Survivorship

On Cancer: Six Tips for Managing Fear of Cancer Recurrence

Pictured: Karen Hartman Social worker Karen Hartman

A complex and unexpected mix of emotions can accompany the end of cancer treatment. You may feel relieved and elated that it is over but vulnerable and uncertain about what the future holds. For some people, hearing that they are free of disease upon completing treatment may give rise to a significant level of worry and anxiety that the cancer will come back, or recur.

Fear of recurrence is a normal and very common emotional reaction to finishing cancer treatment,” says social worker Karen Hartman. “The reality is that no one can promise the cancer won’t return or spread to another part of the body, but we can work with people so they can gradually move away from that sharp fear.”

Ms. Hartman works with patients and their families at Memorial Sloan Kettering’s Commack location, on Long Island, helping them cope with the emotional and practical effects of cancer through individual and family counseling. Here, she shares a number of tools survivors can use to lessen fear of recurrence and the impact it can have as they adjust to life after treatment ends.

Identify your triggers.

For most people, worries about their cancer returning are often prompted or intensified by certain things. For example, the anniversary of your diagnosis or surgery or news of a celebrity being diagnosed with cancer can stir up feelings of angst and evoke difficult memories of times you may rather forget. The anxiety surrounding follow-up exams and scans can also be overwhelming.

“Physical symptoms such as pain or a lump can be a major trigger because those can be legitimate signs of recurrence,” Ms. Hartman explains. “Usually a headache is just a headache, but for someone who has been through cancer and treatment, it might feel like a brain tumor, and that can bring on anxiety.”

Have a plan.

Ms. Hartman encourages people to make a plan for coping with the triggers they have identified. If you are nervous before a follow-up exam, for example, anticipate how you’re going to get through the day of the appointment, and possibly the days leading up to it. “Plan activities that will distract you from thinking about cancer or write out a list of the things that have helped reduce your anxiety level in the past,” she suggests. “Remember this feeling will pass.”

Talk about it.

Family and friends can be your biggest supporters during your cancer treatment, but they may not realize you’ll still have ongoing concerns after your treatment ends. Let them know that you welcome their continued emotional support and encouragement as you adjust to life beyond active treatment.

Ms. Hartman points out that it also can be comforting and validating to talk to others who have gone through the same things you’ve experienced. Memorial Sloan Kettering offers online and in-person support groups where you can discuss your concerns, as well as a Patient-to-Patient Support Program, which can put you in touch with other cancer survivors to talk about your experiences and share concerns or anxieties you may have.

Participating in an online community such as Connections also offers cancer survivors the opportunity to discuss their fears among peers. “The interesting thing that happens in these support networks is that you not only can receive support, but also can share your own experience and help others, which can be therapeutic,” says Ms. Hartman.

Focus on wellness.

Complementary therapies such as acupuncture, massage, music therapy, and guided meditation can help reduce your anxiety and make you feel more relaxed. Some survivors find comfort in spirituality and prayer.

A healthy diet and physical activity also enhance overall well-being. “Focusing on things like nutrition and exercise not only helps from a wellness and health perspective, but also helps you feel like you’re regaining some control over your life,” says Ms. Hartman.

Memorial Sloan Kettering’s Survivorship Center offers health education programs on topics like sexual health, nutrition, and fatigue management. There are plans to simulcast some of the programs currently offered at the Manhattan campus for those living or working near or receiving treatment at Memorial Sloan Kettering locations in Westchester, Long Island, and Basking Ridge, New Jersey.

Consider counseling.

Social workers, psychologists, and psychiatrists work with survivors to help them accept that fear of recurrence is a normal part of the cancer experience. They can help you develop strategies to cope with your fears and move forward with your life.

If you’re continuing to struggle with worries about your cancer returning, you may find relief in cognitive behavioral therapy (CBT), a form of psychotherapy that has been shown to help reduce anxiety and depression for people with cancer. It combines cognitive therapy — a type of talk therapy that helps identify and change self-destructive thought patterns — with behavioral therapy, which helps people recognize their unhealthy beliefs and behaviors and replace them with positive ones. “CBT is a tool you can use to bring negative or disruptive thoughts back to reality before they spin out of control. It takes practice, but it really works,” Ms. Hartman explains.

“When fear of recurrence becomes unmanageable, an anti-anxiety medication can also be useful,” she adds. “I encourage people to talk with their doctor about whether it’s appropriate for them and when it’s warranted.”

Be patient with yourself.

It helps to know that for most people, fear of recurrence gets better over time. “I can’t say that it goes away altogether,” Ms. Hartman explains, “but as the time between follow-up care appointments increases, it often becomes more tolerable and occurs less frequently.”

Comments

Karen: I just fimished treatment for a reoccurrance after 6 years. I believe we both serve on PWCC board together. Is there a group or seminar you can refer me to?

Dear Candace, we forwarded your inquiry to Karen Hartman, and she responded:

"Memorial Sloan Kettering has a comprehensive support program for cancer survivors. Resources for Life After Cancer offers programs for specific diagnoses as well as for general issues that come up after treatment. You will find the calendar of upcoming programs at www.mskcc.org/calendar. Many of the concerns after treatment for a recurrence mirror those after initial treatment. If you experience different issues you might want to contact the oncology social worker at your treatment facility for individual counseling around those specific concerns."

Thank you for reaching out to us.

I been a "survivor from ovarian" cancer for 3 years now..my follow up visit came up .so.. my colonoscopy follow up t est is comi g up. My ca125 was on 24.,4 from 7.70..how long do i have to wait to really be called a survivor..? Is this stress going away anytime?

Dear Agnes, we forwarded your questions to Memorial Sloan Kettering social worker Karen Hartman and she responded:

"Hi, Agnes,
Congratulations on three years! You have pointed out those triggers that so many survivors (more on that later) say are troubling.

Follow-up scans and tests can bring up all that anxiety (some say "scanxiety") that sounds as though you are able to keep at bay much of the time. We tend to think "oh my gosh, what will it show...?" with worry before the test and then after, awaiting results.

What helps? Well, awareness is the first step, knowing the reasons for feeling anxious. Then it's important to have a plan, some preparation and a strategy for managing the anxious time. Meditation or prayer, if these are helpful to you, can alleviate some of the stress. Support groups can also offer the chance to share your concerns with others who truly understand your fears without telling you that all will be well. That assurance can be well-intentioned but is not usually what we need to hear. And distraction, some kind of activity that you enjoy and that can keep your mind occupied, can really help get through this time.

And for that word "survivor," many organizations, including the American Cancer Society, say that people have the right to define it in their own way. There is not a generally agreed-upon time frame for calling yourself a survivor--in fact the word is generally used to refer to anyone diagnosed with cancer. You've identified another issue that survivors talk about: the meaning of that sometimes-loaded term.

And when will this get easier? Time helps. It really does. For most people this gradually gets easier. As long as follow-up tests are part of your life, though, having a plan for managing them should help."

You may be interested in learning more about managing "scanxiety" here: http://www.mskcc.org/blog/coping-scanxiety-during-and-after-treatment

You may also subscribe to our newsletter for survivors, called "Bridges," here: http://www.mskcc.org/cancer-care/survivorship/newsletter-survivors

Thank you for your comment.

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