Headlines
As reported by The Hartford Courant, November 13, 2006.
Cancer Fight, Age 25
For a Young Person, the Disease's Problems Can Be Different; a New Initiative Tries to Address Issues of Self-image, Insurance - and Survival
By Hilary Waldman
Casey Decoteau didn't wear lipstick to her mastectomy - she's more a gloss kind of girl.
But she certainly felt a kinship with Geralyn Lucas, the 27-year-old woman who put a face on the alarming reality of life as a young adult with breast cancer in her recent book, "Why I Wore Lipstick to my Mastectomy."
Decoteau, 25, lives with her mother in Tolland and works at a day-care center. She was a college student with a dream of teaching elementary school when she found a lump in her breast in July.
Last month, Decoteau had a mastectomy, and found that along with her breast she had lost her place in the nation's 20-something culture, in which show-every-curve camisoles define the female form and sex is peddled everywhere from TV sitcoms to MySpace.com.
She no longer devours Cosmo magazine the way she used to. And even her favorite TV show, the sex-charged HBO series "Entourage," has become a reminder of the appeal she fears she left behind.
It's just so hard, Decoteau says, to feel beautiful anymore.
"I still have only one boob," Decoteau says. "I'm a notch below."
Cancer is a leading killer of young adults nationwide, but that group has been largely ignored by the medical establishment. Children with cancer are supported by their parents. Older adults most likely have established careers, families, and at least some degree of financial security. Young adults are a work in progress.
They may be starting out in jobs, but have no health insurance - sometimes by choice. With cancer on their record, is there any hope of getting health insurance in the future? Is life insurance out of reach?
They may have left the comfort of their parents' home, but are often still searching for their life's companion. How and when do you tell a date you have cancer? Some, such as Decoteau, can't imagine life without children, but are not ready for them yet.
"These patients often get lost," said Dr. Brandon Hayes-Lattin, medical director of the young adult oncology program at Oregon Health and Science University in Portland.
He wants that to change. Hayes-Lattin, an oncologist who had testicular cancer when he was 28, helped spearhead a new national initiative aimed at addressing the unique social and medical needs of young adults with cancer.
Over the weekend, the Livestrong Young Adult Alliance, a collaboration between the National Cancer Institute and the Lance Armstrong Foundation, met for the first time in Austin, Texas.
On the agenda was a discussion of how to implement recommendations from a report released last summer that identified a long list of possible reasons why cancer survival rates for young adults have not improved in the past 30 years, while the rates for children and older adults have gone up. One problem is that young adults are rarely enrolled in cancer research trials.
Another is that diagnosis can be delayed because nobody - neither the patient nor the doctor - can even imagine that a lump in the breast, or a pain in the ankle that lasts for months, could possibly be cancer in a person so young.
After Decoteau found a lump, she went to the University of Connecticut Health Center for an ultrasound. The technician told her confidently, "I'm going to prove to you that you don't have breast cancer." Breast cancer is very rare among young women, with fewer than 10 women in Connecticut between the ages of 20 and 29 diagnosed with the disease in a typical year.
She was at work Sept. 8 when UConn cancer surgeon Dr. Malini Iyer called with the news.
"She said some of the cells are cancer. She threw out the word chemo," Decoteau recalled. "This is what I heard: `You're not going to have kids, you're not going to have boobs, you're not going to have hair."
The prospect of losing her ability to have children scared her most.
Her boyfriend of three years accompanied her to see oncologist Dr. Susan H. Tannenbaum at UConn. She was going to need a mastectomy. But Tannenbaum said Decoteau could avoid chemotherapy with an alternative treatment usually effective in post-menopausal women.
Tannenbaum and Decoteau agreed that after the mastectomy Decoteau would be put into premature menopause with monthly injections to suppress her ovaries. The regimen also involved taking the estrogen-suppressing drug Tamoxifin for five years.
The treatment will delay her ability to start a family - but may not destroy it. Decoteau was relieved.
"I love children," she said.
After the operation, Decoteau did not want to look at the empty spot on her chest. For days, she didn't even want to take a shower. Her friends helped her order a prosthesis and came to her house the day she came home from the hospital to do her hair and makeup.
It took about a month before Decoteau could pick up the "Why I Wore Lipstick" book. When she did, the author's raw and sometimes funny account of her breast cancer journey hit a nerve. But it gives her hope.
"She's saying things that I'm thinking and feeling and some things I haven't even thought about," Decoteau said.
Slowly, Decoteau is getting used to her new reality, but it can be frustrating. She was down to her last six classes at Manchester Community College this fall when she had to drop out, further delaying her teaching plans. Her employer has been sympathetic and she returned to work last week. Her family and friends have stood by her. And not a day goes by when her boyfriend, Paul, doesn't tell Casey that she's beautiful.
But as with other young people with cancer, Decoteau's experience has been isolating. She has found some kinship at websites for young cancer survivors, but at home, at work and even in the cancer center waiting room, where older women line the seats around her, she is alone.
The night of her diagnosis, Decoteau and her mom had tickets to a Boston Red Sox game at Fenway Park. Her mom insisted she go.
As Decoteau walked through the park's crowded catacombs lined with hot dog and beer vendors, she wondered if she looked different, if people who looked at her might know she had breast cancer.
"You walk around and I thought, I wonder if people know," she said.
"I felt like there must be something on me that says, `I have breast cancer.'"