By Julie Deardorff, Tribune Newspapers
7:33 PM EDT, September 26, 2013
Katherine Warrick was 31 when she was blindsided by an aggressive form of breast cancer. Like many young adults, she simply had no time for it: She was a newlywed, finishing her first year of graduate school and working full time as a social worker.
Cancer treatment forced Warrick to take two semesters off from her graduate program. Though newly promoted at work, she worried she wasn't pulling her weight. Now she wonders whether she'll be able to have children. And if she does, will she live long enough to see them grow up?
Breast cancer steals something from everyone, regardless of age. But when you're younger than 40, the disease threatens key milestones and independence during the prime of life, adding to the burden of the illness.
“I thought treatment would be a phase; once it was done I could go back to the way it was,” said Warrick, who went through 18 rounds of chemo, four surgeries and will now take a daily maintenance drug for the next five years. “But cancer takes your old ‘normal' and gives you this new one. Thanks, but no thanks. I liked my old ‘normal' just fine.”
Breast cancer is relatively rare in young women: In the U.S., about 7 percent of women with breast cancer are diagnosed before they've hit their 40th birthday.
But when it does strike, young women often grapple with distinct concerns and have lower survival rates than their older counterparts, due to differences in the tumors, biology and stage of life.
Below, we look at why the incidence of advanced late-stage breast cancer may be on the rise among younger women and at the unique challenges these women face — everything from treatments that can compromise fertility to an increased risk of secondary cancers.
Looking at age
Although breast cancer risk increases with age, the prognosis tends to be worse for younger patients, says pediatric oncologist Rebecca Johnson, medical director of the Adolescent and Young Adult oncology program at Seattle Children's Hospital.
During her 40th year of life, a woman has a 1 in 173 chance of being diagnosed with breast cancer, Johnson said, though the incidence varies with race and ethnicity. Black women younger than 35 have more than twice the incidence of invasive breast cancer and three times the breast cancer mortality of young white women, several studies show.
Johnson's latest research, meanwhile, shows another disturbing trend: a small but statistically significant increase in the incidence of advanced breast cancer for women 25 to 38 without a corresponding increase in older women. (The researchers did not find a rise in earlier-stage breast cancer in young adults.)
The study, published in the February issue of The Journal of the American Medical Association, showed the number of young adult women getting metastatic breast cancer has nearly doubled since the 1970's.
“It used to be 4 percent, now it's 7 percent,” she said. “It's still thankfully a small increase but we didn't find a single risk factor to explain it.”
Estrogen-sensitive cancers appear to make up the bulk of the increase, which is “comparatively fortunate,” the Journal authors note, because those cancers are somewhat more responsive to treatment and have longer average survival rates.
But still, less than one-third of women with advanced or metastatic disease survive at least five years after diagnosis. Women with early stage disease — where the cancer hasn't spread — have a more than 80 percent chance of survival if they are older. If they are younger than 40 however, they have a 60 percent chance, Johnson said.
These odds hit close to home for Johnson, who was 27 and beginning the second year of her medical residency when she was diagnosed with breast cancer. Treatment included chemotherapy and a mastectomy. This August, at age 44, doctors detected a slightly different type of cancer in her other breast. In September she underwent a second mastectomy.
“(The first time,) my doctor said ‘We don't know why, but young women with breast cancer don't do as well,'” said Johnson. “Seventeen years later, we still don't really know why young women have a greater chance of dying of early stage breast cancer than older women.”
Still, while Johnson's study is “provocative” and warrants further work, one expert said it could also be more of a reflection of how doctors are looking at advanced disease and less that things are getting worse for young women.
“What's not completely clear is whether it's a true new problem or whether it's a result of better imaging or screening for metastasis and newer technologies,” said Dr. Ann Partridge, founder and director of the Program for Young Women with Breast Cancer and director of the Adult Survivorship Program at the Dana-Farber Cancer Institute. “Are we're looking harder in young women or is there some biological phenomenon going on?
“Young women still have lower survival rates than older women — those in their 40s have the best survival — so something is going on with the very young that we're trying to sort out.”
In fact, the discrepancy in survival between younger and older women has become worse over the past 25 years, according to federal data. One possible explanation is that most of therapeutic efforts have targeted middle-aged and older women, and not young women whose cancers may require a different treatment approach.
The good news, said Partridge, is that overall survival is improving among young women.
When to screen
Experts disagree on when screening should begin; some guidelines say at age 40. The U.S. Preventive Services Task Force recommends that women between age 50 and 74 get a mammogram every other year, with the option to start earlier if a woman desires.
Since women younger than 40 aren't routinely screened, their cancer can be missed for months or even years. But, Johnson said, there's also no evidence showing that screening before age 40 would help younger women who are not at high risk and have no symptoms.
Instead, she said, women shouldn't just assume they are “too young” to get cancer. If they notice a lump, pain or other change, they should see a doctor.
Michelle Lamont, a New York City writer and blogger, was diagnosed in December at age 25, four months after another doctor waved off her concern, calling it a cyst.
“I was totally at ease while this cancer was growing inside of me,” she said. “But those four months could have been the difference between life and death.”
Though Johnson's study didn't look at the reasons for the potential increase, one theory to explore looks at whether overeating and lack of exercise are driving up early-life metastatic breast cancer rates, Johnson said. The use of hormonal birth control could play a role, but the risk level goes back to normal about a decade after going off the drugs, according to the National Cancer Institute.
Since the change has been so marked over just a few decades, “We think it's likely related to something external, a modifiable lifestyle-related risk factor or perhaps an environmental toxic exposure, but we don't know what,” Johnson said.
About half of breast cancer cases in all age groups combined are due to known risk factors — genes, reproductive patterns and socioeconomic status — which means environmental factors are likely also related, according to the Centers for Disease Control and Prevention.
Ionizing radiation or X-rays have been clearly linked to breast cancer. Since medical diagnostic X-rays are an increasingly common source of radiation they should only be given when medically necessary, according to an Institute of Medicine committee on breast cancer and the environment.
The widescale use of carcinogenic chemicals tracks tightly with the incidence of breast and other cancers, but so far there's no solid causal evidence in human studies, said sociologist and filmmaker Sabrina McCormick, the author of “No Family History: The Environmental Links to Breast Cancer.”
One growing area of research looks at whether the timing of environmental exposure influences breast cancer risk later in life. Certain time periods are particularly important: in utero, puberty, pregnancy and post menopausal stages of life — when women are particularly vulnerable to environmental causes, according to the National Institute of Environmental Health Sciences.
During early childhood and adolescence, the breast tissue is developing and maturing. Recent studies suggest environmental exposures such as certain chemicals, diet and social factors, during these critical stages of development may affect breast cancer risk later in life, the institute said.
Polycyclic aromatic hydrocarbons, found in air pollution, have been tied to an increase in breast cancer tumors, said McCormick, an associate professor at School of Public Health and Health Services at The George Washington University. Once cancer treatment is over, “it's always good to reduce exposure to carcinogenic chemicals,” she said. “Many accumulate in the body.”
Body fat can also absorb chemicals found in pesticides, food packaging and consumer products that can act as endocrine disrupters. These disrupters concern researchers because they are commonly found in the environment and can mimic or block hormones and disrupt the body's normal functions.
Facing breast cancer
before age 40
Studies have repeatedly shown that younger women have more difficulty adjusting to a diagnosis of breast cancer, in part because the disease and treatment impacts nearly every aspect of their lives, including their evolving identity.
“Cancer stole my independence, my youth, my fun, my fertility, my body, my beauty and my ignorance of death and mortality,” said Lamont. “I used to feel invincible; now I am more aware than ever that my life will end one day.”
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.
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.”
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