October was Breast Cancer Awareness month and the sudden influx of pink in our homes, on our televisions, in our workplaces, and in local businesses reminded us that we still lose far too many of our loved ones to cancer, not only in this form but in so many others. While the race to discover new diagnostics and treatments remains imperative, there is another pressing issue emerging for patients with cancer.
With advances in early detection, treatment, and oncologic outcomes, many individuals diagnosed with cancer are now living longer and are thus more likely to die from or develop conditions other than cancer. Two thirds of all individuals diagnosed with cancer now live 5 years or more past diagnosis, and the number of such “long-term” survivors in the U.S. will rise from 15.5 million to 20 million by 2026. As such, there is a pressing need to encourage the shift in survivorship care away from oncologists back to primary care physicians and other non-oncologists.
The current practice for many long-term survivors is to stay with their oncologist. In many respects this is completely understandable. Prior to the introduction of modern treatments, a cancer diagnosis was often terminal and encompassed a journey that could include toxic chemotherapy, potentially disfiguring surgeries, and high doses of crudely delivered radiation. Now, systemic therapy for many kinds of cancer is more effective and less toxic, surgery is less invasive, and radiation is more targeted. Understandably, strong and emotionally complex patient-doctor bonds are created when the two work together to overcome what might have been a deadly diagnosis. However, having the primary oncologist remain at the center of a long-term survivor’s care is not always in their best interest.
Although most cancer survivors and the general public may think of recurrence as the primary threat to cancer survivors, for most long-term survivors it is not. In fact, after 7 years out from diagnosis, women diagnosed with any stage of breast cancer are more likely to die of a cardiac event than from breast cancer. Non-cancer mortality is also a significant risk in men with prostate cancer, with a large randomized trial within the Veterans Affairs hospital reporting that 70% of all deaths in men with localized prostate cancer were not related to cancer. Another major concern is that there are simply not enough oncologists in the U.S. to continue this model of care. This is unsustainable for the overall healthcare system and will only get worse as people age and the percentage of elderly cancer survivors continues to climb.
There is irony in the fact that this “problem” exists because of improved outcomes and survival in cancer patients. Nonetheless, improving the status quo will require recognition — and even celebration of — the fact that it’s time for a patient to move on from oncology care. It can even provide an infusion of hope.
We see this recognition in other aspects of cancer care. For example, for patients receiving radiation therapy, this infusion of hope is a long practiced and familiar tradition. Patients receiving curative radiation treatment for various cancers often require several weeks of daily treatments. Every day they arrive, they receive treatment, and then they return home. At the very end of their treatment course, patients are encouraged to loudly ring a bell that is mounted on the wall in most radiation therapy departments. The joyous peals signify the completion of the radiation part of their treatment. While the side effects of radiation often lag (and may not even be fully felt until 1-2 weeks after completing treatment), patients and providers alike still celebrate the beginning of the end. The ringing of the bell marks an occasion for celebration and a transition toward the future.
We need to “ring the bell” and bring the same transition to the treatment model of cancer survivors. A reminder for patients that, “You’ve survived your cancer — now you deserve (and can have) good health and can live a full cancer-free life.” We need to celebrate the transition from cancer care to survivorship care. Initiatives to create a smooth transition from “cancer care” back to “healthcare” include survivorship care plans, and combination oncology and primary care clinics at major institutions and in other parts of the world. In the U.K, for example, this model, called risk stratified care, has become a reality. Low-risk survivors are monitored with minimal self-reported and telehealth-based surveillance.
Much of the reluctance to move toward this improved model of care comes from the patients themselves and sometimes the providers who cherish the bond they have created throughout treatment. A reframing of this relationship is necessary, where success, and therefore the goal from the very beginning, is a transition back to non-cancer life and non-cancer-focused medical treatment. This will ensure the best quality of care for survivors and free up oncologists to turn to the newly diagnosed who desperately need their care as they embark on the fight for their lives.
Michaela Dinan, PhD, is an associate professor of epidemiology at Yale University in New Haven, Connecticut, and a public voices fellow of the OpEd Project. She is an oncology outcomes researcher who conducts research in cancer survivorship.
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