Young cancer patients’ needs go unmet by our health care system
The rate of cancer deaths in the U.S. has steadily declined for several decades. But there’s a caveat: We’ve recently seen a small but worrisome increase in the rate of certain cancers — particularly colon cancers — among adults under 50. These patients have a set of needs that the health care system, accustomed to an older patient population, is not always meeting.
That starts with a timely diagnosis — many aren’t discovering they have cancer until it has already advanced to the later stages. But younger people also require a different type of help during treatment and into survivorship.
The steady rise in colorectal cancers among people in their 20s, 30s and 40s prompted Memorial Sloan Kettering Cancer Center in 2018 to open the first clinic in the U.S. focused on early-onset patients. Several other big cancer centers have followed suit. While a cancer diagnosis is life-altering at any age, oncologists at MSKCC realized that younger patients needed distinct kinds of support.
“We were taking great care of their cancer, but (patients) felt that we were missing other aspects of their lives,” says Robin Mendelsohn, co-director of the clinic.
Unlike most older patients, younger people might be juggling treatment with burgeoning careers, young children, and aging parents. That can create financial strain. More than half of respondents in a 2020 survey of early-onset patients by the nonprofit Colorectal Cancer Alliance said they “often” or “always” felt financial stress and 66% worried their illness would create money problems.
Others might not yet have children and need to confront the possibility that a life-saving treatment could steal their fertility. In the CCA survey, a hefty portion — 37% of women and 16% of men — had been left infertile by their cancer treatment. Yet just 31% of respondents said their care team had discussed fertility preservation. Improving these numbers seems like a low bar the oncology community can surely overcome.
But even when the topic is broached, there’s another problem: Not all insurers cover fertility preservation. Egg retrieval can cost tens of thousands of dollars. Several grant programs exist to cover or defray the cost, but it would be far better for insurers to recognize it as a central part of a young cancer patient’s care.
And young patients also need help navigating survivorship. The tumor might be gone, but its impact could be lasting. Surgery for some types of colorectal cancer can affect sexual function. Some patients might struggle with changes in their appearance, or need an ostomy bag, either temporarily or permanently. “All of that invisibly impacts social relations,” whether that’s a hesitancy to try to date or simply go out to dinner with friends, says Nancy You, leader of the Young-onset Colorectal Program at MD Anderson.
And then there’s the residual anxiety — for some people, even full-blown trauma — of a life-threatening experience. An age-appropriate support network, one where survivors feel understood by people at a similar life stage, can help navigate those challenges. Yet young cancer patients tell me such groups are often hard to find.
Not every hospital has the resources to offer young patients the kind of multidisciplinary team needed to address these physical, mental and financial challenges. For resource-strapped or rural hospitals, referrals to telehealth could play a key role in supplementing in-person care.
One other thing younger patients need: better data. Much medical knowledge about the long-term effects of colon cancer treatment, such as the heart damage linked to common chemotherapies, comes from using the drugs in an older patient population. But if people are getting those same treatments in their 20s and 30s, what are the health consequences when they reach their 50s and 60s? Also, after their cancer is gone, do these younger patients need to get screened more often? MSKCC researchers and others are studying these questions, which would guide the best long-term care for survivors.
While doctors search for answers about what’s causing the worrisome increase in cases, the health care system needs to pay equal attention to the different needs of these younger patients — to maximize their chances for living their fullest life during and after their disease.