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.

Who worries about recurrence?

Fear that the cancer will return is both a normal and common concern for survivors who have completed treatment. The American Cancer Society estimates that at least 70% of cancer survivors experience fear of recurrence.

While fear of recurrence is a concern for many survivors, some survivors are more troubled by 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 fear about the cancer coming back may feel like too much for you to handle.

You might feel especially worried about the cancer coming back if you continue to have symptoms or if you have aftereffects from the treatment. You may also feel at risk because:

• You are no longer actively taking treatments. this may make you feel helpless against a possible recurrence of cancer.
• Your medical condition is not being watched as closely by you health care team during follow-up as it was during active treatment.

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 a fear of recurrence. Understanding what causes the fear and what you can do about it can help.

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 fear of recurrence can also be expressed in some positive ways. For example, fear can motivate you to get information, to seek support, or to schedule a check-up appointment. Fear might inspire new healthy behaviors that could benefit you, such as an exercise routine or healthy eating. However, if fear of recurrence is overwhelming or seriously interfering with your quality of life, a therapist, social worker or other member of your health care team can help.

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

What causes a fear 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 fear of recurrence is usually the strongest can help you prepare to deal with it.

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

Fear of Recurrence: Suggestions

Talk to a health care professional about your risk of recurrence:

Your doctor cannot say exactly what will happen to you. However, based on your particular situation – the type of cancer you had, the treatment you had, how long it has been since you had cancer, and your health history – your doctor can talk with you about how likely – or unlikely - it is that the cancer will come back. Tell your doctor about signs or symptoms that you are worried about. You can also ask for a list of signs and symptoms that you should be watching for. Being armed with information may give you confidence and a sense of control over your fear.

It's not always easy to say everything you want to say during an appointment. You might not be used to having to ask so many questions. It takes practice.

Here are some tips you can use to improve your communication with your health care team:

• Make a list of possible symptoms of recurrence you experienced and take them to your visit. Let the members of your health care team see your list so that all of you can make the most out of the time you have together.
• Ask for a list of signs and symptoms that you should be watching for
• If you have concerns about recurrence in between appointments, give your health care team a call and let them know what they are. If it's not an emergency, you might even fax or mail in your questions and follow-up with a phone call.
• Let your health care team know if you are feeling sad or depressed. They can help you find ways to manage your feelings and suggest other professionals who can help you.

Talk to your friends and family and find out if they have similar fears:

Your friends and family may be afraid to bring up their worries because they don't want to upset you. You might tell them it is actually more helpful for you to talk with them about these fears, and that talking helps you feel less alone.

You can open a conversation by saying, "I worry a lot about my cancer coming back and what might happen if it does," and then sayin:

• I wanted to tell you that because I would like to have your support and help when I am feeling afraid
• I wonder if the fear of my cancer coming back might be bothering you, too
• What things have you thought about that we can do to help cope with this worry?

Together, you may be able to come up with a plan to address your fear of recurrence, knowing that you have the support of your loved ones.

You may find that some of your family or friends are not able to talk to you about this difficult and scary subject. Some conversations might not feel comfortable. Many survivors have friends and family members that are uncomfortable talking about cancer. If that is the case, it is very important to remind yourself of several things:

• You have done nothing wrong by bringing up the subject-the other person may be responding to his or her own experience and fear of cancer
• As painful as it is, it may be that the other person is too upset by the subject to discuss it
• Understand that people may be doing the best they can in the moment
• You may be able to return to the conversation later, when the other person is more able to talk about it

If family and friends are not able to talk with you about your fear, remember that your health care team or a professional therapist can be a vital source of support.  

Talk to a professional therapist if fears of recurrence overwhelm you:

Ask your health care team for a referral to a therapist who works with other cancer survivors. Most cancer centers employ oncology social workers who are specially trained to work with cancer survivors and their families. Even if you are not a patient at a cancer center, the oncology social worker may meet with you or refer you to someone else in the community.

It is important to interview the therapist to find out if he or she is the right professional for you. Speak honestly with the therapist and let him or her know your reasons for wanting to work with a therapist.

Examples of questions to ask the therapist:

• What type of education background do you have?
• What license do you have?
• What is your experience working with people with cancer?
• What do you understand about the emotional response to this illness?
• Do you take my insurance?
• Do you work with people who are anxious? Depressed?
• Do you know community resources for people with cancer?

Find a support group and discuss your fears with other cancer survivors:

Support groups provide a safe environment to share experiences with other survivors, learn new ways to handle difficult situations and talk about the emotions. You will see different styles of coping with stress and adjusting to life as a cancer survivor. If you are uncomfortable talking about certain subjects with your family or friends, a support group offers you a place to talk freely about what is important to you.

Some ways to find out more about support groups in your area:

• Ask your health care team for suggestions. Some cancer programs offer support groups for cancer survivors and their family members right in the clinic or hospital.
• Call a nearby cancer center or university hospital and ask about support groups.
• Call the American Cancer Society at 1-800-ACS-2345 (1-800-227-2345) and request a list of support groups and cancer centers in your area.
• Visit LIVESTRONG SurvivorCare at www.livestrong.org/survivorcare, or call 1-866-235-7205 for information on support groups.