Wisdom of the Crowd: Five Tips for Battling Fear of Recurrence

March 1, 2020

Survivor and caregiver support volunteers from Cancer Hope Network get candid with one of the emotional side effects of the disease.

Unfortunately, completing cancer treatment doesn’t mean the worry ends too. Experts say that moderate to high levels of fear of recurrence is a side effect experienced by nearly half of all cancer survivors.

But survivors don’t have to feel alone. Cancer Hope Network spoke with more than two dozen of its survivor and caregiver support volunteers to gather straightforward, practical tips for dealing with post-treatment anxiety.

1) ACKNOWLEDGE YOUR FEAR

Ed, a tongue cancer survivor, notes that fear of recurrence is something all cancer survivors deal with, but its how survivors respond that matters.

For instance, Marci, a two-time survivor of colon cancer, says she allows herself to “feel the fear”: “If fear comes up at a time when I can’t do a bit of introspection, I will tell myself that I can ‘be with my fear’ later that day.”

2) MAKE A PLAN

Christine, a caregiver whose husband is a stage 3 astrocytoma survivor, knows that addressing the grim practicality of details can be necessary. “People have to prepare for the downside just in case it ever happens,” she says. “Know what your family’s needs will be and how you will address them.” But she doesn’t get stuck in the details. “Once you’re done with that, focus on living each day truly in the moment — fully present.”

Linda, a two-time survivor and caregiver, advocates another approach: looking toward the future. “When done with treatment, set a mark ahead maybe two months,” she suggests, “and at the end of that, maybe another two months and then three and so on.”

3) KNOW YOUR BODY, GET YOUR SCANS

Survivors should become active partners in their health care, says Diane, a breast and lung cancer survivor. “Working alongside my doctors keeps me conscious of the positive reality that at this moment I am cancer-free,” she says. “I then choose to live in that moment.”

Long-term ovarian cancer survivor and patient advocate Dee reveals her strategy: “The best way that I’ve found to deal with the fear of recurrence is to not miss your follow- up visits, scans and bloodwork. If you have a symptom or pain for more than two weeks, reach out to your doctor and let them know what is happening.”

Laura, an ovarian cancer survivor of more than 20 years, agrees. “Even if your doctor says you don’t have to come back, if it makes you feel more comfortable, ask if you can come early,” she says. “That’s how they found my breast cancer.”

4) GAIN PERSPECTIVE

Remember that each day is a gift, and make sure each is productive or fulfilling, advises Paul, a prostate cancer survivor and caregiver.

For Donna, who has lived with lymphoma for 19 years, that means finding delight in small things. “I try to enjoy a swarm of birds that has flown overhead, the peacefulness of an early morning sky ... always remembering to be grateful for another day,” she says.

5) FIND REASONS FOR HOPE

“Although we are living with this disease, (we) don’t have to give up on life,” says Kathy, whose metastatic breast cancer was discovered six years ago.

Charlotte, a breast cancer survivor since 2012, chooses to believe that if she eats healthy foods, stays rested and enjoys time with friends, she will have good results. “Worry will only lower my resistance,” she says.

Marilyn, a 20-year breast cancer survivor, despite her cancer recurrence, treasures one of her mother’s favorite sayings: “Don’t lose your todays worrying about tomorrow.”

To be matched with a trained survivor support volunteer, visit cancerhopenetwork.org.


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