Fear of Recurrence: Detailed Information

Recurrence is when the cancer comes back after it has been treated. 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. You may worry about a recurrence of your cancer often. You may only think about it 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 fears of recurrence. No one wants to get cancer again. Living with some fears of recurrence, especially when you go back in for check-ups, is a common experience for many cancer survivors. However, fears of recurrence may get so overwhelming that they make it difficult to move on with your life and adjust to life after cancer. If you have fears of recurrence, it is possible to manage them either by yourself or with the help of a professional counselor.

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