As of today, a cure for cancer remains elusive, but there are many promising theories and ideas for eradicating this disease. There are 15.5 million cancer survivors in the United States — a number that 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.
Cancer survivorship is a unified model of care to address psychosocial, spiritual and physical needs during and after cancer treatment. In its simplest form, survivorship is the provision of support and resources to help survivors and their caregivers manage their lives, which are often forever changed.
Medical institutions have expanded and improved how they prepare survivors for life outside the hospital. 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.
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, such as hair loss. These often cause distress for the cancer survivor as it affects body image, relationships and interactions with strangers. There are also difficult challenges 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.
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.
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. 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. 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 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. It has been adapted.