Based in Akron, Familial Cancer Foundation of WNY has been active since its foundation in 2015
By Deborah Jeanne Sergeant
When Andrea Whitmarsh’s mother, Dawn Sagerman, learned she had a genetic mutation predisposing her to breast cancer in her late 50s, she opted for a preventive double mastectomy.
Whitmarsh was 30 and pregnant at the time. She learned she also carried the mutation. It put her at a 50 to 85 percent lifetime risk of developing breast cancer and a 40 percent lifetime risk of developing ovarian cancer.
“The first thing they asked me was if I wanted to schedule surgery — but I wanted to nurse my first daughter,” Whitmarsh said.
She nursed her daughter for 14 months. Once the girl was weaned, Whitmarsh began a regimen of annual breast MRI and breast ultrasound, alternating every six months. While she did not select preventive mastectomy, the significance of her genetic mutation hangs over her.
“There is no support for people with this, women who have proactive mammogram,” Whitmarsh said. “We didn’t have chemotherapy or radiation.”
However, the mutation elevates her risk of breast cancer, ovarian cancer, pancreatic cancer and melanoma.
Men can also have the BRCA mutation, which raises all the same risks except for ovarian cancer and plus prostate cancer. Whitmarsh said her uncle wanted to receive testing and his doctor told him he didn’t need it, even though men can have breast cancer and that the presence of the mutation indicates higher risk for many other cancers. Insurance refused to cover it.
After two years, he was diagnosed with a very aggressive prostate cancer. He was tested and found positive for the mutation.
“When you have prostate cancer and are BRCA-positive, you should have the prostate removed,” Whitmarsh said. “Any male under 55 with prostate cancer should have genetic testing, but his physician would not push it.”
In 2015, Whitmarsh, her mother, and her mother’s physician, Yellamraju Kumar, founded Familial Cancer Foundation of Western New York to help promote education to physicians and the public about genetically-influenced cancer and provide support for those who need testing or have been diagnosed. The organization is based in Akron.
“It’s been an uphill battle because we don’t know a lot of physicians who know about this,” Whitmarsh said. “We can’t say to people to ‘go talk with your doctor’ because the doctor won’t know what to do with them.”
She said that since the health care system has become overwhelmed, doctors may not have the time to stay up-to-date on the very latest discoveries, including familial cancer.
“My primary care doctor works 16 hour days, seven days a week,” she said. “How well is a doctor working and keeping up if they work that many hours a week?”
Their organization’s board includes a genetic counselor.
Identifying those who need testing represents a big part of the organization’s mission. Whitmarsh said that 95 percent of people who have a mutation don’t know. About 15 percent of cancers are related to genetic mutations.
This fall, the organization is starting its salon and spa outreach. The idea is that many women going to a spa or salon enjoy talking with the stylist or spa staff. Educating them on genetic mutations can help them engage clients on the subject. Whitmarsh thought of the program after her aunt, who works at a salon, kept running out of the organization’s brochures because she handed out so many to clients.
“We want people to know the criteria for being tested,” Whitmarsh said. “If they put pressure on physicians, they’ll start learning about it. We can provide the physicians with whatever they need.
“Doctors are so busy now, they don’t have the time to ask, ‘What’s happened in your family cancer history lately?’ A lot of women might have a better relationship with their salon worker than their doctor.”
Whitmarsh maintains that insurance should cover genetic testing instead of the $2,000 out-of-pocket cost to patients. She said that another reason it’s so hard to obtain genetic testing is that they don’t hire many genetic testers and these professionals can’t work independently of the hospital setting.
“When they see a patient, it comes out of the bottom line of the hospital,” Whitmarsh said. “It’s hard to hire genetic counselors because it costs the hospital money.”
She knows women who endured cancer treatment before finally receiving genetic testing. Once they test positive for a mutation, they finally have a double mastectomy — surgery that performed preemptively could have spared them chemotherapy and lumpectomy.
The foundation also promotes general good healthy lifestyle, such as stress reduction, eating well, and exercise to help people maintain good health. Whitmarsh’s mutation diagnosis caused her to focus more on her own health habits.
The organization has no paid staff, but relies upon ten board members and 15 to 20 volunteers. Events such as a golf tournament in June, wine tasting in November raise funds for the foundation.
More Information
For more information about Familial Cancer Foundation of Western New York, visit
www.fcfwny.org.
The Long-Term Financial Toll of Breast Cancer
The financial fallout from breast cancer can last years after diagnosis, particularly for those with lymphedema, a common side effect from treatment, causing cumulative and cascading economic consequences for survivors, their families, and society, a study led by Johns Hopkins Bloomberg School of Public Health researchers suggests.
Excluding productivity costs, those with lymphedema were estimated to have an average of $2,306 in out-of-pocket costs per year, compared to $1,090 for those without lymphedema—a difference of 112 percent, the study found. When factoring in productivity costs, those with lymphedema spent an average of $3,325 in out-of-pocket costs, compared to $2,792 for those without lymphedema.
“That extra $2,000 or so may not break the bank in one year,” says study leader Lorraine T. Dean, ScD, assistant professor in the Department of Epidemiology at the Bloomberg School. “But it can take away discretionary spending, or whittle away retirement savings. If it’s a recurring burden each year, how can you ever rebuild? That extra $2,000 in spending can cripple people over the long term.”
The findings, published Aug. 18 in the Journal of Supportive Care and Cancer, are a call to action for policymakers to develop new ways to curb costs after cancer, the authors say.
A growing body of research highlights the “financial toxicity” of cancer, a term that pertains to the harmful personal economic burden caused by cancer treatment, explains co-author Kala Visvanathan, a professor in the Bloomberg School’s department of epidemiology. The financial consequences of cancer have been shown to affect mental health and a variety of other health outcomes, including rates of death.