Nearly 10 years after Kara Kenan of North Carolina finished treatment for advanced breast cancer, her routine bloodwork revealed an increased level of an enzyme called alkaline phosphatase. Kenan’s primary care doctor didn’t think that was important, so he ordered no further tests.

But Kenan, who directs marketing for the advocacy group Cancer Nation, knew better: That anomalous blood test could have been a sign that her cancer had spread to other tissues. She contacted her oncologist, who immediately ordered a computerized tomography (CT) scan. “And the CT revealed I had lesions on my liver,” she says.

Kenan is one of 18.6 million cancer survivors in the United States — that’s more than 5 percent of the population. Almost all those patients need ongoing care, known as survivorship care, from clinicians who know the details of their cancer, their treatment and potential problems that can show up decades later. But most do not receive this care, in part because of a longstanding communication gap between the oncologists who treat cancer and other clinicians who take care of the patient.

Instead, many must fend for themselves, often unaware of the cancer-related health risks that should be monitored. “We support patients really well during treatment and provide lots of resources,” says Michelle Mollica, director of survivorship care delivery at Hollings Cancer Center in Charleston, South Carolina. “And then we sort of graduate them, they ring a bell, and we expect them to go on after their cancer treatment is over like their life is back to normal, but it’s not.”

Advocates are not giving up on their conviction that survivorship care plans — an idea proposed 20 years ago — can solve the problem.

Long-term risks

Treatment for cancer leaves long-lasting marks on the body, accelerating signs of aging and exacerbating existing health problems. Chemotherapy, radiation and other treatments can damage a patient’s immune, gastrointestinal, endocrine and neurological systems, and are associated with pain and fatigue, sleep problems, money worries, sexual dysfunction, depression, anxiety, obesity and more.

Cancer survivors have a 47 percent higher rate of developing cardiovascular disease than people who never had cancer, for example, and they have higher rates of pain, insomnia and psychosocial distress. Survivorship care includes identifying and managing these side effects, which can be long-lasting and difficult to treat.

The risk that a cancer might recur years after apparently successful treatment is, obviously, a concern for many patients, but survivors also have an increased risk of developing new cancers, even decades later. “If we look at the 2 million people diagnosed with cancer each year, about 20 percent are people who are having second or third cancers,” says Patricia Ganz, associate director for population science research at the UCLA Health Jonsson Comprehensive Cancer Center.

The need for comprehensive survivorship care to address these ongoing issues has been recognized for decades: The National Coalition for Cancer Survivorship (now Cancer Nation) was started in 1986, and the National Cancer Institute’s Office of Cancer Survivorship followed a decade later. A 2006 report from the Institute of Medicine (now the National Academy of Medicine), From Cancer Patient to Cancer Survivor: Lost in Transition, also flagged the problem. Nonetheless, a systematic way to provide that care to those who need it has never been developed.

The need for such a solution is growing, because the number of survivors is increasing rapidly as improvements in detection and treatments mean more cancer patients are living long lives after diagnosis. In 1971, an estimated 3 million Americans were cancer survivors; by 2035, that number is expected to surpass 22 million.

Yet only about a third of people who completed treatment five years earlier or longer are receiving survivorship care, according to a 2025 survey of patients undergoing cancer treatment and survivors. Of all patients no longer receiving post-treatment care, 58 percent reported that their doctor said it was no longer needed.

That may reflect the fact that, in general, neither oncologists nor other clinicians are well trained to provide long-term survivorship care, Ganz says. She served on the Institute of Medicine committee that produced the Lost in Transition report. “It was really championed by people who were cancer survivors who said, ‘Look, when I go to my family doctor, they say, ‘Oh, I don’t know anything about that. Go back to your oncologist,’” she says.

But this isn’t ideal, says Alex Adjei, chief of Cleveland Clinic’s Cancer Institute and coauthor of an article on survivorship care in the 2025 Annual Review of Medicine: After a patient’s cancer is successfully treated, the patient should be handed off to other clinicians who are trained to address their hypertension, diabetes and other health problems. “If you don’t do that,” he says, “it’s a disservice.”

Shared responsibility

The National Cancer Institute says the best approach is for primary care providers and oncologists to share responsibility for survivorship care. Primary care providers should manage a patient’s chronic conditions like diabetes and high blood pressure, screen for other cancers and encourage healthy habits such as weight management, while oncologists focus on cancer recurrence, says Mollica, who was deputy director of the National Cancer Institute’s Office of Cancer Survivorship until 2025. But though patients may indeed see more than one doctor, that type of collaboration is not common. “There’s often issues with coordination and communication, so lots of fragmented care,” she says.

The Institute of Medicine’s report sought to overcome that problem two decades ago. Its recommendation: When cancer treatment ends, the patient and their primary care physician should receive from the cancer doctor a survivorship care plan that details what to expect during recovery, what ongoing care is needed (mental health services to treat depression or physical therapy to help with mobility, for example), and the schedule for recommended cancer screening and other tests. For a few years, the Commission on Cancer, the accreditation body for cancer programs, even required survivorship care plans.

But the idea never got traction, for several reasons. By the time a patient’s treatment ends, a patient’s medical record contains months and even years of test results, tumor characteristics, surgeries and other therapies, and other information that might inform their health for the rest of their lives. That’s a lot of information to convey, without an easy way to convey it.

Oncologists balked at the unpaid work involved in compiling all that information and didn’t fully commit to the effort. “It was like, here’s a piece of paper, this is going to change your care, and it just didn’t,” Mollica says. “It became a checkbox, and not a conversation and ongoing process for survivorship care.” Possibly because few patients actually received plans — and, in some cases, neither patient nor primary care physician knew what to do with them — evidence that patients benefit from the plans has never been established.

Some large cancer centers have successfully applied the care-plan model, though. At the Cleveland Clinic, Adjei is working to create a system in which all survivors get the care appropriate for their specific situations.

For example, adolescents and young adults are treated at the Integrated Program for Young People with Cancer, which can address their special needs, such as strategies to balance cancer treatment with fertility preservation. Another clinic identifies survivors with genetic damage from cancer therapy that affects bone marrow and, over many years, increases an individual’s risk of heart disease and blood cancers. And survivors who received relatively novel therapies, for which long-term effects are still uncertain, are treated at Cleveland Clinic’s Oncology Pharmacovigilance Clinic, where rheumatologists, dermatologists, psychiatrists, pulmonologists and other specialists monitor side effects.

But most patients who go to Cleveland Clinic for cancer treatment get their survivorship care from the oncologist who treated their cancer. And many of them want to continue seeing their oncologist. “This is like a psychological crutch for them and there’s separation anxiety,” Adjei says. But Adjei thinks closer collaboration with primary care would benefit everyone. Men who have had prostate removal after a cancer diagnosis do not necessarily need a cancer specialist to monitor for markers of recurrence. “They could easily go to their primary care so that their urologists can have time to deal with the surgeries they need to do,” he says.

And so Adjei and colleagues are currently working to assemble a range of services — mental health, social work, financial counseling and others — that survivors frequently need. “And my end goal is to integrate our primary care group into it,” he says.

Despite these promising efforts at Cleveland Clinic and other major centers, the nationwide story on survivorship care plans is not good. Only 36 percent of cancer patients who complete treatment receive such a plan, according to the 2025 survey of survivors. To improve that record, Cancer Nation, the advocacy organization, is pushing Congress to pass the Comprehensive Cancer Survivorship Act and the Cancer Care Planning and Communications Act, which would require Medicare to pay health care providers for creating survivorship plans and coordinating with other clinicians to make sure survivors get the care they need.

Until that happens, many cancer survivors will be left on their own. In Kenan’s case, the lesions on her liver turned out to be benign. But the fact that her primary care physician did not know the significance of rising levels of alkaline phosphatase in her blood reflects inadequate communication and coordination that risks a survivor’s health. “That’s a real problem,” she says.

Survivorship plans could solve many issues, providing detailed information to facilitate conversations, easing the burden on primary care providers and relieving survivors of stress and worry. The result, she says, is that “we all get better care.”