When Tonya Trotter first felt a quarter-size knot in her breast, she didn't rush to get a mammogram. Over the next few months, the lump grew to the size of a tennis ball.
But it was the sharp pain in her breast that finally persuaded her to go to the emergency room in August 2012.
Two days later she learned she had a type of breast cancer called "triple negative."
"My first question was, what is triple negative?" said Trotter, now 35, who along with her two children has moved to Indianapolis to live with her parents. Trotter will be among an estimated 20,000 people participating in the Susan G. Komen Race for the Cure on Saturday.
Doctors also would like to be able to answer that and to render triple negative breast cancer — which often has a worse prognosis than other breast cancers — an obsolete term.
Mostly, doctors say, they know what this disease is not — one of three types of cancers that respond to hormonal therapy or other drugs that target cancer growth.
"In some ways, triple negative is a horrible term," said Dr. Kathy Miller, Ballve Lantero Scholar in Oncology and an associate professor at the Indiana University School of Medicine. "It doesn't tell you anything about what it is. ... Triple negative is not one thing. It's really a garbage term."
Quick strike
It tends to strike younger, premenopausal women as well as African-American women and those who carry the BRCA1 gene, a mutation linked to breast, prostate, ovarian and other cancers.
Triple negative breast cancer, which comprises from 10 percent to 20 percent of all breast cancers, can be aggressive and crop up quickly. Often it isn't found on a mammogram but declares its presence as a detectable lump.
Since it is aggressive and there are few other options for treatment, almost all women diagnosed with triple negative breast cancer undergo chemotherapy, no matter how small the cancer.
"That's our only medical option for their treatment," said Dr. Erika Rager, a breast cancer surgeon with the Franciscan Physician Network.
Then there's the name with all the dire connotations. Triple negative breast cancer tends to have a poorer outcome in the first five years after treatment than other types of breast cancers.
"When you ask people what kind of breast cancer they have, a lot of women don't know or don't remember. But when you're triple negative, you know because it's scary," said Michele Cohen, who was diagnosed with the disease in January 2013.
In late 2012, a friend visited to show off the results of her cosmetic breast surgery. Fresh from the operating table, she worried that her breast was swollen and in the interest of comparing a normal to a swollen breast, Cohen felt her own. There was a lump.
At first, Cohen, 42, thought little of it. Her family was headed on vacation and as a fitness and yoga instructor she lived a healthy life. Still, in early January she saw her doctor, who thought it was a cyst but sent her to mammography to be sure.
Two weeks later, she started chemotherapy.
"When I heard the word 'aggressive,' I knew I needed to jump on my treatment," she said.
The BRCA1 mutation link
The next year was a whirlwind of hospital visits for the Carmel mother of two. Genetic testing revealed that she carried the BRCA1 mutation, although she knew of no one in her family who had had breast or any of the other cancers associated with the gene.
Over the next six months, Cohen went through chemotherapy and prophylactic hysterectomy. In July, she had a bilateral mastectomy and then radiation.
Now, Cohen is trying to get back to her pre-diagnosis health. Her parents are mulling whether to pay the $7,000 it would cost to undergo testing for the mutation. When her children turn 18, they, too, will have the test.
Because of the link to BRCA1, testing is now standard for women who develop triple negative breast cancer, even in the absence of a family history of cancer, Rager said. While it's much more common to have a family history, these mutations can arise.
Doctors are used to not having clear answers, however, when it comes to triple negative breast cancer. For instance, why does treatment eradicate the disease forever in some people but in others it recurs quickly, often in deadly form?
"That's the million-dollar question," said Dr. Dorinda Rouch, a medical oncologist with Hematology Oncology of Indiana.
IU leading trial
Researchers are conducting a host of trials centering on triple negative breast cancer.
One Indiana University School of Medicine researcher, Dr. Bryan Schneider, is embracing the notion that triple negative breast cancer could be many diseases. He has started enrolling patients in a trial that begins with conducting a genetic analysis on each woman's tumor to see whether it's vulnerable to a drug on the market, whether for cancer or another malady.
"We are using cutting-edge genomics to help us identify the gas pedal that drives the tumor and to find the drug that will take out that gas pedal," said Schneider, an associate professor of medicine and medical molecular genetics.
Standard treatment for triple negative calls for a woman to undergo chemotherapy followed by surgery. Not all triple negative breast cancers respond the same to this regimen. For about one in three women, the tumor shrinks — and can even disappear — by the time of surgery; others do not show this response.
The IU-led trial, which will enroll about 130 women at 40 sites, will target women in the latter group, women who tend to have a worse prognosis. Half the patients will have their tumors sequenced. If a particular gene or protein appears to be involved, the researchers will try to find a drug that stops that gene in an attempt to derail the cancer.
Any FDA drug could be fair game, Schneider said, though he expects about 12 to 15 will be used most often.
"We're not testing a specific drug; we're testing a concept," he said.
So, the more that doctors learn about triple negative breast cancer, the more they realize it may require different approaches.
Self exams are key
Given that triple negative cancers is more common in young women, self and clinical breast exams are critically important, said Dr. Nate Thepjatri, a breast surgical oncologist with the Community Health Network.
"Any woman who notices any change in any lump needs to get it checked out," he said. "A young age in itself is not a reason not to figure out what's going on."
In retrospect, Trotter said, she wishes she had known that two years ago when she first felt a knot the size of a quarter. Maybe then, she would not have lost her right breast.
Cancer-free since July, Trotter is focusing on the future. This weekend, she plans to walk with her daughter and son, her parents, other family and friends, including a cousin who's also a breast cancer survivor. She also tries to keep up on new research into triple negative breast cancer.
"It makes you ask that question, 'Why, why did I get triple negative and the next person didn't?' " she said. "I'm hoping that one day we won't need to do any research because there will be a cure for all breast cancers."
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