Fear of Recurrence: Detailed Information

This information is meant to be a general introduction to this topic. The purpose is to provide a starting point for you to become more informed about important matters that may be affecting your life as a survivor and to provide ideas about steps you can take to learn more. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Suggestions and Additional Resources documents for questions to ask and for more resources.

What is recurrence?

Recurrence is cancer that has come back after it has been treated and there was no cancer detected in your body. A recurrence can happen in the same place where the cancer first began or it can come back in a different part of the body.

Fear of recurrence, the concern that cancer will come back after treatment, is common among survivors. You may only worry about recurrence when you go in for check-ups, or maybe you don't worry about recurrence at all. Fear of recurrence is something that affects survivors differently.

It's perfectly understandable if you have a fear of recurrence. No one wants to get cancer again. Living with a fear of recurrence, especially when you go back in for check-ups, is a common experience for many cancer survivors. However, a fear of recurrence may get so overwhelming that it becomes difficult to move on with your life and adjust to life after cancer. Although having some concerns about recurrence is natural, too much worrying can affect your quality of life. Understanding how to manage fear of recurrence can help you feel more confident and secure about survivorship.

Who worries about recurrence?

While recurrence is a concern for many survivors, some survivors are more afraid of it than others. You might think about recurrence more if you had a kind of cancer that was difficult to treat. You may be someone who is usually very calm and level headed when it comes to other things, but fears about the cancer coming back may be too much for you to handle.

There is no way to determine who will worry about recurrence and who will not. It doesn't matter how old you are, what cancer type you had, or how long you have been a survivor - anyone can experience fears of recurrence. That's why survivors may want to think about whether they have fears of recurrence and whether they need professional help to manage those fears.

What are signs that a survivor may have fears of recurrence?

Below are some symptoms that you might experience if you worry about recurrence:

You think you might have cancer again when you have any aches, lingering coughs or headaches
You notice the normal minor aches and pains in your body that never bothered you before cancer
You are afraid to rebuild your life because you are too scared you might get cancer again

Don't forget that even though you had cancer, it's still possible for you to get common physical illnesses like a cough, cold or a common ache. Many aches and pains in your body are not related to cancer. But anytime you have concerns about your health, you should talk to your health care team.

Many oncologists operate by the two week rule: any pain or symptom that goes away in less than two weeks is not usually something to worry about. This does not mean that you have to wait two weeks to call your health care team when you have concerns about your health. Let your health care team help you understand what you are experiencing.

A therapist, social worker or other member of your health care team can help you learn how to better manage your fears of recurrence. It's OK to live with some fears of recurrence and not seek professional help; however, any fears that are overwhelming and seriously interfering with your quality of life should be discussed with a professional counselor.

You might want professional counseling if:

You constantly worry about recurrence
You think about your cancer recurring before you go to bed at night and the first thing in the morning
You go for more than a few weeks without sleeping well
You don't feel hungry for days
You don't want to spend time with your friends or continue your usual routines
You can't concentrate at school or work

Why do some cancer survivors have fears of recurrence?

Cancer survivors probably live with more uncertainty about recurrence than people who have had other kinds of illness. Because cancer is such a difficult illness to treat, there is a chance that it might come back again. It's possible to treat recurrent or metastatic cancer, cancer that recurs in a different part of the body, but it's sometimes hard to cure recurrent cancer. If the cancer comes back again, you might worry that your cancer can't be cured. Remember that there are treatment options for people with recurrent cancer. There may be different treatment options that weren't available when you were treated last time. If a recurrence does happen, it is very important to maintain an honest and hopeful dialogue with your health care team to ensure the best medical care possible.

In addition to fearing a recurrence that may be fatal, cancer survivors may worry about having to endure more treatment. Going through surgery, chemotherapy and radiation once is bad enough; thinking about going through it again may seem impossible. It might help if you try to maintain a positive attitude. Realizing that you survived treatment once and believing that you could endure it again may help ease your fears of recurrence.

When might fears of recurrence affect a survivor?

You may always live with some fears of recurrence. You may notice that over time, your fears of recurrence have decreased and you don't think about the cancer coming back as much. Some survivors find that their fears of recurrence go away as time passes. No matter how long it has been since you finished treatment, there may be certain moments during your survivorship when fears of recurrence affect you.

You may find that you worry more about cancer recurring:

When you are due for check-up appointments
When you have scans, blood tests or other medical procedures
When you hear or read something about cancer that frightens you

It's perfectly normal to worry more about recurrence during these moments in your survivorship. These can be very scary experiences. Knowing when your fears of recurrence are usually the strongest can help you prepare to deal with them.

What can a survivor do to manage fears of recurrence?

Below is a brief list. For more information, see Suggestions.

Talk to a health care professional about your risk of recurrence
Talk to your friends and family to find out if they have similar fears
Talk to a professional therapist if fears of recurrence overwhelm you
Find a support group and discuss your fears with other cancer survivors

This document was produced in collaboration with:
Hester Hill Schnipper, LICSW
Chief, Oncology Social Work
Beth Israel Deaconess Medical Center, Boston

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