This article draws on a three-day Smart Patients Ask the Expert conversation with Dr. Benjamin Bates, hosted in partnership with the Elixir Fund. Member experiences from that discussion are shared, alongside Dr. Bates' clinical perspectives and published survivorship research.
Five years after treatment for esophageal cancer, a 68-year-old Smart Patients member had reached an important milestone: no evidence of disease. His oncologist had also made it clear that he would no longer be seeing him unless symptoms returned. The message, delivered through MyChart, included those conditions in red.
"I'm not certain what my next move should be," he wrote.
Completing cancer treatment, and eventually leaving regular oncology follow-up, is the outcome patients hope for. But it can also mean leaving a team of clinicians who know their medical history, understand the treatments they've received, and have spent years monitoring their health. The question of who assumes that responsibility next is not always straightforward.
During a three-day Smart Patients Ask the Expert conversation, hosted in partnership with the Elixir Fund, members explored that transition with Dr. Benjamin Bates, a general internist and Assistant Professor of Medicine and Epidemiology at Rutgers Health. His practice focuses on primary care for adults who were diagnosed with cancer before age 40.
The discussion began with practical questions about finding a primary care physician and managing follow-up appointments. As members shared their experiences, it also exposed a more difficult problem: what happens when responsibility for a survivor's care is spread across several clinicians, and no one is clearly coordinating the whole picture?
The Handoff to Primary Care
For the member with esophageal cancer, Dr. Bates recommended starting with his primary care physician. An annual wellness visit could provide an opportunity to review his cancer history and the recommendations from his oncology team, with a separate appointment if more time was needed for survivorship planning.
The transition is more than a change of doctors. Cancer survivors may need ongoing surveillance for recurrence, screening for other cancers, monitoring for long-term effects of treatment, and care for unrelated health conditions. The particular requirements depend on the original diagnosis, treatment exposures, age, and other individual risk factors.
A treatment summary or survivorship care plan can help communicate those needs to the next clinician. Dr. Bates encouraged members to bring their records and seek a primary care physician willing to understand their cancer history, work with specialists, and take their concerns seriously. An existing referral relationship between the oncologist and primary care physician can help, as can access to shared electronic health records.
Yet records alone do not tell the whole story.
"Medical records contain a tremendous amount of information, but they often miss the patient's perspective," Dr. Bates wrote.
Even when the complete medical chart is available, he asks survivors to describe their cancer history in their own words. What a patient remembers, worries about, or considers most important may be different from what appears in the clinical record.
Who Is Watching What?
One member described how responsibilities had shifted after treatment for gynecologic cancer. Her gynecologic oncologist previously made sure that mammograms and colonoscopies were scheduled. Now she returns to the cancer center once a year for CA-125 blood testing with an advanced practice nurse, while her primary care physician manages the other screenings.
The arrangement works, but it depends on knowing which clinician is responsible for each part of her care.
"A common challenge in healthcare is that one provider may assume another is addressing a particular issue," Dr. Bates observed.
When several clinicians share responsibility, patients can find themselves managing the boundaries between them. A test may be recommended by one specialist, ordered by another, and reviewed by a third. Even when each clinician is attending to their own responsibilities, it may not be clear who is looking across the entire plan.
Dr. Bates encouraged members to ask directly who is responsible for each test, screening, or unresolved concern, even when they aren't sure which clinician should be addressing it.
Those responsibilities can also change over time. Another member described undergoing annual endoscopies with biopsies for 17 years following treatment for esophageal cancer. Only recently had his gastroenterologist suggested extending the interval to three years.
A surveillance plan is not necessarily fixed at the point of discharge from oncology. It may need to be reconsidered as time passes, clinical guidance develops, and an individual's circumstances change.
For survivors of childhood and young adult cancers, the long-term picture can be particularly complicated.
Some effects of treatment may not emerge until decades later. The Childhood Cancer Survivor Study, which followed more than 10,000 adults treated for cancer as children between 1970 and 1986, found that 62% had at least one chronic health condition and 27.5% had a severe or life-threatening condition. Thirty years after diagnosis, the cumulative incidence of a chronic condition reached 73%.
Certain chemotherapy drugs, including anthracyclines, and radiation involving the chest can increase the risk of heart damage years after treatment. The Children’s Oncology Group Long-Term Follow-Up Guidelines therefore recommend monitoring based on an individual's treatment exposures, rather than relying solely on the cancer diagnosis.
For some survivors, that may include periodic echocardiograms to detect changes in heart function before symptoms develop.
These risks make the transfer of accurate treatment information particularly important. A primary care physician needs to know not only that someone had cancer, but which treatments they received and what those treatments may mean for their future health.
When the Pieces Don't Come Together
The advice to bring records, ask questions, and establish a relationship with primary care assumes that there is a clinician who can help put the information together.
One member's experience illustrated what happens when that assumption doesn't hold.
She had been released from oncology with several unresolved medical concerns, including persistently low lymphocyte counts, worsening spine pain, and nodules in her lungs and liver. She described asking for a tumor board review and being declined. One pulmonologist, she said, told her she was too complicated.
She subsequently underwent a series of scans, some of which were interpreted without comparison to earlier imaging. One set was read by an out-of-state emergency service that apparently did not have access to her cancer history.
When she tried to ensure that her clinical concerns were documented alongside another imaging order, a technician added information to the electronic record. But the available field was too short.
"The tech wrote additional concerns in my history but said it wouldn't fit in the tiny line on the computer for indications. Indeed, these were cut off."
Her frustration was not simply with a missing document or an isolated mistake. It was with the "complete lack of communication among any of my doctors and radiologists."
She asked Dr. Bates what patients should do when they need multidisciplinary care but live in rural areas with limited access to specialists, even as specialists at larger centers address only their own areas of expertise.
The question exposes a limitation of the usual advice about navigating healthcare. Patients can prepare for appointments, maintain records, and ask who is responsible for their care. They cannot, on their own, create the coordination that a fragmented system lacks.
Dr. Bates recognized the problem as one that extends beyond the actions of any individual clinician.
"What stands out to me is not necessarily the actions of any individual physician, but rather the challenges that arise when care becomes highly specialized and fragmented."
He advised the member to review her concerns with her primary care physician, distinguish those requiring urgent evaluation from those that could be monitored, and work through them systematically. He also said he would remember her account as a cautionary tale for his own practice.
The exchange left a larger question unresolved. When a patient needs several specialists, who takes responsibility for ensuring their recommendations fit together?
Survivorship Care Is Changing
The medical understanding of cancer survivorship has expanded considerably over the past two decades.
The Children’s Oncology Group published its first long-term follow-up guidelines in 2003. Guidance from the National Comprehensive Cancer Network and the American Society of Clinical Oncology has continued to develop, addressing late effects of cancer treatment, surveillance, and the broader health needs of survivors.
In 2024, the National Cancer Institute released its first National Standards for Cancer Survivorship Care, reflecting growing recognition that effective survivorship care requires more than monitoring for recurrence. It also requires attention to ongoing health, communication, and coordination.
Treatment itself is evolving. In some settings, lower cumulative treatment doses, more targeted therapies, and medications designed to reduce treatment-related complications may change the long-term risks survivors face.
But improvements in treatment and follow-up guidelines do not automatically ensure that information reaches the clinicians responsible for care years later.
One of the more revealing observations from Dr. Bates came when members asked how caring for cancer survivors had changed his own practice.
When he began working with survivors of childhood and young adult cancers, he expected appointments to focus mainly on cancer history and treatment complications. Instead, he found that much of the work involved the same concerns that bring other adults to primary care: managing existing conditions, preventing chronic disease, addressing mental health, and maintaining everyday health.
"I've come to really enjoy putting on my 'primary care' hat during these encounters," he wrote.
For survivors, this ordinary care is not separate from survivorship. Monitoring blood pressure, cholesterol, diabetes, and other cardiovascular risk factors can be particularly consequential for someone whose earlier treatment may already have increased their long-term health risks.
Good survivorship care therefore has two responsibilities. It must account for the lasting effects of cancer and its treatment, while also providing the preventive and ongoing care that every adult needs.
For the member whose oncologist marked the end of follow-up in red, the next step was to establish how that responsibility would move into primary care.
For the member whose scans were interpreted without the necessary history, the problem was harder. Having multiple clinicians involved did not mean that anyone had a complete view of her care.
Their experiences point to the same underlying issue. Ending oncology follow-up is a clinical transition, but it is also a transfer of information and responsibility. Patients need to know who will be looking after them. The clinicians receiving them need the history, guidance, and working relationships to do so.
The end of cancer follow-up may be a welcome milestone. It should not leave patients to work out for themselves who is responsible for what comes next.
Thank you Dr. Bates for sharing your time and expertise with our community, and for listening as closely as you advised. We are grateful to the Elixir Fund for making this conversation possible, and to the members who shared their experiences, questions, and what they learned along the way.