What if It Comes Back? Dealing With Fear of Recurrence

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 cancer in May 2016. Josephine is 37 years old and has three children at home. She was helping care for her mother, who was getting chemotherapy 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 distress 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 oncologist 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 group 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 anxiety or depression,” 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.”