It wasn’t even the breast where they found the cancer. Her left one was bothering her — she didn’t feel a lump, but it felt uncomfortable, sometimes painful. So she went in for a mammogram. Her life began to change.
In 1996, Monica Green, then in her early 20s, had tested positive for what is called a BRCA gene mutation, a genetic condition that some women carry. Women with mutations of either the BRCA1 or BRCA2 genes are at a greater risk for both breast and ovarian cancers. The doctors laid out two choices: She could remove her breasts and ovaries after child-bearing age and take the drug tamoxifen, or she could do nothing but be tested frequently. She chose the latter, and later removed her ovaries. She was OK for most of the next decade.
But after a suspicious mammogram, Green’s biopsy came back positive in December 2008. Now what?
Green lived in Brooklyn her whole life, mostly in East New York, until she moved to West Hempstead, Long Island two years ago. She was one of 1,469 African-American women diagnosed with breast cancer in New York City from 2004 to 2008, according to the New York State Department of Health.
She learned that she had triple negative breast cancer. In her case, removing the ovaries to decrease estrogen, which can help breast cancer grow, and taking the drug tamoxifen would have done nothing to prevent triple negative. Her best bet had been frequent testing. But while frequent testing can provide early warning, it can’t stop the cancer. And as the name suggests, triple negative is bad news.
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From 2004 to 2008, the average annual breast cancer incidence in New York City was 115.6 per 100,000 for white females and 103 per 100,000 for black females. Yet the average annual breast cancer death rate in New York City was 22.8 per 100,000 for white females and 26.4 per 100,000 for black females. These statistics also reflect national trends, showing that white women got breast cancer more frequently, but black women died of it at a higher rate. In Brooklyn, the average annual breast cancer rate for African-American women was 28.5 per 100,000, higher than any other borough.
Studies have found that a likely reason for the higher mortality rates is that triple negative breast cancers are more prevalent in African-American women. Triple negative breast cancers are typically more aggressive, more difficult to treat and more likely to come back.
Breast cancer cells have three different receptors—estrogen, progesterone and HER2/neu, says Doctor Christine Hodyl, director of breast health services at the South Nassau Communities Hospital. Most cancers are estrogen or progesterone positive, she says. When all three receptors are negative, it’s called triple negative. It is the least diagnosed type—about 10 to 20 percent of breast cancer is triple negative, says Hodyl.
Some time around the early 1990s, medical experts started learning about the different receptors and testing for them. Before that, “every patient was treated in the same way, and some patients did well and others didn’t. And now we know why,” says Hodyl.
These days the receptors are always tested for so doctors know the best treatment for the breast cancer. Depending on the receptor, different medicines are used. Estrogen or progesterone positive breast cancers can be treated with hormone therapies, such as tamoxifen. These drugs block estrogen and progesterone, which can make cancer cells grow. In the last 10 years, says Hodyl, a drug, trastuzumab (Herceptin), has shown success in treating HER2/neu positive breast cancer. Sometimes these drugs can be used without having chemotherapy.
But none of those treatments work on triple negative breast cancer. Besides surgical options, only radiation and chemotherapy can treat it. Also, says Hodyl, chemotherapy is not as targeted a treatment as medications used for other breast cancers.
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Except for some lingering side effects of chemo, including some memory lost and pain in her feet, or if she’s wearing her pink clothing and breast cancer ribbon, you wouldn’t know that Green has breast cancer. The 49-year-old, with her smart rimless glasses, manicured nails, well coordinated outfits and upbeat personality, doesn’t appear as if cancer has taken a toll on her mentally or physically. Inside and out she is put together, and likes to follow the mantra that says to feel good, you have to look good.
What keeps her uplifted and busy are her church, cancer supports groups and a close-knit family, which includes her daughter, 24, and her niece and younger and only sister, who both live in the same house as her in Long Island.
Though Green kept a positive attitude throughout her treatment, she admits there were difficult periods, especially when going through chemotherapy.
The effects of the treatments made her unable to continue with her job as a private duty nurse, and today she is still unemployed. She says she felt so tired some days that it was exhausting just to take a shower and get dressed. She experienced joint pain and nausea, and food didn’t have much of a flavor. “I liked to have spicy food because at least you would have a taste,” she says.
Green was most frustrated with the memory loss that came with the chemo. At times it made her depressed. Even today, it takes her several minutes to recall things, such as where her daughter went to college. “Things like that used to really irritate me because that’s not a part of who I am,” she says. “But you have to realize you have to adjust to the new person that you become.”
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Triple negative breast cancer seems to affect two groups more so than others—younger women and African-American women. Research shows that something genetically may make African-American women more prone to that type of cancer.
Results released in March 2009 from a Boston University Medical Center study showed that triple negative breast cancer is three times more common among black women than among white women, even when age and weight are considered. It also found that the average age of those diagnosed with this type of breast cancer was younger than other types.
A study published in July 2010 showed similar results. Researchers from the University of Michigan Comprehensive Cancer Center found that 26 percent of American women of African ancestry were triple negative, while only 16 percent of white American women with breast cancer had that type. Though the researchers acknowledged that multiple factors might play a part in the higher mortality rate, biologic factors seem to come into play.
Green’s aunt also had breast cancer, but caught it in a late stage and died in her mid-40s. She doesn’t remember if her aunt was tested for triple negative breast cancer, it was 27 years ago, so likely she wasn’t. Because of her aunt’s diagnosis, and a benign lump on her breast, her sister took part in a study at the Memorial Sloan-Kettering Cancer Center in New York City that tested for the BRCA gene mutation. Her sister tested positive, and, afterwards urged Green to also take the test, so she did.
Because of her BRCA1 mutation and a non-cancerous growth, known as a fibroma, that she had in her left breast in her early 20s, Green went for breast cancer screenings at least twice a year for about 20 years, up until her diagnosis.
“Statistically, a patient with no history and no problems, no biopsies that were abnormal, has about a 12 percent risk for developing breast cancer,” says Hodyl. But “with the BRCA gene, it’s anywhere from a 50 to 85 percent chance.”
Women with the mutation are also more likely than those without it to have triple negative breast cancer, she says. A 2008 study published in the American Society of Clinical Oncology found that 57.1 percent of the BRCA1 positive patients and 23.3 percent of the BRCA2 positive patients had it, while only 13.8 percent of BRCA-negative did.
Green eventually had a double mastectomy—both breasts removed. At the same time, she chose to also have reconstructive breast surgery. After that surgery, Green was diagnosed as cancer free in September 2009.
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Her mother, who was going through her own cancer battle at the same time as Green, was not so lucky. Only about a year and half before Green found out she had breast cancer, her mother was diagnosed with lung cancer. Green knew she had to hide her breast cancer diagnosis from her mother so she wouldn’t upset her when she was sick.
She was able to conceal it from her for about five months. But her mother knew something wasn’t right. One day, when Green was visiting her at the hospital, her mother told Green that she needed to talk to her. Green knew that her mother was suspicious about her change in schedule and health, and may need to finally tell her mother the truth. But Green still didn’t feel ready. She thought, “What am I am going to do?” So she called her sister, one of the few people who knew along with Green’s daughter and some friends, and said, “Mommy’s after me, I think.”
After Green hung up with her sister, her mother told her to sit down next to her hospital bed. She said to Green, “I need for you to tell me what’s going on with your health. I don’t want you to lie. I don’t want you to beat around the bush. I just want you to come straight out and tell me what’s going on.” So Green told her. She handled it very well, Green says. “A mother is always concerned. But I was more concerned for her than I was myself.” Her mother died in November 2009.
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Green’s experiences with cancer, both as a patient and caregiver, drive her to get the word out about breast cancer, especially in the African-American community. One way she is doing so is through Sisters Network, a national breast cancer survivor support group for African-American women founded in 1994 with 40 affiliate chapters around the country. Green, together with Suzette Sheppard, the chapter’s president, whom she met at another support group, decided to start a Brooklyn chapter in March 2011. It is the only one in New York state.
They meet once a month at the Bedford-Stuyvesant YMCA, but they also go around to other places around the New York City area to speak. “We’ll speak to anybody who will allow us, so that we can get information out into the community, so that we can hopefully decrease the incidence of African-American women and breast cancer,” says Green, who’s the chapter’s membership coordinator. For example, she adds, members can show women how to do breast self-examinations and where they can get free mammograms.
In addition to the Sisters Network, Green regularly attends meetings for two other support groups. She says the groups help those with cancer talk about things family members might not understand, like side effects of treatment, and enables cancer victims to share resources and tips. “Anybody, no matter what type of cancer, I think they should join a support group,” says Green.
In January, she started a support group at her church, St. Paul Community Baptist Church in East New York, for men and women with any type of cancer.
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She remembers going to church even though she was tired from the chemotherapy. She would lean her head against a pole next to the pew where she would sit. Often she wouldn’t even remember what her pastor was preaching about, but she always came to church. Her faith is a big part of her life, and has helped her stay positive since her breast cancer diagnosis.
Green says with any sickness, you have to feel good inside because that helps you fight whatever you are up against. “For me personally, if it wasn’t for God, and my faith, and my belief with him, I know that I wouldn’t be sitting here.”
This story is part of a series of stories that focuses on the less economically vibrant parts of Brooklyn. For more, check out the rest of our Under the Radar series.
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