ways to manage the fear of recurrence | Will the cancer come back? | Survival statistics | Fear of getting a different cancer | Checking for signs of a new cancer | Key points

Feeling anxious or frightened about the cancer coming back (recurrence) is one of the most common challenges and greatest concerns for cancer survivors. Most cancer survivors are likely to experience this fear to some degree.

This fear 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.

Many people find that their worry is worse at certain times, such as:

  • special occasions (e.g. birthdays or holidays)
  • anniversaries (e.g. the date you were diagnosed, had surgery or finished treatment)
  • before follow-up appointments
  • hearing of others diagnosed with cancer
  • experiencing 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 related fundraising campaigns or advertisements (e.g. a graphic cigarette or melanoma warning).
"The fear is always there. It never goes away completely." — Maria

Ways to manage the fear of recurrence

  • A number of psychological interventions specifically address the fear of cancer recurrence and have been shown to be effective. Ask your GP for more information or call Cancer Council 13 11 20.
  • Learn to recognise and manage the signs of stress and anxiety, such as a racing heartbeat or sleeplessness.
  • Mindfulness, meditation and yoga have been found to help in managing this fear.
  • Talk to your specialist about your risk of recurrence and educate yourself about your type of cancer.
  • Focus on what you can control, e.g. being actively involved in your follow-up appointments and making changes to your lifestyle.
  • Social support is important and has been found to play a protective role in the fear of recurrence.
  • Joining a support group may help.
  • Not all symptoms are a sign of cancer, they may indicate other health problems e.g. diabetes, arthritis, high blood pressure etc.
  • See you doctor if you notice any new symptoms, or symptoms that have returned. Don’t wait for your next check-up.

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 survive. The risk of cancer coming back (recurrence) is different for each person and depends on many factors including cancer type and stage, genetics, type of treatment and time since treatment. Talk to your doctor about your risk of recurrence. Generally, the likelihood of cancer recurring decreases over time.

Cancer is most likely to recur in the first five years after treatment ends. Risk of recurrence depends on the type and stage of cancer, type of treatment and time since treatment. 

See information on how to take control of your health and reduce your risk of cancer recurrence.

Survival statistics

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 use the term ‘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.

These statistics are usually adjusted to account for other causes of death in the general population (called ‘relative survival rates’), and thus refer to the percentage of people who would have survived if cancer was the only cause of death. For example, it is estimated that 10 out of every 100 people diagnosed with breast cancer will die from the disease within five years. Another way of saying this is that the relative survival from breast cancer is 90%. Many of these people live much longer than five years after diagnosis. 

How accurate are the statistics?

Five-year cancer survival rates are only a guide. They include everyone with a particular type of cancer, at all stages and grades of the disease. However, people diagnosed with early stage disease (small cancer that has not spread) are likely to have a much better outlook than people diagnosed with late stage/advanced disease (larger cancer that may have spread).

Statistics take many years to calculate and are usually slightly out of date. For example, if you were diagnosed with cancer in 2014, the doctor may use survival rates for people diagnosed in 2007 (followed for five years until 2012). With cancer treatments improving all the time, your outcome (prognosis) is likely to be better than it would have been in 2007.

Asking your doctor how your risk has changed at your check-ups can be a good way of learning what the latest statistics are, or how much your risk has reduced since your treatment finished. 

"Survival keeps on going; every day brings a new challenge. I think it’s been both a curse and blessing." — Neil

Fear of getting a different cancer

Some survivors worry about developing a different type of cancer. While this is not common, approximately 10% of cancer survivors will develop a second primary (new) cancer.

See 'ways to manage the fear of recurrence' above for useful tips that may also assist with the fear of developing a different cancer. 

The following factors may increase your risk of developing another type of cancer:

  • being born with an inherited gene that increases your tendency to develop cancer (accounts for 5–10% of all cancers)
  • exposure to cigarette smoke or other cancer-causing agents
  • skin damage caused from overexposure to the sun’s UV rays
  • ageing
  • undergoing some forms of cancer treatment, particularly as a child.

Talk to your doctor if you are concerned about your risk factors. 

"It helps to focus on what is happening now, what is actually known – not all the possiblities. One step at a time." — Jane

Checking for 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 doctor 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 (e.g. diarrhoea or constipation for more than six weeks)
  • urinary problems or changes
  • unusual changes in your testicles (for men) or breasts (for women)
  • persistent abdominal pain or bloating
  • abnormal bleeding
  • unexplained weight loss
  • unexplained fatigue. 

To help detect cancer early, national screening programs are available for breast (women aged 50–69), cervical (women aged 18–70) and bowel (men and women aged over 50) cancers. For more information, talk to your doctor, call Cancer Council 13 11 20 or visit www.cancerscreening.gov.au.

"Having cancer has meant I’ve learn a lot more about my body and about life than a lot of people ever learn." — Petronella

Key points

  • Many cancer survivors worry that the cancer will come back.
  • This concern may be worse at certain times such as special occasions, followup appointments, and hearing about other people diagnosed with cancer.
  • Many find the fear of recurrence lessens with time. However, this is not always the case.
  • To help detect cancer early, people of certain ages can take part in free national screening programs for the early detection of bowel, breast and cervical cancers.
  • You can reduce your cancer risk through healthy lifestyle choices such as quitting smoking, eating healthily, limiting or avoiding alcohol, staying SunSmart every day and taking time to be active.
  • The risk of recurrence depends on cancer type and stage, type of treatment and time since treatment.
  • Doctors use five-year survival statistics to refer to the number of people who are alive five years after diagnosis.
  • Most people who get cancer only get one type. However, approximately 10% of cancer survivors will develop another type of cancer.
  • If you notice new or concerning symptoms, make an appointment with your doctor. 

Reviewed by: A/Prof Jane Turner, Department of Psychiatry, University of Queensland; Polly Baldwin, Cancer Council Nurse, Cancer Council South Australia; Ben Bravery, Cancer Survivor, NSW; Helen Breen, Oncology Social Worker, Shoalhaven Cancer Services, NSW; A/Prof Michael Jefford, Consultant Medical Oncologist, Peter MacCallum Cancer Centre and Clinical Director, Australian Cancer Survivorship Centre; David Larkin, Clinical Cancer Research Nurse, Canberra Region Cancer Centre; Miranda Park, Clinical Nurse Specialist, Cancer Information and Support Service, Cancer Council Victoria; Merran Williams, Nurse, Bloomhill Integrated Cancer Care, QLD; Iwa Yeung, Physiotherapist, Princess Alexandra Hospital, QLD; Danny Youlden, Biostatistician, Viertel Cancer Research Centre, Cancer Council Queensland.

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