What If? Coping With Fear of Recurrence
Published in the Summer 2014 issue of LBBC's Newsletter, Insight
Carol LaRegina, 60, of Raleigh, North Carolina, was diagnosed with triple-negative breast cancer at age 47. She would be diagnosed with a second new breast cancer 4 1/2 years later.
“The first time around, my ‘what ifs?’ weren’t as strong as the second,” she says. “But I was so worried about the cancer coming back that I was constantly doing self-exams. When you’re in treatment, life goes on and you see the light at the end of the tunnel. Then, all of a sudden, you’re done. It’s like being a child thrown out into the streets.”
Carol’s ‘what ifs?’ — commonly called fear of recurrence — are a normal part of coping with breast cancer diagnosis and treatment. It’s natural to worry about breast cancer coming back or getting worse, and also for those concerns to last months to years after treatment.
Though fear can be strong at times, you can take actions to get through it in the moment, keeping it away for periods of time.
About Fear of Recurrence
Fear of recurrence is not only normal but is to be expected, says Hester Hill Schnipper, LICSW, BCD, OSW-C, chief of oncology social work at Beth Israel Deaconess Medical Center in Boston and author of After Breast Cancer: A Common Sense Guide to Life After Treatment (Bantam, 2006). It can begin the moment you are diagnosed or at any time during treatment.
“It’s appropriate to feel this way,” says Ms. Schnipper, who was diagnosed with breast cancer in 1993 and 2005. “It’s also important to realize you’re not crazy. No doctor can ever say someone is cured of cancer. No one gets a guarantee.”
How fear of recurrence impacts you, and how often, can depend on your cancer experience as well as on your emotional health before diagnosis, Ms. Schnipper explains.
If you have a more advanced cancer or cancer that spread to the lymph nodes, had difficult side effects from treatment or have a type of cancer that doesn’t respond to ongoing therapies like tamoxifen, you may fear cancer coming back more strongly than others. Watching family members go through multiple rounds of cancer treatment, being a generally anxious person, having young children and other life factors also may lead to greater fear.
But fear should never be so strong that it overtakes your daily life, Ms. Schnipper says. Anniversaries of cancer milestones, birthdays, family gatherings or certain smells or tastes may spark fear, but that feeling should be less severe as time goes on. Triggers will likely remain, but you may not react as strongly to them as you once did.
“Look at yourself and remember: you’ve gone through treatment and lived,” Carol says. “What’s the point if you’re going to live your life in fear?”
What You Can Do
Nykisha Gaines, 38, of New Castle, Delaware, says, for her, keeping the fear at bay is about managing the messages around her. Diagnosed in 2012, she tries not to worry too much after finishing a year of chemotherapy.
“We tend to neglect our minds,” she says. “We tend to follow popular trends such as be fit, be healthy that only focus on the body. The mind is just as important and needs attention as much as, if not more than, the physical body.”
Nykisha keeps a circle of positive people in her life and relies on her faith to help prevent negative feelings from arising. Like many people after a cancer diagnosis, Nykisha says she wants to end negative relationships and to take steps toward achieving emotional balance.
“You need people around you who will have a positive outlook on the situation. That's the kind of vibe that you'll benefit from,” she says.
But it’s not all about controlling how we think. As with breast cancer treatment, coping with fear of recurrence is personal, and everyone handles it differently. Ms. Schnipper offers this advice:
- Talk about your fears with someone you trust. Don’t suffer in silence.
- Learn more about the kind of breast cancer you have. For some people, having a deeper understanding of what’s happening to your body can be calming.
- Find the right people. Sometimes your friends or family won’t understand your worries, especially if you’re through treatment and doing “well.” A “cancer buddy” — someone who has gone through cancer, too — may be a better person to talk with.
- Follow the “2-week rule.” Everyday pains, cold symptoms or fatigue may lead you to worry that the cancer is back. Most of the time these issuesare nothing serious, but the fear can be intense. The rule suggests you wait 2 weeks to see if a symptom goes away on its own — if it doesn’t, make an appointment to see your doctor to find out more.
- Try stress reduction techniques, such as exercise, meditation, yoga and getting more sleep. Reducing everyday stress can make you feel stronger and more confident.
Knowing your triggers – what events, sensations, memories – bring the fear back can also help. Ms. Schnippers says being aware of your them allows you to anticipate the start of fear, instead of being surprised by it.
“I deal with reading and statistics,” she says. “The Internet can be a scary place, but I needed to prepare myself before I went into my provider’s office. The most amazing thing is how people cope so differently.”
When Is the Fear Too Much?
If you find you’re thinking about cancer all the time, crying most days, waking up at night with your heart pounding or not sleeping, you may be experiencing anxiety, not fear of recurrence.
“It shouldn’t be an intensely negative experience,” says Ms. Schnipper. “If you get to the point where you wonder if you should be talking with a professional, you probably should be.”
Talk therapists and social workers are good people to seek out for professional help. Your cancer treatment center may have these experts on site. If it doesn’t, staff may be able to recommend professionals in your community.
In some cases, your health insurance provider may have a list of professionals you need to choose from in order for them to pay. Try to select someone with experience working with people with cancer, or breast cancer specifically.
You may also consider joining a peer support group hosted by nonprofit organizations, hospitals, community centers or faith groups. Talking with people who relate to your experience can be empowering.
“Although science has come far, our stories are still the same. We’re all going through the same thing,” says Carol.
Ms. Schnipper recommends joining a group with a professional leader or moderator. In some peer-led groups it’s easy for conversations to take a negative turn and stay there. A moderator’s job is to steer the conversation back toward practical things you can do to move forward.
In most cases, fear of recurrence does not become true anxiety. The chances of developing it are greater if you have a medical history with anxiety or depression. If you haven’t experienced them before, it’s most likely that your own fear will fade and only resurface when something triggers it. Over time, other things in life may take the place of the worry.
“I spend my time doing things that are meaningful and significant to me,” says Emily. “You can live a pretty good life in 6 years, and a pretty crappy one in 60. What’s most helpful to me is doing what I need to do to live well and up to my own standards.”