Survivorship movement helps people learn to live well with cancer

Tom Brokaw candidly shared the emotional and physical effects of cancer in his recent essay in the New York Times. He revealed not only the challenge of his illness but the burden of treatment and the lingering effects that persist long after treatment is over. His struggles and doubts are similar to those faced by nearly 15.5 million cancer survivors living in the United States.

As cancer treatments improve, that number will grow, and millions more will have to learn to live a life forever altered by cancer. As nurses trained to help cancer survivors, we see the challenges they face every day. Yet we draw hope in knowing that those challenges can be addressed.

Living with cancer does not have to mean losing quality of life. As awareness grows, so will the ranks of those who learn to enjoy life after a cancer diagnosis.

You can survive cancer, but you can’t erase it

In recounting his experiences, Brokaw referred briefly to the effects of chemotherapy, as well as to the effects of surgeries and the long-term need for medications. All contributed to his sense of aging beyond his years, a new normal for so many.

Twenty years ago, few of us could have predicted the advancements in cancer care that have, for many people, transformed cancer from a death sentence to a chronic condition. That said, surviving cancer well requires long-term support. That should be covered by our health system, but often isn’t.

Brokaw mentioned how his new life “requires 24 pills a day, including one that runs $500 a dose.” Imagine the burden for someone who isn’t well-off, or is having trouble affording routine health care. For too many Americans, the best treatments aren’t an option.

It takes teamwork

Assembling a team of experts — ideally at the time of diagnosis — is the first step in preparing for a cancer survivor’s future. It truly takes a village. Oncologists and primary care physicians can work with rehabilitative specialists to address physical debilitation after cancer treatment. Add in experts in psychosocial and spiritual care such as psychiatrists, social workers, financial counselors, or clergy to help survivors cope with and address the multifaceted effects of cancer treatment and beyond.

This kind of approach is relatively new. Palliative care to aid the dying, with its medically trained and certified practitioners, was a niche field a few decades ago. Survivorship — addressing the assortment of changes that follow a diagnosis of cancer to survivors navigate their new lives — is even less well-known, its tools and resources often unheard of in many parts of the country and its costs ignored by insurance providers.

There has been some progress towards recognizing the needs of those facing life after a cancer diagnosis. In 2006, the Institute of Medicine (now the National Academy of Medicine) released the breakthrough report “From Cancer Patient to Cancer Survivor” to raise awareness of the challenges. The report brought survivorship closer to the mainstream, and encouraged the American College of Surgeons Commission on Cancer to set accreditation criteria.

Now some of the top recommendations — including requiring oncologists to provide treatment summaries to patients with guidance for their primary care physicians, and new requirements to screen patients for distress — are being incorporated into the complex maze of cancer care.

A new life, not just an extended one

For the patients we treat at The Ohio State University Comprehensive Cancer Center, care is coordinated by our JamesCare Survivorship team and our Palliative Care Center. This comprehensive approach manages both symptoms and quality of life. Doctors are connected to doctors, while patients and their families meet experts with the knowledge and training to address the complex challenges that arise from fatigued bodies, shaken spirits, and lost work.

All of it begins with a survivorship care plan. This personalized approach covers the individual’s past treatments and medications to alert for long-term effects, a schedule of follow-up tests to keep abreast of future risks from cancer and associated illnesses, insights into signs and symptoms of any related illnesses that could emerge, and access to extensive lifestyle support.

That last category, while least covered by modern health care, can have some of the most profound impacts. From support groups and educational classes to arts programs, financial counseling, and employment guidance, lifestyle elements can make the difference between just surviving cancer and living well with it.

Study after study is confirming what cancer survivors already know — rich experiences and a focus on overall well-being yield benefits for physical and mental health. When coordinated into a survivorship program, they offer the best chance for a better life.

Brokaw raised awareness for a simmering crisis that affects many but is known to few. We must all take his message as a call for greater access to such essential care. For many, a cancer diagnosis has been described as a “teachable moment.” Brokaw describes an abrupt stop and reckoning of priorities. Perhaps his essay can be a teachable moment for our nation.

Janet Snapp, MSN, is service line administrator and Dori Klemanski, DNP, is director of survivorship at The Ohio State University Comprehensive Cancer Center — Arthur G. James Cancer Hospital and Richard J. Solove Research Institute.