Advocating for Yourself as a Cancer Patient
This blog was originally published by Everyday Health by Cheryl Alkon on August 22, 2019, here.
When Karen Berk was diagnosed with stage 4 ovarian cancer, taking on the role of advocate helped her gain knowledge, emotional centeredness, and a feeling of control.
By Cheryl Alkon
When Karen Berk first had trouble breathing, her primary care physician sent her to the nearest ER, where doctors extracted almost 2 liters of fluid from her lungs. A few days later, she went to a follow-up appointment. Expecting to hear that she had some kind of infection, she instead learned she had cancer. Later, she and her husband, Jeff, found out it was ovarian cancer, stage 4.
Berk, then 44 and the mother of toddler twins and a first-grader, was shell-shocked.
“I was in denial,” she said. “Cancer? This can’t be. It didn’t make sense. But now I know it doesn’t have to make sense. In the beginning, I blindly listened to my doctors because I didn’t know what else to do.”
Berk died in November 2018 at age 49 after living with cancer for five years — longer than her physicians predicted she would — during which she experienced several cycles of remission and recurrence. More than a year before her death, she spoke in an interview with Everyday Health about how coming to terms with her diagnosis meant becoming an advocate, for both herself and other people with cancer.
“In the beginning, I read everything that interested me, which was everything,” Berk said. “I would read posts from people with the same diagnosis who had lived for seven years with stage 4, and I could see that I was not the only one in the world with this condition at my age,” which was a good 20 years younger than the typical woman with ovarian cancer.
“It gave me knowledge and power and control, and that made me feel better,” she said.
Getting Emotionally Centered
After receiving a stage 4 cancer diagnosis, patients may feel the need to tamp down their anxiety, anger, and fear and focus their energy on coming up with an action plan. But experts say it’s important for patients to take the time they need to process their feelings and look for emotional support.
“Try not to rush into anything,” says Lidia Schapira, MD, an associate professor of medicine at Stanford University Medical Center in California and the director of Stanford’s cancer survivorship program. “Try to harness compassion toward yourself.”
Coping with a cancer diagnosis means feeling what you need to feel, not just throwing yourself into crisis mode. “It’s a time to let advocacy turn inwards,” Dr. Schapira says.
Finding Your People
For Berk, traditional cancer support groups “weren’t good for me at all,” in part because she was much younger than everyone else. For instance, other participants would share that when they felt sad, they would play with their grandchildren for a mood boost. “My own kids were young, and I knew I’d never [live long enough to meet my] grandkids,” Berk said. “I stopped going to the groups because they made me feel worse.”
Berk found more comfort at a retreat in Stowe, Vermont, called the Stowe Weekend of Hope, an annual, low- or no-cost event for people with cancer and their families. Not only did she meet women she connected with, she learned information that proved invaluable.
It was May 2015, and Berk was dealing with her first recurrence after chemotherapy and radiation had sent her cancer into remission. She had terrible fatigue and was forced to use a walker. None of the doctors who had treated her in Massachusetts, where she lived, felt they could help her. But she’d found an oncologist in California who specialized in helping people with her particular type of recurrence. She just needed to figure out how to pay for the West Coast flight.
When she shared her dilemma with other attendees at the retreat, someone brought up Angel Airlines for Cancer Patients, a charity for people who need financial help to travel for treatment. Berk was able to get a $600 credit to fly to California. She saw the doctor, who recommended a chemotherapy regimen for her to pursue in Boston. Within a few months of starting the chemo, she could walk without a walker again.
Advocating for Others
As Berk’s health improved, she shared her insights on the Inspire forum. For instance, after two recurrences, Berk began taking a new targeted medication called Lynparza (olaparib) in pill form at home. She described how she worked with her insurance provider to avoid having to pay out of pocket for the drug, which can cost up to $10,000 a month. She also posted about her experiences taking the medication and answered questions about side effects.
On the forum she urged others to advocate for themselves: “Be on top of everything — know what your CA125 numbers are [the markers used to determine whether cancer has returned] and what your MRI results are [to determine exactly where in the body cancer has returned]. Push for results when you have an MRI, and call every day until you get results. When you can catch recurrences early, there are more options.”
Berk also encouraged other people on the forum to take advantage of “the stupid little things,” as she called them, that make cancer treatment less onerous. As an example, she described talking to a social worker at her oncologist’s office to work out how to get her parking fees waived: “I’m going there for the rest of my life, at least once a month, and paying $12 to $15 each time.” The social worker was able to get her a pass for free parking. “There are things you can take advantage of if you know who to ask,” Berk said.
There are a lot of ways to become a cancer advocate. “Everyone can do something,” Schapira points out. “I think all of us need to help others through bad times, and however someone can give back, whether it’s starting a new nonprofit that addresses a need, joining a fund-raising walk, or making a small financial donation to a group on the ground doing this kind of work.”