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Fear of cancer returning

Friday 29 January, 2010
Reviewed: A/P Michael Jefford MBBS, MPH, MHlthsevMt, PhD, MRACMA, FRACP, Consultant Medical Oncologist, Peter Mac; Dr. Carrie Lethborg, MSW, PhD, St. Vincent's Hospital

On this page: What symptoms should I watch out for? | How likely is it that my cancer will come back? | Survival statistics | Why do doctors use 5-year and 10-year survival rates? | How accurate are the statistics? | Fear of getting a different cancer | How can I check myself for signs of a new cancer?

Many cancer survivors feel anxious and frightened about the cancer coming back, especially in the first year after treatment.

For some people the fear is so strong that day-to-day life is a big struggle. They don't find any joy in life or believe that they ever will again. Living with this fear has been described as a ‘shadow': no matter which way you turn, it's always there.

‘The fear is always there. It never goes away completely.' (Maria)

Many survivors say that with time their fears lessen. But they also say that no matter how much time passes, it's hard not to be reminded at certain times such as:

special occasions: birthdays, Christmas and anniversaries
the date you were first diagnosed and when your cancer treatment finished
just before and during check-ups
if you hear about anyone else getting cancer
having symptoms that are similar to those you had when you were first diagnosed with cancer
if someone you know dies from cancer or any other type of illness
passing by the hospital where you had your treatment or having to visit someone you know in the same hospital
reading or hearing about cancer in the media, new treatments or celebrities with cancer.

‘Cancer will always leave a scar. The scars are internal, they're emotional, they're intellectual, and they're physical. The physical scars are probably the least of the worries, but it's the emotional scars that people go through in terms of their journey.' (Neil)

What symptoms should I watch out for?

Your cancer doctor is the best person to speak with about what symptoms you should look out for and report. Doctors will also be able to give you some idea about the risk of your cancer coming back. This is only if you want to know. Not everyone is ready to hear these answers as soon as their treatment finishes. You don't ever need to ask if you don't want to. Do what feels right for you.

At first you may think that every ache, pain, runny nose or feeling of sickness means your cancer has come back. You may worry so much that you find yourself at your GP's office more than usual. Try to remember that every symptom doesn't mean that your cancer has come back. Most survivors say that over time, their confidence builds up and they don't think as much about their cancer coming back.

If you do have a symptom, try not to worry too much. If the symptom doesn't go away within a week, make an appointment to see your GP or specialist. They will be able to reassure you and decide whether or not you need to have any further tests.

Remember: a lot of symptoms won't have anything to do with your cancer. You may just have a headache, stomach upset or feel tired and run down from the past few months of your treatment.

How likely is it that my cancer will come back?

You may also wonder how likely it is that your cancer will come back, or how long most people who have had your type of cancer live for.

Your cancer doctor is the best person to talk with about your case. But they still won't be able to tell you for sure what will happen. You may find this hard to accept and want someone to be able to give you definite answers. This is natural.

How well your body deals with your cancer and its treatment won't be the same for everyone. We are all unique: for example, the same type of cancer can grow at different rates in different people.

Your doctor will be able to give you some answers based on research and from their experience with other patients, but there's always going to be some uncertainty. Try not to let it get you down. Many cancer survivors say that with time, you'll find your own way of coping with the chance of cancer coming back.

Survival statistics

You may hear your doctor talk about ‘5-year' or ‘10-year' survival figures for your type of cancer. These statistics can seem confusing and concerning.

‘Five-year survival' and ‘10-year survival' refers to the percentage of people who are living 5 or 10 years after their diagnosis with a certain type of cancer. For example, about 83% of men diagnosed with prostate cancer will be alive 5 years after they're diagnosed. This doesn't mean that all these men are cured, and it also does not mean that men live for only five years after prostate cancer treatment.

Some patients may be cured but for others their cancer will come back (recur) in this 5-year period. They may have another lot of treatment and live for many more years. For some patients the cancer will come back after the 5 years.

Generally, the more time that goes by, the less likely it is that your cancer will recur. For example, you have a much lower chance of your cancer coming back after 5 years than you in the first two years. And the more years that you go on without your cancer coming back, the higher your chance of complete cure is.

Why do doctors use 5-year and 10-year survival rates?

Depending on the type of cancer, there may be only a small chance that it will come back after 5 or 10 years. But most doctors are wary of saying that you're ‘cured' because they know that there is still a small chance that the cancer may come back. So instead they use the terms '5-year survival' and ‘10-year survival'.

Most of the research studies that follow patients up after their cancer treatment go for 5 or 10 years, so these are the statistics your doctor will use and may quote to you.

How accurate are the statistics?

Five-year and 10-year cancer survival rates are general. They often include everyone with that type of cancer at all stages of the disease. People treated effectively at an early stage can usually count on their survival being better than the average 5-year or 10-year rate, while people treated while their cancer is at a later stage may have a slightly poorer outlook.

Remember: no statistics can tell you exactly what will happen to you. You and your cancer are unique.

Statistics take many years to collect and therefore are often slightly out of date. For example, if you have cancer diagnosed in 2010, the five-year survival rate may be from people diagnosed in 2004. With cancer treatments improving rapidly, your outcome may be better than it would have been if your cancer was diagnosed in 2004.

Statistics such as five-year survival rates are likely to improve for many types of cancers in the next 20 years.

Feel free to ask your doctor about the five-year survival rates for your type of cancer. Not everyone wants to know or feels ready to find out straight after finishing their treatment. For some people it is only something else to worry about. So only ask if it is something you will feel okay knowing. You may want to wait a few months before asking or you may never want to ask. What feels right for you is right.

Fear of getting a different cancer

As well as worrying about your cancer coming back, you may also worry about getting a different cancer.

Most people who get cancer only get one primary type. It's quite rare to develop another, different cancer. But, like most things in life, it is possible. Your risk may be higher if:

You were born with genes that increase your risk of cancer-this is rare and affects less than one in 20 (5%) people.
You have been exposed to cancer-causing agents such as tobacco smoke.
Your prior cancer treatment has increased your risk. For example, radiotherapy can sometimes increase your risk of getting a different cancer later in life. This is especially true if you had treatment for cancer in childhood.

If you are worried about getting a different type of cancer, talk to your doctor. They should be able to tell you about your own risk, if you have any.

How can I check myself for signs of a new cancer?

Find out about the national screening programs for breast cancer screening, cervical cancer screening and bowel cancer screening. These regular checks are good health habits.

If you are at high risk of some cancers, your doctor or specialist will be able to advise whether you need screening or regular tests or checks. See our cancer screening section or talk to a cancer nurse at the Cancer Council Helpline on 13 11 20.

While it is important to be ‘body aware' and keep a check on any symptoms you may have, it helps not to worry too much either. For example, you may wish to get into the habit of checking your skin, breasts or testicles every month for any changes. But aim to strike that healthy balance of checking yourself regularly and not worrying too much in between.

Below is a checklist of possible signs of cancer. You should contact your doctor if you have: