As We Strive for Cancer Cure, We Must Not Forget the Survivors

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As of today, a cure for cancer remains elusive but there are many promising theories and ideas to eradicate this disease including the Cancer Moonshot announced by President Obama’s administration. There is an ever increasing body of cancer research and knowledge, which continually drives innovative treatments in an effort to improve survival and, ultimately, find a cure. However, there are 15.5 million cancer survivors in the U.S., a number which is growing, who deserve and need support after a cancer diagnosis. This number should but does not include the number of caregivers and/or family members who are also affected by cancer diagnosis and treatment. 

A National Movement for Survivorship

To address the growing need of support for cancer survivors and their caregivers, the National Cancer Institute started the Office of Cancer Survivorship in 1996. Survivorship is a unified model of care to address the psychosocial, spiritual and physical needs during and after cancer treatment.  Cancer survivorship, in its simplest form, is the provision of support and resources for survivors and their caregivers to manage their lives, which are often forever changed.

Medical institutions have since expanded and improved how they prepare survivors for life outside the hospital, building upon guidance from the 2006 National Academy of Medicine’s (formerly known as the Institute of Medicine) report "From Cancer Patient to Cancer Survivor: Lost in Transition." The report highlighted the essential components of survivorship while revealing that many patients get lost in the coordination of care.  Since the report's release, the American College of Surgeons Commission on Cancer set accreditation criteria that have driven significant changes.  Patients should receive treatment summaries upon treatment completion; primary care physicians should be alerted to potential long-term side effects, and facilities are required to screen patients for distress, helping address emotional concerns as they arise.

There is no question that survivorship care improves quality of life that defeating cancer cannot do alone. Yet, nationally, there is a lack of broader, lifelong support and care that can add years to a survivor's life. Some struggles are difficult to hide such as a disability caused by surgery, difficulty walking from the neuropathy common after chemotherapy, or changes in appearance like hair loss.  These often cause distress for the cancer survivor as it affects body image, relationships and interactions with strangers.  There are also challenges that are often difficult for the survivors’ family, friends or co-workers to see or acknowledge such as debilitating fatigue, fear of recurrence, spiritual questions, depression, and even suicidal thoughts.  Often these mental health issues are inseparable from physical health, most directly with inflammation and its associated diseases, although mounting evidence is linking chronic stress to accelerated telomere erosion.

Caregivers are too often overlooked, even though they may have been in crisis since their loved one's initial diagnosis. Caregivers face additional emotional stresses, often made worse in the face of financial, employment and sometimes legal challenges. Post-traumatic stress is not uncommon, nor are unique challenges like loss of fertility or the extreme strain faced by parents of pediatric cancer patients

Cancer Survivorship is Not a Luxury

Survivorship care is not recognized as a reimbursable event by the Centers for Medicare and Medicaid Services.  Insurance companies often do not pay for survivorship services such as wellness amenities (nutrition consults, exercise programs, weight management), expressive therapies (art or music therapy), or integrative therapies (massage, aromatherapy or acupuncture).  Sometimes there is a financial limit for mental health services even for those who are insured.  It is hard to imagine an insurance company paying for art therapy, nutritional advice or dancing lessons, but for some survivors, that is exactly the type of therapy they will need. For too long, this next stage of care has remained unknown or unsupported, and disrupting that status quo will require a national effort involving changes in both survivorship policy and practice.

With the need so great, the oncology community must deliver consistent, effective survivorship care so patients and their families have the resources to continue healing long after the cancer is gone. Survivorship care is now an established medical field but it's far from universally available. It is often confused solely with providing a Treatment Summary and Survivorship Care plan upon treatment completion rather than the holistic and comprehensive model of care designed to provide longitudinal support.

At The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute, we present each patient with a full support team, from expert oncologists and therapists to chaplains, nutritionists and a host of other experts. The coordinated, comprehensive JamesCare Survivorship programs have helped thousands of patients, though many of our survivors live more than 150 miles from our facilities, and too few have local access to follow-up support.

At Ohio State, our survivorship program builds on ongoing research conducted with our patients. For example, in one large study, our researchers evaluated the impact of yoga on cancer survivors. The randomized, controlled study involved 200 women, aged 27 to 76, treated for cancers ranging from stage 0 to stage 3A. All were new to yoga and had completed treatment. Comprehensive surveys tracked fatigue, mental health, diet and activity, and after only three months patients practicing yoga showed strong energy and mood improvements compared to those in the control group, a trend that matched to a dramatic fall in inflammation biomarkers. The benefits extended through six months of evaluation.

While that research received generous support from the National Cancer Institute, traditional funding sources reject many survivorship or even palliative care studies as too "unproven", setting up a difficult catch-22. During the last seven years, Ohio State has partially bridged that gap with more than $106 million from the annual Pelotonia grassroots cycling fundraiser. One recently supported project showed learning Argentine tango can dramatically improve balance in patients with post-chemotherapy neuropathy while improving confidence and mood in patients and their caregivers. With survivors reducing medial and lateral sway by more than 50 percent, the benefits are clear for helping patients manage daily routines.

That study was the brainchild of a pre-med/dance student who partnered with a neuro-rehabilitation specialist and researcher, and such cross-pollination of ideas is not uncommon at a large university. Ohio State's affiliated colleges commonly address survivorship in ways our medical centers cannot. For example, by partnering with food scientists and experts in agriculture, our hospital can incorporate innovative nutritional approaches into studies and treatment. Some projects, such as studies of black raspberries, span decades, while others, such as the Garden of Hope, are more recent and highlight the emergence of cancer survivorship care. In the Garden, survivors and their families can tend to many of the phytonutrient-rich plants that have a proven track record reducing inflammation, while also reaping the emotional benefits long associated with working the earth. The two-acre farm on the agriculture campus is close to the medical center and incorporates programs with dietitians and chefs, so the gardeners learn the healthiest ways to prepare the wide variety of vegetables and fruits. 

At large institutions like Ohio State, the resources are available to bring comprehensive survivorship programs to life and to incorporate a vibrant community of cancer survivorship experts. As those programs expand, there is a further need to ensure such care is available regardless of geography, both through expanded programs at smaller institutions and financial support.

With a truly national survivorship infrastructure, as the fear of cancer begins to fade, so too will the burdens faced by survivors.

This column was authored by Janet Snapp, MSN, RN, FPCN & Dori Klemanski, DNP, CNP, RN.