Catherine Desfosses got the medical care she needed when she was diagnosed with cervical cancer 24 years ago and was declared free of the disease five years later. But she found little help when it came to coping with the disease’s emotional and social tolls.
The Asheville woman has since become an advocate for addressing the “psychosocial” impact of cancer. In 2012, Desfosses founded local nonprofit Journey to be FREE Naturally, designed to address the psychosocial needs of people affected by cancer and bridge gaps in cancer care. “We believe no one should travel the cancer journey alone,” she says.
Desfosses is also spearheading plans to open a facility dedicated to those goals, and she’s partnered with Cancer Support Community, an international organization providing professional programs for people affected by cancer. CSC has 50 licensed affiliates and six hospital partnerships across the country.
Two decades ago, doctors “were getting rid of the cancer out of my body,” says Desfosses, now 57. “But how I was feeling, how it impacted me and my kids, who were babies at the time, my husband, what they were going through, wasn’t being addressed. We had to figure all that out on our own,” she says.
“As the years were going on, other cancer survivors were coming to me, and they’re sharing the exact same story,” she says. “Nothing had really changed over the years, and I finally decided we needed to do something about that.”
One goal is establishing a new facility in the Buncombe/Henderson County area with educational and outpatient services for cancer patients and their families, says Jay Lockaby, senior vice president for affiliate relations and strategic growth with Cancer Support Community.
“What we’re talking about is a brick-and-mortar, homelike setting here in Asheville to provide professional services for people affected by cancer — patients, caregivers and loved ones,” he says. “That’s the vision, and Catherine has already done a lot to make that happen.”
The services will be free, says Lockaby.
“We provide a homelike setting away from the hospital where there’s a community of people affected by cancer,” he says. “So they may have a yoga class, they may have a lecture on nutrition by professionals. But afterward, they may have coffee together in the kitchen and talk about their experience. And they may talk about their kids and what’s going on in their life. That kind of experience is priceless.”
Desfosses says pursuing the affiliation with Cancer Support Community made sense.
“That outpatient resource is so needed,” she says. “We saw that there was a need, and we founded the [local] organization to fill that need.” Because of Cancer Support Community, Desfosses didn’t have to re-create the wheel and come up with something similar on her own, she adds. “It made sense to pursue an affiliation and bring what they have to our area.”
Cancer Support Community has 35 years of experience providing services and guidance to local chapters. The partnership allows for a lot of local control and flexibility, says Lockaby. Fees paid to the organization by its chapters amount to less than 2 percent of local budgets, generally around $5,000 a year.
“We’ve been around a long time, so we know what programs work and how to structure things and how to get a full community of support going,” he says. “We say you need to be doing support services, you need to be doing education services, [promoting] healthy lifestyles, social activities, and resource and referral. We know those are the five components we need to do to help people learn to face cancer together, and no one ever faces cancer alone.”
Journey to be FREE Naturally needs to raise about $400,000, with a goal of opening the facility in roughly two years, Lockaby estimates.
“We typically want to see a year’s budget in the bank in cash before [a chapter] opens the full-fledged program, and that’s why our affiliates are successful,” he says.
Dr. Rachel Raab, an oncologist with Cancer Care of Western North Carolina, says the region needs the services that CSC can provide.
“For patients with cancer, and certainly their loved ones, the diagnosis is overwhelming, extremely stressful,” she says. “It creates a lot of anxiety for many patients, a lot of fear and depression. And I think it’s important for patients and family members to have as many resources to kind of assist with that as possible,” says Raab.
“It’s kind of well-known that all over the country, behavioral health services are really difficult to find, and for cancer patients, it’s just so important that they receive that psychosocial support that they need,” she says.
Educational and other support services are available at some area hospitals and cancer treatment centers, but a broader focus is needed, Raab adds.
“Patients feel that the whole world is completely turned upside down when they hear the words ‘You have cancer,’” she says. “We need to help them get through their diagnosis and their treatment and feel like they can go on to live a fulfilling life. I’m not sure that lives ever really return to normal after you’ve had cancer, but I feel like patients need to know they can find a new normal and still enjoy life. Educational programs are extremely important to the overall well-being of patients and their caregivers.”
In the past decade or so, says Lockaby, there’s been a renaissance in the way health is defined. It’s no longer understood as just a physical state of well-being, but a mental and psychological sense as well.
“And cancer is one of those leading spaces where the thinking has really broadened to not just treating the tumor and the biomedical aspects of cancer, but treating the whole person,” he says. Treatment is about “having support groups, it’s having lectures on nutrition and doing yoga, connecting with others facing the same experience so you feel like you’re not alone,” says Lockaby. “It’s all of those things that are attending to nonmedical needs that people may need around cancer.”
Cancer patients with such support services are more compliant with their treatment plans, Lockaby says, citing recent research. They’re less likely to stop taking their chemotherapy or skip radiation treatments, and they lead more active lives. Surveys show that patients report their quality of life is better and they have less regret about their treatment decisions, he says. Cancer death rates decreased by 1.5 percent a year from 2003-12, according to a report issued this year by the Centers for Disease Control and Prevention.
But more people are getting cancer as the population ages. According to the American Cancer Society, there will be an estimated 1.7 million new cancer cases in the United States this year, along with 596,000 deaths from the disease. North Carolina is expected to have 54,450 new cases.
“The leading risk factor for cancer is age,” Lockaby says. “The average age that someone gets diagnosed with cancer is about 66 or 67. The average age of the leading edge of the boomers is around 66 or 67. Boomers have always driven the numbers, so there’s a bulge coming. The need [for support services] is going to be increasingly significant,” he says.
“The good news is people are living longer with the disease because of the new treatments that have been coming out in the last 10 years,” says Lockaby. “People are living longer than they ever did, and they need our services more and more and more.”