What if It Comes Back? Dealing With Fear of Recurrence

Insight Articles
March 17, 2017
By: 
Eric Fitzsimmons, Copy Editor and Content Coordinator

Beth Satter, 53, of New York City, was diagnosed with stage IA breast cancerinfo-icon in 2014. She got a mastectomyinfo-icon and now returns for a check-up and screeninginfo-icon twice a year for signs of a recurrenceinfo-icon, what doctors call breast cancer returning to the same spot or traveling to other organs in the body. For Beth, like for many people, these appointments are a reminder of her time in treatment and the possibility of cancer coming back.

“Every time I get ready for … my 6-month oncologyinfo-icon appointment, I’m really not a very happy person,” Beth says. “It’s not as if they’re going to tell me anything [that day], but it’s just that it’s in my face how unknown the future is.”

Everyone who has been diagnosed with breast cancer faces the fear of recurrence. For many it is an ongoing concern, and for some it can interfere with enjoying daily life. It is a normal reaction to having had cancer and knowing it may return. Beth has been out of treatment for over 2 years but the idea that breast cancer may return is still present.

“There’s not many days that go by that [cancer] doesn’t cross my mind, that I don’t have to find ways to push it out of my mind and distract myself, because it can be really overwhelming,” Beth says.

Though worries about recurrence may never go away entirely, you can find ways to face those fears and enjoy your life despite them.

A Challenge Like No Other

Cancer, as Gregory Garber, MSW, LCSW, points out, is not like other challenges in life. Mr. Garber is the director of oncology support services at Thomas Jefferson University’s Sidney Kimmel Cancer Center, in Philadelphia.

“No one is born knowing how to copeinfo-icon with cancer. It’s something we learn,” Mr. Garber says. “It’s a very specific disease, or set of diseases, and requires some specific coping strategies.”

For some, this may mean speaking with a clinicalinfo-icon social workerinfo-icon or other mental healthinfo-icon professional. But many can get by with a bit of guidance and the help of friends and family.

No one is born knowing how to cope with cancer. It’s something we learn. It’s a very specific set of diseases, and requires some specific coping strategies.

Cookie Woodside, of Lancaster, Ohio, was first diagnosed with cancer in 1995. In 2008 she was diagnosed with a new cancer in her other breast, which then returned in the same place in 2013. As time went by after her first diagnosisinfo-icon, she worried less and less about cancer coming back. Mr. Garber says this is common. After nearly 13 years without cancer, Cookie nearly skipped the 2008 screening that found a second breast cancer.

She has leaned on her faith and her family, and when she needs strength, Cookie repeats the Serenity Prayer: “God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.”

When she is alone in the car and feels sad, she turns up the volume to sing along with the Melissa Etheridge song, “I Run for Life.”

‘How Do You Want to Spend Your Time?’

Linda Abrams, PhD, a psychologistinfo-icon in private practice in Fort Washington, Pennsylvania, says living in the moment is important when dealing with fears of recurrence. Dr. Abrams, who herself has had breast cancer, specializes in speaking with people and families coping with cancer. She talks to people who have let the uncertainty of what might happen keep them from making plans in coming months or years. This can keep them from experiences they may enjoy.

People often want to tell you “everything will be fine,” she says, but it may be more helpful to have people around who say “nobody knows what will happen in a year, but if we want to plan to see this Broadway play or go on this vacation, then let’s do it.

“[It’s] deciding ‘how do you want to spend your time?’” Dr. Abrams says.

Instead of dwelling on cancer, do things you enjoy, like taking walks, visiting family or watching a funny movie. Dr. Abrams says it’s OK to do things that just make you happy.

Dr. Abrams also recommends finding areas of your life where you have some control. You cannot control whether cancer comes back, but you can lower the risk or improve your overall health through things like healthy eating and exercising.

Josephine Rizo, from Phoenix, Arizona, was diagnosed with stage III breast cancerinfo-icon in May 2016. Josephine is 37 years old and has three children at home. She was helping care for her mother, who was getting chemotherapyinfo-icon for a breast cancer recurrence, when she received her own diagnosis.

“I feel like I have so much time ahead of me,” Josephine says, “I know I’m going to have to go [for screenings] often and I just think it’s worrisome because I would hate to find another lump.”

To keep from dwelling on the breast cancer, Josephine exercises, including walks to get out of the house. She listens to music more now and spends more time with her family.

Getting Professional Help

If you find your worries getting in the way of your work or home life, it might be time to speak with a psychologist, social worker or other professional, Dr. Abrams says. Trying to be healthier is a great thing, she says, but if you worry about having a glass of wine or missing a single workout, it might be a sign of more serious anxieties.

According to Mr. Garber, “the questions one should ask [are]: Does my distressinfo-icon impact my functioning? Am I not doing the things I need to do? Am I not performing well at work or school or home? Am I feeling blue every day? Am I not getting enjoyment out of previously enjoyable things?”

What resources are available depends greatly on where you live, but your oncologistinfo-icon may be a good starting point. Because oncologists deal directly with people who have cancer, they have likely talked to others about emotional concerns, Mr. Garber says. They can point you to mental health professionals and other resources in your area.

People need to use reputable, evidence-based sources, which typically have a ‘.edu’ or ‘.org’ connected to them. And I think the best source of information needs to be one’s oncologist.

Too Much Information

Anyone who has been on the internet understands both the great promise and the many risks that come along with getting information online. Some find it helpful to learn all they can about the disease and try to understand better what their doctors are telling them at appointments. People also use the internet to find community through online support groups.

Beth participated in online support groups, but found they were not the outlet she needed to deal with her worries.

“I would read so many tragic stories in the course of the day. It just brought me down emotionally so much that I had to turn away from that kind of negativity,” she says.

Mr. Garber cautions people interested in joining support groups that it can be easy in these spaces to start comparing diagnoses and forgetting that each person and breast cancer is different. He recommends looking around. A support groupinfo-icon led by a mental health professional may be better than a more informal one. Consider groups that accept people with any kind of cancer. There, you’ll have less in common medically and you can focus on the emotions.

A similar degree of care should be applied to the internet. It is a good place to get background information on breast cancer, Mr. Garber says, but use discretion in how much you look at and where you get your information.

“People need to use reputable, evidence-based sources, which typically have a ‘.edu’ or ‘.org’ connected to them,” Mr. Garber says, “and I think the best source of information needs to be one’s oncologist.”

The fear of the recurrence doesn’t immobilize me. It motivates me to not lay around, because I don’t know what the future is going to bring. 

A ‘New Normal’

With some help and some time, Dr. Abrams says, people usually create a “new normal.” You may not know what will come in future years or if breast cancer will return, but you can hope to feel better in the face of these unknowns.

“I think part of [feeling better] is accepting that some of it is going to be up and down. It doesn’t mean that you’re going to stay in a permanent state of anxietyinfo-icon or depressioninfo-icon,” Dr. Abrams says.

Fears may fade over time, even if they never go away entirely. Cookie tries to keep her mind on living her life, even if her fears still feel overwhelming now and then, like recently when a friend died from cancer.

“The fear of the recurrence doesn’t immobilize me. It motivates me to not lay around,” Cookie says, “… because I don’t know what the future is going to bring.”  

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