Fear of Recurrence
Fear of recurrence, the concern that cancer will come back after treatment, is common among survivors. 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.
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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 sections for questions to ask and for more resources.
Recurrence of cancer (also called recurrent cancer) is when cancer comes back--usually after treatment is done and a period of weeks or months during which there were no signs or symptoms of the disease. Remission of cancer can be temporary or permanent. If remission is temporary, cancer recurs (relapses) either in the same place where the disease first began (primary site) or in different places in the body (metastases).
Fear of recurrence is the experience of worry and concern that cancer might come back. It affects each survivor differently.
Who worries about a recurrence of cancer?
There is no way to determine who will worry about recurrence and who will not. It doesn't matter how old you are, what type of cancer you had, or how long you have been a survivor. However, understanding the possible causes of fear and what you can do about it may help you feel more secure and better able to manage these types of concerns.
Cancer survivors probably live with more uncertainty about recurrence than people who have had other kinds of illness. This may be because cancer is generally difficult to treat, and there is a chance that it could recur.
Fear that cancer could return is both a normal and common concern for cancer survivors who have completed treatment and are in remission. The American Cancer Society estimates that at least 70% of survivors experience this type of fear. No one wants to get cancer again.
Sometimes, a fear of recurrence results in positive actions. For example, it can motivate you to find new information, seek needed support, or to schedule follow-up health care appointments. Fear of recurrence often inspires new healthy living behaviors such as an exercise routine and healthy eating habits.
When does fear of recurrence become a problem?
Even very calm and level-headed individuals may sometimes feel that the fear of a cancer recurrence is too much to handle. However, this fear should not become so overwhelming that it is difficult to move on with your life.
While the return of cancer is a concern for many, some may be more troubled by it at certain times than others. Many survivors feel unprotected, helpless, and more at risk when active cancer treatment is done. It might be of greater concern to those who have had a type of cancer that was difficult to treat. There may be strong concerns if side effects or aftereffects from the treatment continue long term. In addition, there can be a concern that the medical team is no longer monitoring and watching for cancer as closely as during treatment.
For some, even common physical illnesses such as coughs, colds and viruses can raise strong concerns. The good news is that many aches and pains will most likely not be related to cancer. However, always contact your health care team if you have concerns, feel that something is wrong, or experience symptoms that are new or different.
Some oncologists operate by a “two-week rule.” If any pain or symptom does not go away in two weeks, it should be checked. However, this does not mean that you should wait two weeks to call about concerns. Let your health care team help you understand what you are experiencing.
If a fear of recurrence becomes overwhelming or begins to interfere with your quality of life, a member of your health care team can help. The following are signs that fears about cancer may be a problem:
- Any minor aches, coughs or headaches bring a strong fear that cancer has recurred.
- There is an unwillingness to rebuild and return to a full life due to fears.
- Recurrent is a constant worry.
- Thoughts about cancer recurring happen before you go to bed at night and the first thing in the morning.
- There are long-term sleeping problems (more than a few weeks).
- Little or no appetite continues for days.
- There is no desire to spend time with friends.
- There is no interest in continuing usual routines.
- There is an inability to concentrate at school or work.
Recurrent or metastatic cancer (starts in one part of the body and spreads to a different part of the body) can be treated, but it is sometimes hard to cure. Treatment options for people with recurrent cancer may be different. In some cases, the new treatment method may not have been available at the time of the last treatment. Keeping in mind that you went through treatment once and know that you can do it again may help ease some fears about recurrence.
It is perfectly normal to worry more about recurrence at specific times in your survivorship. Knowing when your fear of recurrence is usually the strongest can help you be prepared to deal with it. You may find that you worry more about cancer recurring when:
- It is time for follow-up health care appointments
- Scans, blood tests or other medical procedures are scheduled
- When you hear or read something about cancer that frightens you
What can be done to deal with the fear of cancer recurrence?
You might find that beginning a conversation about your fears can be helpful for loved ones and friends. Some may be afraid to bring up their worries because they don't want to upset you. However, talking with them may help them, and you are likely to feel less alone. Together, you may be able to come up with a plan to face these fears.
- Talk with your friends and loved ones about your concerns.
- You can start a conversation by saying something such as:
“Sometimes, I worry about my cancer coming back and what might happen if it does…
- 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?”
- Some friends and family members may be uncomfortable talking about cancer. If that is the case, it is very important to remind yourself:
- 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.
- It may be that the other person is does not know how to discuss the subject.
- Although the response is not what you wanted to hear, it may be that this person is doing the best he or she can right now.
- You may be able to return to the conversation at a later time.
Find a cancer support group.
Support groups can provide a safe environment to share experiences with other survivors. You can also learn new ways to handle difficult situations and have a chance to talk about emotional issues that only survivors may understand. These groups can offer an opportunity to learn different styles of coping with fear and ways of adjusting to life as a cancer survivor. If you are not comfortable talking about certain subjects with your family or friends, a support group will offer a place to talk freely about what is important to you. Each support group is unique so you may want to try more than one to find the best one for you.
Talk with a professional therapist if fear of recurrence overwhelms you.
If family and friends are not able to help you with concerns, your health care team or a licensed counselor may be an important source of support. Ask 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.
Keep in mind that, no matter how long it has been since you finished treatment, there may be certain occasions when the fear of cancer recurrence affects you. With time, you are likely to find that your concerns and the level of fear may lessen.
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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Fear of Recurrence: Suggestions
The suggestions that follow are based on the information presented in the Detailed Information document. They are meant to help you take what you learn and apply the information to your own needs. 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 Additional Resources section for links to more resources.
Talk to a health care professional about your risk of recurrence.
- A doctor cannot tell you exactly what will happen to you. However, based on your particular situation (including 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.
Prepare for a discussion with your doctor about the risks of recurrence.
It may not always be 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.
The following are things you can do to prepare for your health care appointment:
- Make a list of signs and symptoms that concern you 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 them to tell you about the signs and symptoms that you should be watching for.
- If you have concerns about recurrence in between appointments, let them know what they are.
- You can email, fax or mail in your questions and follow-up with a phone call to the nurse or doctor.
- Let your health care team know if you are feeling anxious or depressed.
- If needed, ask for a referral to other professionals who can help you.
During times when the fear of recurrence is bothering you, it may be helpful to:
- Talk to a health care professional about your level of risk for recurrence
- Discuss your concerns with loved ones and trusted friends
- Talk to a professional therapist if the fear feels overwhelming
- Join a cancer support group and discuss your concerns with other survivors
Explore ways to learn about cancer support groups in your area such as:
- Ask your health care team for suggestions. Some cancer programs offer support groups for cancer survivors and their family members in the clinic or hospital.
- Call a nearby cancer center or university hospital and ask about support groups.
- Visit LIVESTRONG SurvivorCare at www.livestrong.org/survivorcare , or call 1-866-235-7205 for information on support groups.
- Contact a nonprofit organization to request a list of support groups and cancer centers in your area, such as the American Cancer Society online at www.cancer.org or call 1-800-227-2345.
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Fear of Recurrence: Additional Resources
The previous sections of this document provide detailed information, suggestions, and questions to ask related to this topic. This section offers a listing of additional resources that are known to provide support and quality services that may be helpful to survivors during the cancer journey.
LIVESTRONG SurvivorCare Program
www.livestrong.org/survivorcare
| Email: |
Send email through the LIVESTRONG website. |
| Phone: |
1-866-235-7205
1-866-927-7205 (Spanish) |
| |
Intake Coordinator is available for calls Monday through Friday, 9:00 a.m. to 5:00 p.m. (Central Time). Voicemail is available after hours. |
LIVESTRONG SurvivorCare offers assistance to anyone affected by cancer, including the person diagnosed, loved ones, caregivers and friends. The program provides information about treatment options and matching to clinical trials or treatments in development. Counseling services and assistance with financial, employment and insurance issues are also available. To provide these services, LIVESTRONG SurvivorCare has partnered with several organizations including CancerCare, Patient Advocate Foundation and EmergingMed.
Cancer Hope Network
www.cancerhopenetwork.org
| Email: |
info@cancerhopenetwork.org |
| Phone: |
1-877-HOPE NET (1-877-467-3638) |
| |
This number is answered Monday-Friday, from 8:00 a.m. to 5:30 p.m. (EST). Voicemail is available after hours. |
Cancer Hope Network is a not-for-profit organization that provides free and confidential one-on-one support to cancer patients and their families. They offer support by matching cancer patients or family members with trained volunteers who have already undergone and recovered from a similar cancer experience. You can submit your request by phone or by email. A volunteer will try to contact you within 24 hours.
U.S. Institutes of Health - National Cancer Institute (NCI)
www.cancer.gov
| Online: |
Online assistance is available in English or Spanish through the LiveHelp instant messaging system. This service is available Monday-Friday, 9:00 a.m. to 11:00 p.m.(EST). |
| Email: |
Send an email through the “Need Help?” section of the website |
| Phone: |
1-800-422-6237
TTY for deaf and hard of hearing callers: 1-800-332-8615
Information specialists answer calls Monday-Friday, 9:00 a.m. to 4:30 p.m. local time. |
The National Cancer Institute’s website provides accurate information about the challenges cancer can bring. You can search for information by cancer type or topic. You can find information about treatment, financial and insurance matters. You can also learn how treatments in development work and search for a clinical trial in your area. This site also has a good dictionary of cancer terms, drug information and other publications. Cancer information specialists can answer your questions about cancer and help you with quitting smoking. They can also help you with using this Web site and can tell you about NCI's printed and electronic materials. The knowledgeable and caring specialists have access to comprehensive, accurate information on a range of cancer topics, including the most recent advances in cancer treatment. The service is confidential, and information specialists spend as much time as needed for thorough and personalized responses.
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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?
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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Fear of Recurrence: Suggestions
Talk to a health care professional about your risk of recurrence:
Good communication between you and your health care team helps you get answers to your questions and feel more confident about the care that you receive. 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.
- 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 directly ask them things like:
- Do you worry about my cancer coming back?
- Do you worry more now about your own health?
- Are you afraid that I might die?
You may find that some of your family or friends can talk with you about these difficult and scary subjects. Some conversations might not feel comfortable. Many survivors have friends that are uncomfortable talking about cancer. Try not to be too disappointed in the ones who just can't talk about their fears.
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.
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Fear of Recurrence: Additional Resources
The resources listed below provide more detailed information and support services to help you with fear of recurrence. Please read the Detailed Information and Suggestions document for more information and questions to ask.
Click a resource for more information:
Cancer Hope Network
www.cancerhopenetwork.org
| Email: |
info@cancerhopenetwork.org |
| Phone: |
1-877-HOPE NET (1-877-467-3638) |
| |
This number is answered Monday-Friday, from 8:00 a.m. to 5:30 p.m. (EST). Voicemail is available after hours. |
Cancer Hope Network provides free and confidential one-on-one support for adult survivors and their families. Survivors or family members are matched with a trained volunteer who has gone through and recovered from a similar cancer experience. Volunteers provide emotional support, and they give helpful information about their experiences with managing the physical, emotional and practical challenges of cancer. Whether you submit your request by phone or by email, a volunteer will try to contact you within 24 hours.
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LIVESTRONG SurvivorCare Program
www.livestrong.org/survivorcare
| Email: |
Send email through the Web site. |
| Phone: |
1-866-235-7205 |
| |
Case managers take calls Monday through Friday, 9:00 a.m. to 5:00 p.m. (EST). Voicemail is available after hours. |
LIVESTRONG SurvivorCare offers assistance to all cancer survivors, including the person diagnosed, caregivers, family and friends. The program provides education, information about treatment options and new treatments in development, counseling services and assistance with financial, employment or insurance issues. To provide these services, LIVESTRONG SurvivorCare has partnered with several organizations, including CancerCare, Patient Advocate Foundation and EmergingMed.
The LIVESTRONG Survivorship Notebook is a tool that can help you organize and guide your cancer experience. The portable, three-ring binder contains a variety of information covering a full range of physical, emotional and practical survivorship topics. You may order a free LIVESTRONG Survivorship Notebook at www.livestrong.org/notebook. Shipping and handling charges will apply.
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AMC Cancer Information and Counseling Line
www.uccc.info
| Phone: |
1-800-525-3777 |
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Counselors take calls Monday-Friday, 8:30 a.m. to 5:00 p.m. (MST). |
This counseling line is staffed by trained professional counselors who can talk to you about your concerns. In addition, they provide medical information, resource referrals and emotional support through short-term counseling at no charge. Services are available to survivors, caregivers, family members, or anyone with questions about cancer. This service is operated by the AMC Cancer Research Center, affiliated with the University of Colorado Cancer Center. The Web site has additional information about a variety of cancer topics, as well as links to other cancer sites.
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National Cancer Institute (NCI)
www.cancer.gov
| Email: |
Send an email through the "Need Help?" section of Cancer.gov. |
| Phone: |
1-800-4-CANCER (1-800-422-6237) |
| |
TTY for deaf and hard of hearing callers: 1-800-332-8615 |
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English-speaking and Spanish-speaking information specialists answer calls Monday-Friday, 9:00 a.m. to 4:30 p.m. local time. |
| Online: |
Immediate online assistance is available (in English only) through LiveHelp, an instant messaging system for typing in questions and receiving responses from information specialists. You can access LiveHelp from the "Need Help?" section of the Cancer.gov homepage Monday-Friday, 9:00 a.m. to 11:00 p.m. (EST). |
Cancer.gov, the National Cancer Institute Web site, provides accurate, up-to-date information on many types of cancer and the challenges cancer can bring. You can also use the site to search for information by cancer type or topic, and you can access information about treatment-related issues. Information about financial and insurance matters is also included. You can learn how clinical trials work and search for a clinical trial in your area. This site has a detailed dictionary of cancer terms. Web site information and publications are available in Spanish.
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American Cancer Society
www.cancer.org
| Email: |
Questions can be submitted in English or Spanish from the "Contact Us" page. |
| Phone: |
1-800-ACS-2345 (1-800-227-2345) |
| |
TTY for deaf or hard of hearing callers: 1-866-228-4327 |
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English-speaking information specialists are available 24 hours a day. Spanish-speaking information specialists are available Monday-Friday, 6:30 a.m. to 7:00 p.m. (CST). You can leave a message in English or Spanish 24 hours a day. |
The American Cancer Society Web site contains information about many of the challenges of cancer and survivorship. You can search for information by cancer type or by topic. ACS provides a list of support groups in your area, or you can join online groups and message boards. Some information on the Web site is available in Spanish, Chinese, Korean and Vietnamese. Information specialists can answer questions 24 hours a day by phone or email.
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