While there is much hopeful news these days on the cancer treatment front, a new report finds that many patients are suffering from unmet financial, emotional, and physical needs.
Many struggle with serious anxiety, fatigue, and difficulty working, according to the Cancer Support Community report. As they live longer, patients say they need more help coping with long-term side effects. A significant portion have skimped on medical care and many have cut spending on food to save money. Forty-two percent of patients reported high levels of anxiety about the financial cost of cancer.
"People talk about the physical toxicity, but we often overlook the financial toxicity of cancer care," said Joanne Buzaglo, vice president of research and training for the organization, which focuses on the emotional and social needs of cancer patients.
The report, the first to emerge from the national organization's new registry of cancer patients, was released this week before a panel discussion at the regional office in Fairmount Park, where its research arm is based.
People with more than 35 types of cancer have joined the registry, which started in 2010 with a pilot program for breast cancer patients. (One finding was that women with metastatic cancer did not like the term survivor.) The number of participants has nearly doubled, from 3,700 in March 2013 to 7,300 now.
Some subgroups are large enough for separate analysis: multiple myeloma, chronic myeloid leukemia, and metastatic breast cancer. Within the next year, the Cancer Support Community expects to have enough patients to add subgroups for patients with lung cancer, melanoma, and chronic lymphocytic leukemia. It also will add caregivers.
While the group is well aware of the power of individual stories, the current initiative is about combining voices to create data, a force more influential in the policy-making world. It also will allow researchers to track how patients' needs and attitudes change over time.
The hope is that doctors, hospitals, and drug and insurance companies will take notice and create a system that better meets patient needs.
Kim Thiboldeaux, the support community's president and CEO, said she thinks the data will fit well in the "emerging national conversation around patient-centered care."
Ide Mills, a health educator in the North Jersey town of Maplewood who has worked as an oncology social worker, was diagnosed with lung cancer in 2011. "Despite knowing what I know, I was not prepared for the myriad of assaults to my body and my psyche," she told the crowd at the Philadelphia offices.
Addressing psychosocial needs, she said, is "integral to caring for cancer."
Participating in the registry made her feel as if she was "contributing to something bigger." It helped to know that others share her problems.
"I don't have to put on that strong face," she said. "I'm tired of it. I can't keep doing it. . . . I know that my experience is one of many and it is being heard."
Some key findings from the report:
Fifty-eight percent of those who had received care at an academic or comprehensive cancer center said they had been asked about distress. That was the case for only 45 percent of those who had been treated at smaller hospitals.
Medical costs had forced 37 percent of respondents to cut back on groceries, 36 percent to dip into savings, 24 percent to use money from a retirement plan, and 31 percent to apply for drug companies' pharmaceutical assistance programs, which provide cheaper medicine.
Among patients with metastatic breast cancer, 12 percent had postponed doctor visits to save money; the same percentages had put off either blood tests or filling prescriptions. A third had postponed seeking psychological help.
Forty-six percent of women with metastatic breast cancer said they were less able to work. Nearly a quarter had lost their jobs involuntarily.
More than half of the total said they wished they had received more help with managing long-term side effects and emotions.
Nearly a third said they were seriously or very seriously concerned about fatigue. More than a quarter were equally upset about sleep problems.
Seventy percent of chronic myeloid leukemia patients had problems with fatigue. Forty-three percent had trouble with concentration or memory.
Patients with any type of cancer can join the registry: www.cancerexperienceregistry.org.