Fear Factor

A headache must mean a metastatic brain tumor. Insomnia sets in until a scan can be arranged. When sleep finally comes, the first thought in the morning is of cancer recurring. Fear of cancer returning consumes waking hours. The scan is clear.

This scenario was repeated multiple times after initial cancer treatment for Matthew Zachary, founder of Stupid Cancer, a nonprofit organization for young adult cancer patients launched in 2007.

In 1995, Zachary, then a 21-year-old concert pianist, was focusing on his final year in college at Binghamton University in upstate New York and making plans to move to Los Angeles to begin film school. When he began to have problems with his left hand, he was misdiagnosed for six months before learning that he had a medulloblastoma, a rare cancer that occurs in the part of the brain that controls movement and coordination, primarily in young children.

After surgery to remove the tumor, Zachary took a leave of absence from college and moved home with his family on Staten Island while undergoing craniospinal radiation. Thanks to what he calls some gracious faculty members, he was able to finish college, after which he returned to Staten Island and crawled into bed. By November, he says his father told him to “Go get a job.”

“I resented having to work,” Zachary recalls, but he did, beginning what he now calls his second career in advertising, public relations and web design, providing the platform in 2007 to create Stupid Cancer, a nonprofit for young adults with cancer, which hosts a nationwide Monday night radio show and an annual meeting, the OMG! Cancer Summit.

“There was no effective chemotherapy that I could use at that time, so it was only radiation. And they couldn’t give us specifics on recurrence,” Zachary says. “For younger children who were around 6, it was 50 percent survival for five years. I wanted 100 years.” (Today, survival rates have improved, ranging from 60 to 80 percent.)

More than 17 years after his initial diagnosis, Zachary still struggles with what the medical community has labeled fear of cancer recurrence (FCR), saying that he has learned to live a life in which every twitch could mean the cancer has recurred somewhere else in his body, and every headache might be a brain tumor.

FCR ranks as one of the most common unmet needs of cancer survivors, according to a review of 130 papers on the topic published in the Journal of Cancer Survivorship in March 2013. The review, while unable to determine numerous consistent findings due to variations in the study designs, did find associated factors around higher FCR and younger age, presence and severity of physical symptoms, psychological distress and lower quality of life. Other studies have shown that women may be at higher risk of FCR.

Who will suffer from FCR remains individualized and can ebb and flow depending on patients’ support systems, their level of education and their own psychological views.

The triggers for what could be called an episode of anxiety are a set of external and internal clues, says Laurel Northouse, professor of nursing at the University of Michigan School of Nursing in Ann Arbor, Mich. She says that an upcoming medical appointment, news of a celebrity’s diagnosis or a friend’s recurrence can potentially bring on FCR, while experiencing a strange physical symptom can result in anxiety, insomnia and requests for scans.

Who will suffer from FCR remains individualized and may ebb and flow depending on patients’ support system, their level of education and their own psychological views.

What FCR can produce is a psychological response often referred to as intrusive thinking or “rumination,” she says, when negative outcomes are experienced in a continuous vision, and when future plans are canceled for fear of death, or the energy to begin new friendships seems pointless. Yet, how it manifests is unique among individuals, with her research showing caregivers experiencing FCR more intensely than patients in some instances.

Even the definition of FCR has yet to be formalized. The accepted understanding is that it is “fear that cancer could return or progress in the same place or in another part of the body,” a definition that survivors such as Zachary might think an understatement.

Amy Jacobson, a nurse practitioner at the UCLA-LIVESTRONG Survivorship Center of Excellence in Los Angeles, says she hears many questions about cancer recurrence when developing a survivorship care plan with patients. In many instances, the fear may be tied to the unknowns of the cancer and its specific pathology, which she can usually quell through education or by sharing published guidelines.

“For example, for breast cancer, we have guidelines published by the American Society of Clinical Oncology (ASCO),” Jacobson says. “They outline specific symptoms that need follow-up,” such as new lumps in the breast, bone pain, chest pain, abdominal pain, shortness of breath, difficulty breathing and persistent headaches. Getting a scan with minimal symptoms that are not suggestive of a true recurrence will increase the proportion of “false positives” seen on scans relative to real recurrences, and could lead to unnecessary risks of biopsies or surgical procedures to follow these up.

“Patients want to know why they aren’t getting routine full body scans or blood work all the time to check for recurrence, and I can use these guidelines to talk with them about how clinical trials have shown they aren’t necessarily beneficial for breast cancer survivors,” Jacobson says.

[Checklist: Coping with Fear of Recurrence]

What is most important for patients in managing fear of recurrence is having a good therapeutic relationship with their doctor, she adds. Then, if they have a symptom that they think should be investigated, they may be more comfortable discussing it.

Jacobson also emphasizes participating in a good post-treatment support group, such as those available through the Cancer Support Community, or learning techniques, such as meditation, to keep the mind calm.

“Everyone’s mind can go from 0 to 60 in a second, and it’s best to put the brakes on before things get out of control,” she says.

Alejandra Perez, a breast medical oncologist at the Memorial Breast Cancer Center in Hollywood, Fla., concurs, but says offering the logical solution may not work when the fear is too great. “We spend a significant amount of time on four things when women come in for follow-up: weight gain, hot flashes, sexual dysfunction and fear of recurrence.”

Perez says if they come in with a headache, they want an MRI of the head, “always more imaging.” She tries to educate with the same ASCO guidelines Jacobson uses but also knows that peace of mind only comes with time for some women. For these women, Perez will order a scan, if their insurance allows it.

“You encourage them to listen to their bodies, but on the other hand, you don’t want every symptom to be cancer,” Perez says. “We all get headaches, and we all have aches. I tell them we are looking for things that don’t go away; things that wake you up at night. It’s not a headache where you feel better the next day.”

For Zachary, the years provided what he calls “strategic distraction.” He had to relearn how to play music, which he did.

“And I got a girlfriend, whom I married,” he says. “All these things buffer out the noise.

“Standing in my office, I know I am living the best I can,” he says. It’s not denial, he adds, it’s acceptance. Zachary is now the father of 3-year-old twins, though FCR returned after their birth.

“Being a parent changes it all,” he says. “It got a little worse after the kids were born. ‘What were we thinking bringing children into this world?’ But we did it. You can’t let it control you.”

Zachary says he is far enough away from his cancer treatment that now he worries about getting cancer as a result of the radiation, and he has already had one late effect of the treatment, a radiation-induced stroke, in January 2011.

“The radiologist misdiagnosed it as a recurrence,” he says. “My kids weren’t even [a year old] yet.”

But, he adds, you have to grow a protective skin. “You have to feel the fear, know the fear and know you can control only part of it and do it anyway,” he says.

“That doesn’t mean you don’t cry every so often,” he adds. “It’s a constant reminder. I have chosen this. It’s how you choose to live.”