The ground shook under me, as if a puzzle piece the size of Africa had just plopped into place. In my mind’s eye, a revised image emerged of the patient at the heart of modern cancer care—the survivor.
No, I am not trying to be dramatic. For the past 20 years, I’ve been thinking, talking, and writing about survivorship. What a thrill to gain new insight into this word I use every day.
Let me take you back to the beginning. When I was diagnosed in 1990, “survivor” was gaining traction as the preferred alternative to “victim” for people with cancer. Of the various labels jockeying with “survivor” in nascent cancer communities—“thrivers,” “warriors,” “patients active,” and even “the blessed”—I embraced survivor.
Why? Because the week I was diagnosed, “The Networker” (the newsletter of the National Coalition for Cancer Survivorship) arrived in my mailbox. Brief biographies of busy “survivors” inspired me. Their smiling faces contrasted with my memories of cancer patients holding their breath until the five-year mark passed.
Like a duckling imprinting to the first mother-figure on the scene, I followed their lead away from the fear, helplessness, and hopelessness of victimhood by calling myself a survivor, too.
“Thriver” or any of the other labels would have worked equally well had they been given the same definition—“from the moment of discovery and for the balance of life.”
Or so I thought, until a recent discussion with Dr. Julia Rowland, the Director of the National Cancer Institutes’ Office of Cancer Survivorship, prompted me to put aside the definition for a moment and concentrate on the label.
A survivor is someone who gets through adversity. From reality television to guerilla warfare, a survivor makes it to the other side to face a new day. Maybe even to create a new life, one shaped by the circumstances he or she survived.
Of all the labels offered, “survivor” is uniquely suited to the task by virtue of its link with time: A survivor is someone with a future.
This link to tomorrow is crucial. I see now that the founders were hoping for more than the satisfaction of helping patients, caregivers, and health care professionals perceive patients in hopeful, empowering ways. Their ultimate goal was to change the philosophy of cancer care.
They wanted clinicians to look at each patient as someone who might have a long life, and to feel responsibility now for preserving the quality of that life after cancer as much as possible. As Dr. Rowland said to me, “[Clinicians] cannot wait five years to be thinking about sperm-banking or sparing fertility for young patients who wish to have a family, or avoiding drugs that may damage the lungs of world-class bikers or cause loss of feeling in the fingertips of blind patients who read Braille.”
The approaching 25th anniversary of the founding of NCCS begs us to reflect on how far cancer care has come in achieving its mission.
Do oncologists routinely discuss the risks of late effects associated with each treatment option, so their patients can help them weigh these risks when making treatment decisions?
Do oncologists routinely refer patients to nutritional counseling and physical rehabilitation whenever it might be useful?
Are we directing enough research dollars to studying the incidence of specific aftereffects, exploring factors that impact the risk of developing aftereffects, and developing measures to prevent, detect, and treat these aftereffects?
Money is an obstacle. Insurers think talk is cheap. Research sponsors want to cure cancer, not paresthesia.
Time constraints and heightened emotions are also obstacles. In offices and hospitals, clinicians are working day and night, caring for patients with complex and urgent medical problems due to active cancer. In labs, researchers are racing the clock, selflessly hoping to find treatments that can help patients who are running out of options and time. Such triage makes sense. Such compassion is noble.
In addition, the task of introducing the topic of late effects into treatment-decision consultations takes finesse and time. Even if done well, patients’ responses can run the gamut from not wanting to hear about late effects, to becoming too scared to proceed with life-saving treatments, to worrying that their physician is not being aggressive enough. It’s a risk many clinicians don’t want to take.
I won’t argue: The challenges remain great. But the time has come to address what is surely a silent epidemic of treatment-related subclinical disease in the burgeoning population of aging long-term survivors. It just doesn’t make sense to spend a fortune screening for recurrence, but not to screen for signs of serious aftereffects that might be more amenable to interventions.
We have reason for renewed hope. Today we have opportunities and tools that were unimaginable when the founders of NCCS hammered out their goals. For example, we can take a look at established nutrition and physical therapy rehab services prescribed by cardiologists, orthopedists, and other specialists. We can model new programs after the successful ones and/or find ways to integrate programs for survivors into established programs.
We can engage the power of computers—and patients’ ever-increasing computer savvy—to gather data on post-treatment issues. We can push for a culture that shares data without jeopardizing patients’ privacy.
We can keep in mind a lesson I learned from a girlfriend who was a few months pregnant when diagnosed with a sarcoma. She lost the baby. When pelvic irradiation was recommended, her radiation oncologist suggested pre-treatment oophoropexy. These efforts to preserve her fertility did more than save her from losing her fertility and grieving that loss while going through treatment. Proactively addressing post-treatment issues was a powerful way to communicate hope of survival.
As the adage goes, failing to plan is planning to fail. Comprehensive care of the cancer patient demands that the same expertise, energy, empathy, and support that help patients survive their cancer be used to set the stage for patients to enjoy the best possible life after cancer.