I remember the sensation clearly. I felt sheepish walking into the room full of young cancer survivors. We had come to the Post Treatment Resource Program at Memorial Sloan Kettering to talk about life after cancer, but I wondered if I really belonged here. I had been diagnosed with breast cancer at the age of thirty-two, but that was over two years ago. I imagined the other people in the room where more recent graduates of the cancer experience, and they might wonder what this old-timer was doing here. Why did I still need a cancer support group? Shouldn’t I be over it by now?
The truth is I wasn’t close to being over cancer. In the first years after treatment, cancer still made its presence known in my marriage, my work life, and my trouble seeing past the next scan.
It turns out I wasn’t alone, and that’s why the room at Sloan Kettering was crowded with survivors who were two, three, even four years out of treatment.
Experts are beginning to recognize that the shock of cancer doesn’t end when we graduate out of the port. Page Tolbert, a former social worker at the Post Treatment Resource Program at Memorial Sloan Kettering, explains, “People think of getting a cancer diagnosis as a crisis. Sometimes the treatment itself is a crisis. But people don’t often acknowledge that the end of treatment can be a crisis as well.”
Tolbert’s insights were confirmed in a recent study featured in the Wall Street Journal this week. A survey of 1,032 breast cancer patients released by the Cancer Support Community revealed the persistence of cancer’s impact long after treatment ends. Almost 90 percent of those surveyed said they had a least one physical, psychological, or social problem, even though they average about 5.6 years since diagnosis.
A young survivor featured in the piece, Carie Capossela said, “The second-hardest phase—after the initial diagnosis—is the minute your treatment ends. The reality sets in that you have to live with this the rest of your life and the safety net is gone. That’s when you really freak out.”
The survey included women of all ages, but oncology social workers have noticed that the long shadow cast by cancer is especially jarring for young adults—of both genders and all diagnoses.
Young survivors tend to summon all our strength to sprint through treatment. We are in such a hurry to regain our “normal” lives as soon as the stubble grows back on our heads that we are caught off guard by the intensity of emotions that hit us as soon as we slow down.
One survivors I spoke to who got breast cancer at 27, explained, “I underestimated life after treatment and thought things were going to be just like they were before my cancer, but I’m finding out it’s a lot tougher than I expected.”
The expectations that were suspended while we were sick are reactivated: time to get back to work, time to date again, time to stop being afraid, time to move on. There is a prevailing idea that cancer survivors should be happy to be alive and embrace life. It is true, most of us are deeply grateful. But we are also swamped by the conflicting feelings that cancer leaves in its wake. One survivor described it in an essay in the New York Times:
I am doing my best these days to stick to the script in which the cancer patient ‘bounces back’ after successful treatment–not only bounces back but is returned to her family and friends in an improved version, a person flooded with gratitude and a refreshed love for life–but I am not doing so with much conviction. I have learned that just as you are beginning to realize you have had this dreadful disease, everyone else is starting to forget it. It is like arriving at the end of an awful trip, craving the embrace of your loved ones and finding they have all gone somewhere else. The party, if you could call it that, is over.
There is no way to avoid the pain and confusion that descends at the end of treatment. Yet knowing you are not alone can help you cope. Almost all the survivors I have spoken to said the best remedy was connecting with other young survivors.
One survivor of nasal cancer described it like this: “After treatment, you feel like you are an alien. Then you see another survivor, and you think, ‘Oh, that is one of my own.’”
That’s what I felt like when I found the post-treatment group at Sloan Kettering. You can find it here at i2y.
