Caring for long-term survivors (LTSs) poses unique challenges. Unfortunately for me, I'd never explored how their reactions to new, treatable disease might differ from earlier go-rounds. If I had, my adjustment to my latest diagnosis would have gone more smoothly. With almost 20 percent of new cancers diagnosed in people who already had cancer, it's important to consider how prior cancer experiences may influence such patients' reactions and needs. Here's my story and what it taught me as a physician.
Routine bloodwork showed a slightly low platelet count that didn't resolve on follow-up. As a LTS who'd experienced false alarms, I knew it was too soon to panic. Yet worry flourished. Along with my academic knowledge of the worst possibilities, feared outcomes felt more possible because of my experiential knowledge of two truths: Life is unfair, and misfortune can happen to me. Months later, I was diagnosed with marrow failure due to aplastic anemia.
With confidence as a maven of adaptation (thanks to my history of recurrences and late effects), I expected a few weeks of distress followed by a smooth, healthy adjustment. Instead, a sense of doom and profound sadness persisted. Friends responded to my uncharacteristic darkness with references to my positive attitude and 32-year survivorship, insisting, "You've got this!"
"I've got this." I kept reassuring myself and others for months, convinced I'd turn the corner soon. Pushed by my family, a few counseling sessions enabled me to quickly regain my footing. The urge to cry disappeared. I felt like myself again except for a nagging disappointment and embarrassment about my rocky adjustment. Knowledge and experience were supposed to make things easier, right?
To help me figure out what had happened, I reflected on my earlier diagnoses. In the 1990s, my greatest fear was of dying. Or so I thought. My rabbi and I discussed spiritual aspects of death. A social worker helped me address worries about my children losing me. No discussions addressed end-of-life issues beyond ensuring my living will and medical directive were in order. As long as I had treatment options, I never thought about the dying process, even after losing co-survivor friends.
The faces of those friends paraded through my mind while processing the news of my aplastic anemia. "They felt this." Memories of Zoom celebrations of life and long-ago funerals led me to assume "It's my turn. This is what's going to get me."
That doomsaying fit with my well-worn answer to people wanting my recipe for beating the odds: superb care, medical knowledge, self-advocacy, and a gallon of good luck. The timing of my second recurrence alone counted as more than my fair share: A month later and I'd have undergone a bone marrow transplant instead of receiving monoclonals as the final patient enrolled in the very first Phase I trial. Logic dictated that my luck had run out. How sad.
When diagnosed the first time, I grieved my loss of health, a vague idea. This time, the losses of health opened the floodgates. I envisioned exhaustion, sleep disturbances, nausea, stress, and endless testing and waiting. Other LTSs said it well: "The first time, I feared the unknown. Now I fear the known."
Parenting flashbacks further unsettled me. My sixth grandbaby was on the way, and the other five (whom I saw regularly) were the same ages as my three children when I was first sick-all too young to make lasting memories of me. As I did decades ago, I began slipping into conversations references to the circle of life and my belief (and hope) that, "You can always feel Grammy's love, even when we're apart."
That I was "Grammy" highlighted a key difference this time around: I was old. Obituary pages were filled with people my age. Life-threatening illness felt ordinary and natural in a way that having cancer as a young mother never did. Perhaps my resignation reflected the narrowed options due to my age and late effects. Even with good options, was my body up for it? Before, I'd muster resilience for each challenge. Maybe with this latest diagnosis I had "hit the wall" like a marathoner at mile 18. For the first time ever, I wondered whether I was up for it.
I've always aspired to respond to new diagnoses like co-survivor friends who accepted their fate with grace and pursued treatments with a grateful, hopeful heart. It comforts me to know that other LTSs, too, felt doomed or ambivalent about pursuing treatments for a new diagnosis. Many also denied (or hid) their distress because of expectations of themselves and/or pressures to radiate strength and hope.
I believe what caused my sense of doom were the years of dodging bullets and burying friends, combined with a hardwired desire to make sense of the world. Physiologically, as with phantom-limb pain, the pattern of activated brain cells gave rise to a convincing illusion of "knowing" I was doomed. To find hope, I reminded myself that "feelings are not predictions" and conjured mental images of triumphant marathoners who, by putting one foot in front of the other, regain their wind and confidence.
It's important not to give too much weight to my survivorship. My emotions were already in high gear in anticipation of my son's wedding and the arrival of my grandson. The shortness of breath and bruising due to low counts felt threatening in a whole new way. Heck, we were still in the middle of a viral pandemic, with disheartening national and world news every day.
The key takeaway is that LTSs' reactions to a new diagnosis are influenced by their earlier survivorship. To guide and support them, consider mentioning that prior experiences may make the adjustment easier in certain ways and possibly more challenging in other ways. Reassure them that flashbacks and/or renewed grief about past losses are not uncommon. Encourage psychosocial support earlier, rather than later. By addressing LTSs' unique needs, you open opportunities to help them use their history of survivorship in healing ways.
WENDY S. HARPHAM, MD, FACP, is an internist, cancer survivor, and author. Her books include Healing Hope-Through and Beyond Cancer, as well as Diagnosis Cancer, After Cancer, When a Parent Has Cancer, and Only 10 Seconds to Care: Help and Hope for Busy Clinicians. She lectures on "Healthy Survivorship" and "Healing Hope." As she notes on her website (http://wendyharpham.com) and her blog (http://wendyharpham.com/blog/), her mission is to help others through the synergy of science and caring.