Delaware is No. 1 in aggressive form of breast cancer

An aggressive form of breast cancer is hitting Delaware women particularly hard, and community leaders, researchers and clinicians have no clear idea why.

The state ranked first for cases of triple negative breast cancer, according to a March report from the North American Association of Central Cancer Registries and the National Cancer Institute. State and national cancer experts say that study only used one year’s information and may not reflect the full picture, but Delaware would still rank in the top five even with more data, they believe.

“Definitely we have a problem in Delaware,” said Dr. Jennifer Sims-Mourtada, senior clinical scientist with Christiana Care Health System’s Center for Translational Cancer Research.

Triple negative patients lack the hormone cell receptors for progesterone, estrogen or HER2/neu growth proteins that other breast cancer patients have, making it impossible to kill the cancer cells with hormone-specific drugs.

This diagnosis disproportionately affects women under 50, and African-American women are twice as likely to be diagnosed, according to the study. Women who have it are more likely to have a recurrence in the first three years after diagnosis, and the five-year survival rate is about 75 percent, compared to 93 percent for other breast cancers.

Love Congo, 45, of Wilmington, was blindsided by her diagnosis. She was diagnosed in April, when she and her 12-year-old daughter, Nyiah, had returned from a trip to the Mall of America in Minnesota. Love felt some discomfort under her right arm, which she wrote off as muscle strain. But her doctor suggested an X-ray, ultrasound and mammogram because the pain was near her breast.

Eight biopsies later, doctors found stage three triple negative breast cancer tumors had spread from her breast to her lymph nodes. Surgery was not an option. Intense chemotherapy was her only choice.

“The first thing that I said is ‘I have a 12-year-old daughter to raise,’ ” Congo recalled.

This October, as the state and nation turn pink for breast cancer awareness, researchers are committed to finding out why triple negative breast cancer seems to be disproportionately affecting Delaware women.

Of the nearly 600 invasive breast cancers diagnosed each year at the Helen F. Graham Cancer Center and Research Institute, about 90 are triple negative, and one-third were in black women.

Of the 250 breast cancer cases that Bayhealth Medical Center sees, about 40 percent are triple negative, said Dr. Rishi Sawhney, medical director of Bayhealth Cancer Institute. He says that between one- to two-thirds are in black women.

Sims-Mourtada said the study proves that triple negative breast cancer needs to be a research priority. Her statewide research team is looking at risk factors such as obesity, genetic mutations and the number of children women have.

“These have been shown in other studies to be related to development of triple negative breast cancer,” Sims-Mourtada said.

“There are many prongs to this,” said Sawhney, adding that Bayhealth is looking into possible genetic links. “I think honestly the best statewide focus we can really look toward is really based on getting women out for their mammograms and screenings.”

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Overall, incidence rates for breast cancer in Delaware have remained stable, said Lisa Henry, chronic disease bureau chief for the Delaware Division of Public Health, and mortality rates have decreased substantially.

The latest state report, released in July, showed fewer women are dying from breast cancer; African-American women in particular had reduced mortality rates of 33 percent.

Harsh treatments

Most breast cancer cells contain the hormone receptors estrogen and progesterone and the protein receptor HER2/neu, which help those cells grow.

Hormonal therapies and HER2-targeted therapies can stop those cells from growing. A study in the medical journal The Lancet found that patients with estrogen-receptor positive cancers who took the hormonal drug tamoxifen saw mortality reduced by one-third in the 15 years after diagnosis.

Triple negative breast cancer cannot be treated that way. There are experimental treatments, but the standard protocol now is intense chemotherapy, radiation and surgery.

Diann Jones, 47, of Middletown, receives chemotherapy four to five hours a day every other week for triple negative breast cancer. It began 10 days after a lumpectomy to remove a stage 1 cancerous lump.

“It’s kind of like a blast of everything,” Jones said. “It’s like morning sickness times 100.”

After chemo, patients receive a shot of Neulasta, which restores white blood cells and platelets killed by the chemo.

“It causes a lot of body aches and pains and your bone marrow is expanding to keep your blood going,” Jones said.

Her last round of chemotherapy is Oct. 26. Then, after a two-week break, she will begin radiation therapy five days a week for seven weeks.

“My last treatment should be radiation the week between Christmas and New Year,” she said.

The treatments make driving and sometimes getting out of bed in the morning impossible.

“Sometimes it’s all I can do to have my 7-year-old hold my hand and walk around the perimeter of my yard,” she said.

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Sims-Mourtada and her research team are looking into what drives the growth of triple negative breast cancer cells, information that could help create better treatments and possibly predict who could be at risk for relapse.

Research suggests triple negative cancer has higher levels of inflammatory cells in and around the tumor, but these inflammatory cells act opposite of how they should.

“Instead of healing a wound,” said Sims-Mourtada, “it’s pushing a tumor to grow.”

The Baltimore Sun recently reported on an experimental therapy with a drug called Atezolizumab at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins.

The drug is used to treat patients with lung and bladder cancers as well as melanoma, and has been promising in triple negative patients. The drug targets a protein prevalent in triple negative breast cancers and stops it from growing.

Luckily, Jones’ cancer hasn’t spread to her lymph nodes, but the lump in her breast had grown about a third in size in just three weeks.

“I am so thankful it was caught at stage one and early,” she said.

She and her daughters, Brianne, 7, and Alexandra, 5, read “Mommy Has a Boo Boo in Her Boob” religiously following her diagnosis.

She wanted to be honest with her girls since they were so young. She has an older daughter as well.

Jones just applied to be a part of a clinical trial through the Mayo Clinic, which is trying to create a vaccine that would lower a woman’s recurrence rate. It’s her way of giving back to other women, she said.

Coping with a tough diagnosis

Pauline Powell is convinced that the reason she is here today is because she was diagnosed with triple negative cancer early.

“It doesn’t wait to spread,” said Powell, now 67.

Powell, originally from Jamaica, moved to Smyrna from New Jersey after retiring as an intensive care and cardiac rehabilitation nurse. She was diagnosed with stage one triple negative breast cancer in November 2013. She had surgery in January 2014.

“I got a lot of support from family and friends,” Powell said.

Her faith got her through the tough days, she said, but the reality of the disease would still set in. A friend was diagnosed with triple negative last August, just as Powell had wrapped up with treatment. She died three weeks ago.

Laura Simonelli, a psychologist who helps run a triple negative breast cancer support group, at Christiana Care’s Helen F. Graham Cancer Center and Research Institute, said fear of recurrence is one of the biggest problems faced by triple negative breast cancer patients.

“There’s the sense that there is not that much out there for them,” she said.

Genetic risks

A stage two triple negative breast cancer diagnosis was already a shock to Lora White-Green.

Then she was told a genetic test revealed she tested positive for BRCA 1 gene, which when mutated increases a woman’s risk of breast cancer. The American Cancer Society estimates that 55 to 65 percent of women who inherit the mutation will develop breast cancer and 39 percent will develop ovarian cancer by age 70.

“I’m stunned all over again,” recalled White-Green at her home in Bear nearly four years later. She immediately thought of Angelina Jolie and the actress’s decision to have a double mastectomy after her tests results.

“I guess the girls have to go because I’m all about living,” White-Green remembers thinking.

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About 20 percent of the women diagnosed with triple negative breast cancer carry the BRCA 1 and 2 genes, said Bayhealth’s Sawhney. Those genes might help scientists create new treatments, she said.

When White-Green was first diagnosed with triple negative breast cancer her husband was in denial, telling the doctor, “She’s healthy. She just eats vegetables.”

Now, at 58, she’s trying eat those vegetables even more and go for daily walks with her friends. Her daughter, who is 25, plans on taking the genetic test soon.

White-Green eventually learned to “rock the bald” after chemotherapy and recover after her breast reconstruction surgery. To cope, she started to crochet and found she has a gift. She and other women from her church donate blankets and hats to local organizations and chemo units at hospitals.

She is anxiously awaiting the day she is five years cancer-free, but considers herself lucky to have made it this far.

“Hindsight being what it is, it’s made me so much stronger,” she said. “To live life. To enjoy. To set limits. To say no.”

Increasing outreach

After weeks of chemo Congo said that doctors have seen the spots shrink considerably. Though she still needs surgery, she’s staying positive.

She would like to see more awareness of triple negative breast cancer.

“There’s not just one type of breast cancer,” Congo said. “You don’t really become aware unless you are directly affected.”

Triple negative breast cancer outreach and awareness has been a new focus for Nora Katurakes, Christiana Care’s manager of Community Health Outreach and Education and her team.

“We are attempting to reach out to women who are not in such a crisis situation,” Katirakes said.

It’s important for women to be aware of their body, know when screenings should take place, look for family risk and bring up health histories in conversations with family members.

With breast cancer outreach it’s important not to focus on survival rates, she said. She prefers to focus on screening rates. Recent state data shows that 80 percent of Delaware women were getting mammograms. That alone may account for a higher rate of triple negative cancers because with higher rates of screening, more cancers are caught, some health experts theorized.

Institutions are just scratching the surface of breast cancer education, says Joyce Rickards, a patient advocate with Beebe Healthcare’s Sisters on a Mission.

Rickards’ mom was a 25-year breast cancer survivor when she was diagnosed with triple negative in 2006.

“I know with my mom it metastasized so fast that the chemo treatment she was taking just couldn’t kill it,” she said.

Her mom died in 2009.

She said the community needs to hear more from women who are fighting it, but most, women need to know “how do we go about trying to battle this so it doesn’t happen to the next generation.”

Jen Rini can be reached at (302) 324-2386 or jrini@delawareonline.com. Follow @JenRini on Twitter.