Surviving cancer can feel like navigating a new city without a GPS: The major surgery is over, but the problems aren’t. You may be tired all the time. You may have foggy chemo brain. Or survivor’s guilt.
Cancer caregivers, too, can feel like they’re winging it. They can feel emotionally and physically spent with no one to talk with.
A new report, based on the experiences of cancer survivors and caregivers shared in community events throughout North Central Florida in partnership with regional cancer control collaboratives, outlines ways to help both. UF Health Cancer Institute officials submitted the report this month to state officials to help identify and address cancer survivorship and caregiver needs.
“We wanted to make something as actionable as possible so we could make recommendations to the state, to healthcare systems and to cancer care collaboratives,” said report author Vaughan James, Ph.D., a researcher in the institute’s Office of Community Outreach and Engagement.
There are now more than 18 million cancer survivors in the United States, and the number is expected to exceed 22 million over the next decade, thanks in large part to cancer research that has led to new, more effective treatments. Yet, survivors face numerous physical, emotional and financial challenges because of their cancer and treatment.
Survivors highlighted the need for information about the practical consequences of cancer, an area that often receives less attention from medical teams.
“It was, ‘If I just had a mastectomy, what bra do I buy?’” James said. “‘I sleep on my stomach, but I can’t do that anymore, how do I deal with that? What lotion do I use to reduce pain or scarring?’”
One recommendation is for health systems to form survivor advocacy groups or boards and work with them to develop that information. That could allow physicians to focus on other aspects of medical care while allowing survivors to help others. Another recommendation to reduce overwhelming feelings is to give patients physical guides to help with decisions when they’re diagnosed, then schedule a consultation 24 to 48 hours later.
“That would give people a moment to take a breath, calm down and think about what they would like to know, rather than blanking out in fear and having to resort to other people doing it,” James said.
Another survivor challenge is navigating differences between expectations and reality.
“A lot of cultural representations portray treatment as a linear process, when that’s not actually people’s lived experiences of cancer,” James said. “More could be done to properly navigate people through the reality of a constantly shifting treatment plan, which can be upsetting or confusing.”
Many survivors also expressed feeling isolated as they transitioned from cancer care to regular primary care. The report recommends making that handoff more formal with the support of patient navigators. Researchers also recommended that cancer care collaboratives develop continuing medical education curriculums on survivorship for primary care physicians and healthcare professionals.
Caregivers are an indispensable foundation, but their needs are often overlooked, James said.
“Caregivers need a lot of peer support that they don’t get,” he said. “Importantly, it was requests for moving beyond medical information. What we heard was, ‘This was frightening and isolating. I need someone that’s been through this so they can help me understand what to expect, what they did, so I don’t feel like I’m winging it without an instruction manual.’”
One suggestion was a “buddy system” that would pair caregivers with a peer who had been through a similar experience and could share what worked for them.
“Caregivers also had a lot of requests for social support,” James said. “It was, ‘I want someone I can sit down and have a cup of coffee with who knows what I’m talking about and can understand the way I feel.’”
The events were held in Alachua, Duval and Seminole counties in May and June. They used a research technique called journey mapping. Cancer survivors and caregivers were asked to share what helped them and what they needed at specific time points, from initial diagnosis, through treatment and extending years after treatment. Three more events will be held later this fall.
“There’s so much value that comes from lived experience — that’s where you can get at the heart of what matters and what’s needed is to hear directly from the individuals who are living through it,” said Jennifer Woodard, M.P.H., R.N., director of the Office of Community Outreach and Engagement.
Susan Barefoot, 75, a pancreatic cancer survivor, attended an event in Gainesville on June 19 hosted with the WellFlorida Council and North Central Florida Cancer Control Collaborative.
“Sometimes all the healing you need is just to have someone in common with what you might have been going through who you can bounce things off of,” she said.
Ultimately, the events provided a much-needed forum for people to open up and be heard.
“One of the participants whose wife went through cancer told us, ‘I’ve never done this before, I didn’t have anyone to talk to,’” James said. “People feel really isolated and alone. We’re not going to fix cancer care overnight. But we can help people feel less alone just by asking about their experiences and sincerely listening to them.”
