Fear of the cancer coming back

Feeling anxious and frightened about the cancer coming back (recurrence) is the most common fear for cancer survivors, especially in the first year after treatment.

For some people, this fear may affect their ability to enjoy life and make plans for the future. Living with this fear has been described as a shadow on your life.

Some survivors say that with time their fears lessen. However, many people still find that they worry 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 from cancer or another type of illness
  • 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 warning or melanoma warning).

 Ways to manage the fear of recurrence

  • Talk to a medical professional about your risk of recurrence.
  • Focus on what you can control, e.g. being involved in your follow-up appointments and making changes to your lifestyle.
  • Recognise the signs of stress, such as a racing heartbeat or sleeplessness, and try to manage this in a healthy way. For example, doing some meditation or light exercise might help.
  • Join a support group to discuss your concerns with other cancer survivors.
  • Speak to a counsellor if the fear of recurrence is overwhelming or if it is affecting your relationships. The counsellor may be able to help you balance your thinking or have a more positive frame of mind.

Will the cancer come back?

You may wonder how likely it is that the cancer will come back or how long people with your type of cancer live. You need to discuss your case with your doctor, who can give you an idea of what may happen to you or tell you the most recent survival statistics. This is a general guide and there is always some uncertainty, which can be frustrating.

The risk of recurrence is different for each person. It depends on many factors including the type of cancer, stage at diagnosis, treatment and time since treatment. Generally, the more time that goes by, the less likely it is that the cancer will come back.

How does cancer come back?

  • Local recurrence – appears at or near its original site (this may be known as a relapse)
  • Secondary cancer – spreads (metastasises) to other parts of the body.  

Survival statistics

Many doctors are wary of using the term “˜cure’ as undetected cancer cells can sometimes remain in the body after treatment, causing the cancer to return. Instead they may use the term “˜five-year survival rate’.

This is because research studies often follow people for five years, and this data is often used to predict a patient’s risk of relapse.

Five-year survival rate means the percentage of people alive five years after diagnosis. For example, about 94 out of every 100 people (94%) diagnosed with thyroid 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 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) may have a better outlook than people diagnosed with late stage 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 2011, the doctor may use survival rates from 2007. With cancer treatments improving all the time, your outcome (prognosis) may be better than it would have been in 2007.

Most cancers are more likely to come back in the first few years after treatment ends, but it is also possible for some to recur many years later.

Fear of getting a different cancer

Some survivors worry about developing a different cancer. Most people who get cancer only get one type. It is uncommon to develop another type of cancer. Your risk may be higher if:

  • you were born with genes that increase your tendency to develop cancer – this affects fewer than five out of every 100 people (<5%)
  • you have previously been exposed to smoke or other cancer causing agents
  • you have not used sun protection or have been exposed to the sun regularly
  • your cancer treatment has increased your risk. For example, some forms of radiotherapy can increase the risk of getting a different cancer later in life, particularly if you were treated as a child.

If you are concerned about getting a different type of cancer, talk to your doctor about your risk.

Checking for signs of a new cancer

If you notice anything unusual or have any concerns, see your doctor as soon as possible.

Signs to look out for include:

  • a lump anywhere in your body that doesn’t go away
  • a mole or skin spot that changes shape, size or colour
  • a cough or hoarseness that won’t go away
  • changes in bowel habits (e.g. diarrhoea or constipation for more than six weeks)
  • abnormal bleeding
  • unexplained weight loss
  • unexplained fatigue.

To help detect cancer early, you can participate in national screening programs for breast, cervical and bowel cancer. For more information visit www.cancerscreening.gov.au.

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