Article

Young survivors struggle to get comfortable in our post-cancer skin

Author(s):

Emily Cousins

I went skinny dipping last month. That might not seem worthy of a news flash, but the fact that I uncovered my post-lumpectomy chest in front of people who were not medical professionals is groundbreaking.I used to be comfortable in my skin, but getting diagnosed with breast cancer at the age of 32 changed that. Multiple surgeries left me with angry scars and an altered shape, while radiation made me unable to tolerate underwire. Clothes that used to fit no longer did. Compliments my husband paid no longer rang true to me, though I never doubted his kind intentions. And situations that were once routine--wearing form-fitting clothes, shopping for a bathing suit, changing in front of a friend--now made me self-conscious.I knew I was lucky to be alive, but I wished I didn't have to trade in my confidence to regain my health.No one welcomes the makeovers cancer provides, but young survivors can have an especially hard time adjusting to these abrupt changes. We enter treatment at the peak of physical fitness, and we are shocked to discover our bodies may never look or feel the same.Page Tolbert, a former oncology social worker at Memorial Sloan-Kettering, says the physical alterations can trigger emotional ones as well. "Every single time that I have been in a room with young cancer survivors--every single time, I can't think of an exception--I hear two words: damaged goods," explains the middle-aged Tolbert. "At my age, everyone feels like damaged goods. But to be young and feel as if you are not all that you should be or that pieces of you will never be back in place, it is a terrible feeling."Now we attract a kind of attention we never wanted. One survivor I know had three surgeries to treat testicular cancer, and now he has 24 inches of scar tissue lining his torso. "When I go to the beach, I look like Frankenstein," he said. "I went to a bachelor party at the beach. I didn't want people to think: 'Poor Dave, he had cancer.' I just wanted to be one of the guys hanging out. I was able to drink enough beer to get past it."Even when we aren't pulling off our shirts, we still think people can see the harm done by cancer. My friend Kathleen was 38 when she had a mastectomy and reconstruction with a saline implant, and now she constantly questions whether people notice the difference. "I was in yoga class this morning, and one boob is sagging to the side and one is standing up. I can't help think, 'Can everyone else tell?'"It's especially painful when we feel damaged in places that contribute to our sense of masculinity or femininity. Alex got diagnosed with testicular cancer in his early thirties. He had one testicle removed and decided not to get a prosthetic because he didn't want to undergo another complicated procedure. But two years later, he thought a prosthetic might have helped with self-esteem, "which took a hit," he says. "It is emasculating. It makes you feel less like a man. I still have issues with that in terms of self image."Kathleen told me, "Now I look down at myself and see a weirdly put together nipple somebody tried their best to assemble from skin. My doctor said, 'To be honest, we can make you look good in a bra or bathing suit.' But you get naked with your husband, and I doubted him and his reaction. My husband would say 'It's great. You look wonderful. You are healthy. It's not what I focus on.' But I needed convincing."Many of us need that kind of convincing. Some get it through the reassurances of loved ones. Some get it by hooking up with new partners. Some get it from a new appreciation for what our bodies can endure. Amee, who got breast cancer at 27 said, "You learn just how amazing your body is and that's its capable of more than you ever imagined."For me it's been a matter of time. My scars don't upset me as much as they used to, because I feel safer in my prognosis. I have also seen how positive forces like childbirth have altered my body as well. While I haven't regained my pre-cancer élan, I do see more skinny dipping in my future.Emily Cousins blogs about young survivor issues at Stupid Cancer Blog and Huffington Post. She is also writing a book called Back from Cancerland about life after cancer for people in their 20s and 30s.

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