First-Year Survivorship

Survivorship can feel like a game of cancer whack-a-mole: pound one issue flat and another pops up, often where you weren’t even looking.
February 2017 Vol 3 No 1
Dan Dean
Chicago, Illinois
Non-Hodgkin lymphoma survivor

Survivorship can feel like a game of cancer whack-a-mole: pound one issue flat and another pops up, often where you weren’t even looking.

Adolescents and young adults (AYAs) recovering from cancer treatment struggle with the same issues as their peers: they are figuring out who they are in the “quarter-life crisis.” They are redefining established family relationships and exploring new, intimate ones. AYAs navigate school and the careers that follow, testing their hopes and dreams against the mundane realities of nabbing a steady paycheck and ponying up the monthly rent.

Difficult Transitions

Other aspects of reality seep in as well, such as the stark reality of a cancer diagnosis, which affects roughly 70,000 AYAs every year. Careers and the independence of young adults go off the rails in a heartbeat with such a diagnosis. Self-esteem and self-confidence take nosedives. Conversations about hopes and dreams transition to fertility, finances, and friends—all of which can be erased by cancer treatment. It feels as if normal life has gone on strike.

“Cancer stops AYAs in their tracks. It’s a pause in their lives and maybe a regression,” says Amelia Baffa, Advanced Clinical Nurse at the Angie Fowler Adolescent & Young Adult Cancer Institute at University Hospitals in Cleveland. “Young adults sometimes move back home to be taken care of, and independent individuals become more dependent,” she says.

After the last drop of chemo or the final zap of radiation, AYAs enter the wait-and-see period. Done (maybe) with treatment and the follow-up appointment with the oncologist in the distance, AYAs have to find their sea legs in a new normal.

As Ms. Baffa describes it, the process can be “jarringly isolating.” The support of oncologists, nurses, and social workers—ever-present during treatment—appears now only at the next check-up. As hair and weight return to their shape before cancer, family and friends may expect (not always patiently) that the survivor’s life will too.

Not Out of the Woods Yet

But cancer concerns continue. Will it come back? Testicular cancer survivor Jonathan S., age 33 and living in Los Angeles, says, “Within the first year in particular, the thought of recurrence was everywhere in my mind. I had a lot of check-ups, and every time I went back to the hospital, I relived the trauma of ‘you have cancer.’”

Jessie K., age 29, from Raleigh, NC, is about 1 year after treatment for Hodgkin lymphoma. She experienced the same kind of post-traumatic stress disorder going back for follow-up appointments. She says, “I’m trying to move forward with my life by going back to school, but I worry about moving away from my medical team after I graduate. I don’t want that anxiety to control my life, but it’s there.”

The fears of cancer recurrence and of losing one’s support group are not the only anxieties that may trouble a survivor in the first year.

“I worry about getting a cold. For the normal person, it’s a few days of irritation, but it could land me in the hospital,” says Cleveland native Ali, age 19, who is several months after a bone marrow transplant for acute myeloid leukemia. “I’m trying to get strong enough to live normally again.”

A New Normal

As time passes and survivors’ bodies become stronger, such fears ease, giving way to some of the broader—and less tangible—concerns that come with treatment. The anger and sadness of life interrupted usually dissipates, but about 25% of AYAs experience depression, according to the Dana-Farber Cancer Institute in Boston. Professional therapy helped Jonathan S., and others have found ways to normalize the experience with fellow survivors and with patients in organizations such as First Descents, True North Treks, and Epic Experience.

Says Jessie, “I was seeing a therapist after treatment, because I was not happy with any part of my life. But when I was kayaking with Epic Experience, I stopped feeling like an outlier. Sharing a challenging trek through gorgeous country with other survivors definitely helped my recovery.”

Fitting the cancer experience into a life moving forward doesn’t always happen in year 1 of survivorship. Often, there is a yearning for a return to a person’s life before cancer—to resume friendships, restart school, pick a career back up. But what used to work sometimes, no longer does in a survivor’s new normal.

“In almost every situation, survivors experience some kind of existential crisis,” says Ms. Baffa. “If it’s not a spiritual reconsideration, it could be figuring out what their life purpose is. I remember a trucker who was so pissed about not being able to get on the road within the first year of survivorship. Eventually, he got there—and realized it wasn’t what he wanted to do. And he was so happy to have discovered that! I see that situation play out time and time again.”

Jonathan S. has had a similar experience. His worry about cancer recurrence during year 1 of survivorship has receded, and he now credits cancer’s existential jolt with letting him find a new vocation he loves—in the complex and expanding development of battery technology. “What I wanted from my career took a little while to figure out, but my work is more satisfying now than it was before treatment,” says Jonathan.

The first year ends in a new life, which is most often good.

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Last modified: October 14, 2017

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