For women in their 20s and 30s, breast cancer can be a lonely place.
Younger women – who are often still dating, finishing school, building careers or raising young children – have vastly different emotional, physical, financial and medical needs than older women with breast cancer. They’re typically hit with a far more aggressive disease, one that’s more likely to metastasize and strikes at a more vulnerable stage in life.
“In your 20s and 30s, you’re not expecting a diagnosis of breast cancer. There’s the loss of innocence and confronting your mortality at a younger age,” said Michelle Esser, senior program manager for research and advocacy with Young Survival Coalition, a nonprofit group that supports women under 40 diagnosed with breast cancer. “Most haven’t had a friend going through this, so it’s isolating as well.”
Each year, an estimated 12,000-plus women under 40 are diagnosed with breast cancer, according to the American Cancer Society. Too young for mammograms, they’re often diagnosed at a later stage, affecting long-term survival outcomes and requiring more aggressive treatments.
While new breast cancer diagnoses have stayed relatively flat among all U.S. women in the past decade, that’s not true for women ages 25 to 39. Since 1976, that group has seen a steady increase – roughly 2 percent a year – in advanced breast cancer cases (in which the cancer has spread to other organs), according to a recent study by the University of Washington and Oregon Health and Science University in Portland. It found 250 cases of metastatic breast cancer in that age group in 1976, compared with about 800 cases a year in 2008-09.
“The reality is that at this point we do not have the facts to answer the question as to cause,” said J. Leonard Lichtenfeld, deputy chief medical officer for the American Cancer Society, in a statement after the study was released.
That and other studies have fueled calls for more research – and more awareness – into the causes and treatments of breast cancer in younger women. Two years ago, the Young Survival Coalition convened breast cancer researchers, oncologists and patients to develop an extensive list of research priorities, from causes to cures.
Next month, the coalition is to host its first-ever California symposium in Long Beach for young women with breast cancer and their families, as well as a larger, three-day March gathering in Oakland.
‘Breast Cancer Island’
When Michelle Barry of Sacramento was diagnosed at age 41, the hospital audiologist and mother of three children found few women at work or moms at her kids’ schools who could relate.
“You’re still trying to function in the workplace. You’re trying to get your children through very busy days of school activities. And you’re feeling so alone because there aren’t very many young survivors who ‘get’ what you’re going through,” said Barry, who faced the additional hurdle of having lost her husband five years before cancer intruded on her life.
Four years later, she’s rebounded, joining regular Young Survival Coalition coffee meetups in Sacramento with “other people like me.” She likens the gathering to a “Breast Cancer Island,” a place “where everybody speaks your language and understands the culture.”
“It’s dedicated time to talk and process some of the feelings you still have,” Barry said. “Cancer never goes too far away. It’s always there below the surface.”
Over the weekend, she was in Ventura for her fourth annual Tour de Pink, a 200-mile bike ride along the California coastline with fellow survivors, friends and family members.
Because the cancers are rare, doctors can often overlook them. When 33-year-old Melanie Bean felt a lump in her breast that she knew “just wasn’t right,” her primary care physician, a woman, said it didn’t feel like breast cancer and an ultrasound wasn’t conclusive. Six months passed before the Sacramento resident was referred to a surgeon for a biopsy, which found her Stage 3 triple-negative cancer.
Physicians often “aren’t very aggressive” in their treatment when young women come in with a breast lump, said Dr. Ernie Bodai, a former breast cancer surgeon at Kaiser Permanente in Sacramento, who now runs Kaiser’s post-recovery Breast Cancer Survivorship Institute. Too often, he said, doctors treat a lump as a benign growth such as a cyst or a fibroadenoma, a noncancerous tumor commonly found in women under 30.
During his three decades as a breast cancer surgeon, Bodai saw the number of women in their 20s and 30s steadily increase to about 15 percent of his patients. He still vividly remembers a 16-year-old who was pregnant when her breast cancer was detected. Fueled by pregnancy hormones, her cancer had already spread throughout her body. Doctors performed a cesarean section to save her baby, but the teen died of her disease, Bodai said, calling it “one of the worst days of my life.”
12,150 Estimated number of new breast cancer diagnoses in 2016 among U.S. women age 40 or younger
But he also remembers plenty of other patients, young women diagnosed in their early 20s, who went through a mastectomy, chemotherapy and breast reconstruction and went on to marry, have children and today lead healthy lives.
He and others point to likely causes of breast cancer in younger women: genetics, earlier menstrual periods (as young as 8 or 9), later-age pregnancies and hormone-laden meats and dairy products in American diets. Those factors can expose them to estrogen and hormones for years longer than older women, whose periods typically started later in life and who typically had babies at younger ages.
Having seen so many young women diagnosed with breast cancer, Bodai is openly critical of the American Cancer Society’s recommendation that women with low risk and no symptoms wait until age 45 to get their first mammogram.
“It’s insane” to wait, he said bluntly, adding that even women with no risk factors should get a baseline mammogram at age 35.
“The important message for young ladies is to be very vigilant. Do a breast self-exam starting at age 20,” advised Bodai, who said about 20 percent of his 15,000 surgery patients found their own breast cancer lumps, some despite mammogram tests coming back negative. Bodai, who pioneered the U.S. breast cancer postage stamp, also urged women to seek out clinical trials.
Beyond health, younger women face different financial, emotional and physical stresses.
They may be single or haven’t built up financial resources to afford lengthy time off work for treatments. Unlike older women, they may not have a pension or a spouse to help out financially. Some need help from parents or other family members to cover medical costs.
Fertility is another fraught area. Chemotherapy usually halts women’s periods, launching them into temporary, early menopause. After surgery, some young women are placed on tamoxifen, which shuts down their ovaries, often for five or more years. That combination can significantly narrow their window for having children, unless they harvest and bank eggs for future pregnancies.
Sexual dysfunction is a topic that younger women may be unprepared for, said surgeons and breast cancer experts. Going through premature menopause, many young women experience vaginal dryness that inhibits their sexual life. They also deal with self-image issues after breast removal, hair loss, lack of libido, weight gain and other unwelcome side effects.
“All of these contribute to diminished self-esteem and self body image,” Bodai said.
Another aspect that’s often overlooked is the impact on partners, boyfriends or spouses who can be unprepared for the emotional and physical burdens of a partner’s illness. At Young Survival Coalition conferences, these “co-survivors” attend sessions on how to cope with feeling “sad, alone, even overwhelmed” by what a loved one is going through.
Melanie Bean’s husband juggled supporting his wife, maintaining his job and raising their then-3-year-old daughter. At the time, they didn’t communicate with each other about how traumatized they felt by the frightening diagnosis and the grueling treatments and recovery.
“We didn’t want to burden each other,” said Bean, a Sacramento City Unified School District language specialist who had to take a year off work for surgeries. “He was taking care of me but also worrying, ‘What do I do if my wife dies?’ ”
As a couple, Mary and Pasquale Cignarella have been through the peaks and valleys of cancer, since her first diagnosis at age 33, when her daughters were 4 and 18 months old. The Elk Grove mother had a double mastectomy, chemotherapy, radiation and reconstruction, and was on tamoxifen for seven years, which stopped her monthly periods.
“Breast cancer affects the intimacy of your relationship, and the menopause adds another layer that can be difficult and stressful,” said Mary Cignarella, a UC Davis pediatric nurse. “It changes your relationship. You have to find a new way to be intimate and be a couple. But I had someone willing to be on that journey with me.”
Pasquale Cignarella, a Sacramento County sheriff’s deputy, said his wife’s breast cancer was “definitely an adjustment” as a husband, “the person who loves her unconditionally.”
“It was a little hard at first. I needed to accept she’s still the same person. Physically there might be some differences, but the overall person is still there. During those emotional times, that’s what I focused on. … If anything, it’s made our marriage stronger.”
Last summer, her breast cancer metastasized to her liver; she’s been through chemotherapy and is receiving regular infusions of cancer-fighting maintenance drugs.
“When you finish your treatment, the fear of it coming back almost paralyzes you,” she said. “But I finally had a revelation: You know what? If it comes back, I’m going to do what I did the first time: I’m going to fight it.”
Young women with breast cancer
Occurrence: Each year, more approximately 12,150 women under age 40 are diagnosed with breast cancer. That’s a small number compared with the estimated 246,600 diagnoses this year in women of all ages, but the disease is typically more aggressive and more likely to metastasize in younger patients.
Meetups: Monthly meetups of young women with breast cancer, newly diagnosed or post-treatment, are held throughout California, including in Sacramento, Davis and Rocklin. They’re sponsored by the national Young Survival Coalition.
Conferences: Young Survival Coalition is hosting its first-ever California symposium on Nov. 5 in Long Beach, with sessions for survivors and their partners. A larger conference will be held March 10-12 in Oakland. Details are at www.youngsurvival.org.
“Pushing Past Cancer,” a UC Davis Medical Center event for young adults (ages 18 to 40) with all types of cancer, will be held Nov. 5 from 9:30 a.m. to 5 p.m. Sessions will cover physical and emotional wellness, sex and fertility and “social media smarts” and includes a panel of young cancer survivors. It’s free but requires registration by Nov. 3 through the UC Davis Comprehensive Cancer Center.
Clinical trials: BreastCancerTrials.org, a San Francisco-based nonprofit group, matches U.S. women with clinical trials, based on their type of breast cancer, age and personal health history. Started in 2005 with the help of doctors from the University of California’s San Francisco and Davis campuses, the free service lists relevant clinical trials and can contact the sponsors on a patient’s behalf.