Sujata Santiago was just 34 in January when her gynecologist noticed a lump on her right breast. After a mammogram, biopsy and ultrasound, she had her diagnosis in March: stage II invasive ductal carcinoma.
“When I was getting the treatment, I was definitely the youngest one,” she said. “You know, usually the daughters would come with the mothers, but it’s my mother who was there with me.”
Breast cancer in women under 40 is still considered very uncommon — it accounts for only 5 to 7 percent of all breast cancers — but about 13,000 women under 40 will be diagnosed this year nationwide.
While relatively rare, young breast cancer patients and survivors are more likely to face certain obstacles: a diagnosis at a more advanced stage, a more aggressive cancer, fewer support systems and derailed family planning.
Never miss a local story.
Younger women diagnosed with breast cancer are also more likely than their older counterparts to have hereditary cancers caused by a genetic mutation, the most common being the BRCA1 and BRCA2 gene mutations. That makes sense given how cancers develop, says Dr. Elisa Krill-Jackson, an oncologist at Mount Sinai Medical Center in Miami Beach and director of its genetic testing program.
“The genesis of cancer is that with time and with cell division, cells make mistakes,” she said. “If your body carries an abnormality that puts it at risk for making mistakes when cells divide, you’re going to see breast cancer at a younger age, because your cells are more predisposed to doing it.”
Hereditary breast cancers can be “somewhat” more aggressive, says Krill-Jackson, and testing younger women for those mutations is crucial for determining appropriate treatment. Most known genetic mutations that cause breast cancer put patients at a higher risk for other cancers. As such, a young woman diagnosed with a hereditary breast cancer sometimes has to choose between risk-reducing surgeries or gambling on getting cancer again. And that’s if the risk they carry can be reduced with further surgeries — many cancers can only be screened for.
Natalia Munoz was diagnosed in 2008 at age 32. After a double mastectomy, a battery of chemotherapy and radiation, and participation in a clinical trial for the experimental drug Avastin, Munoz has beaten her stage three cancer and even had a second child.
But she has a BRCA1 mutation, and this October, she’ll have her ovaries removed to reduce her risk of developing ovarian cancer. The BRCA mutation puts her at a heightened risk.
“I’m 38, so imagine. It is what it is,” she said.
Finding out that a genetic mutation is to blame for one’s cancer also means that family members — including children — could carry that risk.
“The flip side is that you can take steps to prevent cancers in those family members and save lives,” said Krill-Jackson.
Lainey Kieffer was diagnosed at age 28 in April 2013. She did not have any mutations or a family history. She calls her case a “fluke” — but she’s actually a fluke among many.
“The vast majority of breast cancers, even in young people, are sporadic,” and not linked to any known genetic mutations, Krill-Jackson said. Most estimates put genetic breast cancers at around 10 percent of all cases.
Given this, doctors stress self-examination and early detection, whatever your family history. The main issue with younger patients is that because they aren’t yet getting regular mammograms, their cancers are typically caught at more advanced stages, when visible symptoms have developed, said Dr. Aurelio Castrellon, an oncologist at Memorial Regional Hospital.
Then there’s the problem of patients — and even sometimes doctors — dismissing those symptoms because of a patient’s younger age.
“If someone has something that’s palpable, they shouldn’t be reassured that this will go away, or just to watch it because they’re young. They should look for attention,” he said. “And a second opinion. Many times we see a patient, who tells us, ‘Oh I went to see my gynecologist, he told me that everything was fine but I still felt something.’”
A lump, skin dimpling, a change in breast shape and nipple discharge are things women should look out for, he said.
That sentiment was echoed by Dr. Grace Wang, an oncologist at Baptist Health South Florida.
“Women themselves may not think to look for it, to self-exam, and may not know that even if there is a negative work-up, whether it’s a mammogram or an ultrasound, they need to have further diagnostic tests, because not all tumors are picked up by mammogram or ultrasound,” she said.
A week after first feeling a lump, Kieffer, a nurse practitioner, was at her doctor’s office, demanding an ultrasound.
Breast cancers in younger women can also put plans of having children on hold, or derail them completely.
Chemotherapy usually shuts down a woman’s ovarian functions temporarily, and whether a woman regains her fertility after treatment depends on her age, the drug used, the dosage — and luck.
Some women will opt to preserve some of their eggs before treatment, but the costs usually aren’t covered by insurance, and the price tag for the egg retrieval procedure alone — never mind storage fees — is about $10,000.
Recently, Castrellon said, he’s started discussing goserelin with patients, a drug taken during chemotherapy to put the body in a temporary “chemical menopause.” It’s cheaper than egg retrieval and has shown success in helping women regain fertility after chemotherapy. One study released in May found women on the drug to be two to three times more likely to be able to conceive than those who had not taken it.
Still, he said, with either egg retrieval or goserelin “there are no guarantees.”
If a woman has a hormone receptive positive cancer, a cancer whose growth is encouraged by the hormones estrogen or progesterone, she’s typically prescribed hormonal therapy — which lower the levels of those hormones in the body — for five to 10 years after regular treatment. Tamoxifen, the most commonly prescribed therapy for younger women, can cause birth defects if a woman becomes pregnant while or within two months of taking the drug.
“So if somebody’s 35, and having chemotherapy and then taking Tamoxifen for five years, you know all of sudden she’s going to have her first child at age 41 or 42. And she will have fertility issues by that age,” said Castrellon.
Women who already have children may often find that a challenge itself — especially if caring for the child alone while trying to maintain financial stability. Co-pays for cancer treatments can be in the thousands of dollars, and treatment itself often means taking time off work.
“Not every patient is well supported. ... I have a lot of single mothers. A lot of people have financial stress,” said Wang.
And for those lucky enough to have solid support systems — like Santiago, Kieffer and Munoz, who all thanked supportive partners and family — there’s also the simple struggle of finding people with similar experiences.
“I attempted to go to just a support group, but I did not find it helpful because everybody [either] had kids [or] were generally older, anywhere from their 50s, 60s, 70s and 80s, and I couldn’t relate. I got a lot of support through my friends and my family,” said Kieffer.
Kieffer says she’s developed something of an ad-hoc support group with young women she’s discovered “through the grapevine,” and that she’s told her doctors to tell any young woman they diagnose to give her a call if they want to talk.
Munoz had a similar experience, but ended up finding help through the Young Survival Coalition, where she found an online community of people going through her experience.
“I actually found a lot of survivors in my situation from all around the country — we actually have a really nice Facebook group for triple negative breast cancer survivors, most of them are young.”
To find other young people facing breast cancer, visit: http://www.youngsurvival.org/
Breast cancer events
Baptist Health Low Cost Digital Mammograms: Baptist Health South Florida is reducing the cost of digital mammograms for uninsured patients from Oct. 1-31. $50 for screening mammograms; $100 for diagnostic mammograms. A doctor’s prescription and appointment are necessary. To schedule an appointment or find a diagnostic center visit BaptistHealth.net/BreastHealth.
Komen Race for the Cure: The Komen Miami/Fort Lauderdale Race for the Cure promotes awareness, education and early detection of breast cancer; 6 a.m. Saturday ; Bayfront Park, 301 N. Biscayne Blvd., Miami; $10-$35. 305-668-0070, www.komenmiaftl.org/komen-race-for-the-cure/.
Lecture on Breast Cancer: Dr. Hakan Charles-Harris discusses prevention, symptoms and treatment options. Call to reserve; 6 p.m. Oct. 16; North Shore Medical Center, 1100 NW 95th St., Miami Shores. Free. 1-800-984-3434, www.northshoremedical.com.
The Cadillac Las Olas Art Fair: Enjoy live music and register for the free art giveaway. Proceeds from the sale of will be donated to the Moffitt Cancer Center; 10 a.m.-5 p.m. Oct. 18-19; Southeast Sixth Avenue and East Las Olas Boulevard, Fort Lauderdale. 561-746-6615 or www.ArtFestival.com.
The Healing Power of Yoga: Yoga with Natasha offers a free gentle and restorative yoga class designed to restore sleep and calm the nervous system. Cancer survivors and their families are welcome; 9 a.m. Oct. 18; Curtiss Mansion, 500 Deer Run, Miami Springs. Free. 305-807-7878, www.yogawithnatasha.net.