For those without a genetic component, the average risk of a new primary breast cancer in the other breast is 0.5 percent to 1 percent a year; taking tamoxifen can cut that risk in half.
“That's why as a rule we don't counsel women to take the other side off,” said Partridge.
But tamoxifen also poses a risk of uterine cancer, so it's critical for young adults to see a gynecologist to catch any potential early signs.
Finding support: Within the breast cancer community, some young women feel like outliers.
“It's very mom and family focused,” said Lamont, who is unmarried. “Most of the breast cancer survivors are literally 30, 40 years older than I am,” she said. Though they can be maternal and comforting, “they just have an entirely different set of concerns; their kids, husband, menopause. I'm like, ‘How many dates do I wait before I tell a guy my boobs are fake?' I'm just in a completely different mindset.”
Some nonprofits and hospitals are developing programs to meet the unique needs of young adults, especially as evidence mounts that this group suffers higher levels of social, emotional and physical stress with a cancer diagnosis, said Johnson.
Work or school issues: Young adults are usually in less stable jobs earlier in their career and therefore more at risk of being laid off, said Johnson. Or they are forced to drop out of school.
“The whole issue of balancing of family, work and cancer treatment is a huge issue for people with families. Even very sick moms do a lot of work.” Warrick, who had to postpone graduate school, had been promoted to a new position three weeks before she started chemotherapy.
“Taking the time off that I needed for treatment and recovery alongside still trying to feel like a valuable, productive contributing member of my team was a struggle,” she said.
Financial vulnerability: People diagnosed with all types of cancer are more than 21/2 times more likely to declare bankruptcy than those without cancer, according to a study from the Fred Hutchinson Cancer Research Center. The youngest people in the study had up to 10 times the bankruptcy rates as the oldest, perhaps because they are often diagnosed at a time when they are still paying off student loans, purchasing a home or starting a business. Older patients with cancer, conversely, typically have Medicare, Social Security benefits and more assets.
Guilt: Many cancer patients say it's easier to be the one battling the disease than it is to watch a loved one go through it. For Lamont, the guilt of putting her parents through the cancer diagnosis and treatment was “unexpected and overwhelming,” she said.
“They couldn't take any of the pain away — they just had to feel it too. More than anything, I would have liked to spare them that.” Patients who are parents also feel tremendous guilt if they can't care for their children in the same way as before the diagnosis. One 38-year-old mother of two children ages 6 and 3 summed up a common sentiment in a forum for young survivors: “It's hard to explain why I'm home but can't do certain things: why I can't take her to the bus, go shopping or let them sit on my lap,” she wrote.
Body image and relationships:For Lamont, an avid runner, treatment ushered in a complicated new relationship with her body, which had more or less always done what she wanted. Now, “My body is like a cheating lover I decided to give a second chance to,” she said. “I love it — I want to love it — but I can't trust it.”
Giannobile experienced “crazy changes” in her skin and estrogen levels.
“As a younger woman, it's a lot harder to go through a mastectomy and potentially losing your hair,” she said. “If you don't already have a companion or spouse, it might seem overwhelming to try to meet someone on top of all the treatments and surgeries. There are a lot of unknowns.”
Isolation caused by illness is perhaps more damaging for young adults because of their reliance on their peer group, said Johnson.
“An older adult can spend more time with their spouse or nuclear family; being sidelined due to an illness while the rest of the peer group moves forward can be really hard for people.”
It's also very hard on intimate relationships. Johnson was 27 and engaged at the time of diagnosis but the couple broke up.
“A serious illness is always hard on a marital relationship, but with teens and young adults, it's the rule, not the exception.” She was treated in 1996; four years later she met her husband. But during the experience, “I had no one my age I could talk to,” she said. “Even finding women 10 years close to my age was tremendously helpful, just to have a couple of peers I could laugh about this with.”