Women also have a higher risk of developing cancer that spreads throughout the body when they are diagnosed at a younger age and subsequently receive more aggressive therapy, Johnson's research has shown.
Yet the under 40-crowd is less likely to comply with treatment due to side effects, which can be more severe for younger women than older ones, some research, including Partridge's, suggests. The treatments, often harsher out of necessity, also can potentially impact a woman's menstrual cycle and thus her fertility and dreams of having children.
Finding community can also be difficult, due to the general lack of information about the risks and the issues facing younger cancer patients and a shortage of peer group support and resources, said Partridge, an associate professor of medicine at Harvard Medical School.
“The milestones people go through in adolescence and young adulthood are brightly defined, added Johnson, an assistant professor of pediatrics at the University of Washington School of Medicine. Failing to meet these traditional markers “can cause tremendous anxiety and grief; they feel they aren't doing the things they are supposed to and this sets them back from their peer group,” she said.
Though a cancer diagnosis is distressing at any age, it's particularly challenging for young women. Here's a look at some of the quandaries they face.
Treatment induced infertility:
Fertility preservation is one of the most pressing issues for young adults, according to Partridge's research.
More than half of the women in a web-based survey said they had “substantial concern” at diagnosis about fertility after treatment; 29 percent reported that fertility worries influenced their treatment decisions.
Yet women lack information about options. In a separate study published in the journal Cancer, researchers found only 61 percent of women received counseling on the fertility risks of cancer treatment from their doctors or other providers. Overall, only 4 percent of women in the study pursued fertility preservation.
Chemotherapy, which is used to reduce the risk of cancer recurrence in young women, often triggers menopause.
“Even though women younger than 40 are more likely to have their periods continue after chemotherapy compared with older women, their ovaries are often damaged at least to some degree,” said Partridge.
Taking the drug tamoxifen as part of treatment or follow-up treatment has a price. It doesn't damage the ovaries directly like chemotherapy, but it is generally recommended for five to 10 years. During that time, women shouldn't become pregnant because tamoxifen can cause birth defects, hence “shortening or closing the childbearing window for many women,” said Partridge.
Some women choose to take less than the standard recommended course of tamoxifen in order to get pregnant earlier, and this may compromise their cancer outcomes. It's a difficult dilemma.
Lindsay Giannobile was 28 when she was diagnosed with Stage 3 breast cancer. She had her embryos frozen a week before she started chemotherapy. She had hoped to carry the baby after treatment, but her cancer quickly spread to her back, ribs and hip. She and her husband, Tony, were able to find a surrogate, and their son Rocco is now 5 months old.
“Rocco has definitely given us another push and reason to fight,” said Tony.
Like many new moms diagnosed with cancer, Giannobile worries she may not live to see Rocco, grow up. Though it was difficult to start, she now keeps a memory book filled with photos and writing for him.
“Tony and are also taking a lot of videos,” she said. “I always think if I'm not here, I'd like Rocco to see the way I light up when he's around,” she said.
Secondary cancer risk: Women diagnosed with breast cancer before age 40 have triple the risk of developing a second primary cancer and a 41/2-fold increased risk of a subsequent breast cancer, according to the American Cancer Society. Much depends on a person's genetic background, said Johnson.
“In certain families, cancer runs very strong,” she said. “There's also a chance of a second cancer from chemotherapy, radiation; chemo in particular can predispose someone to cancer, but it's a small risk,” said Johnson.
If there's a genetic component, it's more likely that a woman will develop a new breast cancer in her other breast in her lifetime, compared to women who don't have susceptible genes, said Partridge. If heredity is a factor, the risk of a new primary cancer in the opposite breast is 20 percent over the next five years, she said.