René Syler’s morning was thrown off balance the day ABC’s Good Morning America co-anchor Robin Roberts announced on air that she had breast cancer. The two are friends, and the news reminded Syler, formerly of CBS’ The Early Show, of the emotional rollercoaster she recently faced as she battled the threat of breast cancer.
Roberts, 46, is among an estimated 19,010 African American women who will be diagnosed with breast cancer this year, according to the American Cancer Society. The National Cancer Institute predicts that one in eight women born in the United States will develop the disease in their lifetime, and that the probability of a diagnosis increases once a woman turns 40. Syler, who is 44, faced those odds. She had a family history of breast cancer, and for years her own mammograms indicated microcalcifications associated with early stages of the disease. So in January she underwent a five-hour prophylactic mastectomy to remove both her breasts.
Syler’s mother and father both had breast cancer. The microcalcifications, or little white flecks, that showed up on her annual mammograms required multiple biopsies — four on the left breast, one on the right. Four years ago she was diagnosed with atypical ductal hyperplasia, an abnormal growth of cells lining the milk ducts that can be harmless but in some cases may indicate a higher-than-average risk of developing breast cancer in the same breast in the future. Based on these factors, her doctor estimated Syler’s risk of developing breast cancer was 40% higher than the average.
“That was a sobering number,” says Syler, a wife and _mother of two who says that with the surgery she has cut her risk down to almost zero. It was after the fourth biopsy in as many years, and all in the exact same spot on the breast, that she knew she had had enough.
“When the swelling went down I looked at what was left of my breast and I was stunned,” she says. “It had collapsed. As I was standing there in the mirror looking at myself, I said, ‘How much more of this can I take?’ It was so unfair. I was working so hard to stay healthy. That was sort of the epiphany. I was standing there crying and I said, ‘I’m not going to live my life that way. I’m going to be proactive.'”
Syler, who has since become an ambassador for Susan G. Komen for the Cure, an international network of breast cancer survivors and activists, admits that her choice isn’t for everyone. “It was the decision for me. It is a very drastic surgery and a very last-resort thing.”
The proactive approach to breast cancer is atypical for African American women, who have higher death rates due to lack of medical access and utilization
of early detection and treatment options. No national numbers are available for the number of prophylactic mastectomies, but they have become more common in recent years. Dr. Kathie-Ann Joseph, an African American breast surgeon and assistant professor of surgery at New York-Presbyterian Hospital/Columbia University Medical Center in New York City, says she performs more radical surgeries on younger patients these days. A 28-year-old patient of hers, who has a very strong family history of cancer and a genetic predisposition, had both breasts removed after being diagnosed with cancer in her left breast for the second time, although no cancer was found in the right.“Many women are saying, ‘Hey, I’ve had enough and can’t live like this; I feel like a ticking time bomb,'” Joseph says. “Younger patients want the best odds at survival, and many younger women don’t want to have to do this again.”
HIGHER RISK
The American Cancer Society reports that 178,480 new cases of invasive breast cancer are expected this year. Excluding cancers of the skin, breast cancer is the most common cancer among all women, accounting for nearly one in three cancers diagnosed in U.S. women. The incidence rate of breast cancer is about 12% lower in African American women than in white women; however, among women under 40, the incidence is higher. The disease is the most common cancer for African American women, affecting 27%, followed by lung cancer at 13%.
Regardless of age, the death rate for breast cancer among African American women was 36% higher in 2004 than for white women, according to the American Cancer Society. The organization estimates that more than 40,000 women will succumb to breast cancer this year, and of those, almost 6,000 will be African American. The five-year survival rate among African American women with breast cancer diagnosed between 1996 and 2002 was 77%, compared to 90% among whites — numbers the American Cancer Society attributes to the disparity in detection and poorer stage-specific survival.
Of all breast cancers diagnosed among African American women, 52% of cases are diagnosed at a localized stage, meaning they are confined to the breast, compared to 62% among white women. The stage of detection among all women is critical because survival rates increase drastically the earlier the cancer is _discovered. In African American women diagnosed when the disease was at its localized stage, the five-year survival rate from 1996 to 2002 was 94%; at the regional stage (spread to surrounding tissue) it was 77%; 16% at the distant stage (after it has metastasized); and 45% at unstaged. Some evidence suggests that African _Americans have more aggressive and larger tumors than white women, according to the American Cancer Society.
Although Joseph says she sees more African American women being diagnosed at earlier stages, it’s not at the
level she would like and definitely not at the level she sees with her white patients. In August she said she saw a 62-year-old woman who had just had her first mammogram and was diagnosed with an advanced stage of breast cancer. She _attributes the recurring late diagnosis to a combination of factors. “I think it’s fear of the doctors,” Joseph says. “It’s almost like a fatalistic thing, like if it’s meant to be it’s meant to be and there’s nothing that can be done.”Younger generations, she says, are more educated and understand that with treatment some breast cancers are curable, while older generations still think that “once you get ‘the big C’ it might as well be a death sentence. And the sad part is breast cancer is one of the most curable cancers that you can get if it’s caught early. You want to catch it while it’s only on the mammogram and you don’t feel it.”
EARLY DETECTION
Not that mammograms, or any test, are perfect. Roberts discovered her lump during a self-exam, prompted in part by the death of her colleague, ABC’s movie critic Joel Siegel, who lost his long battle with colon cancer in June. Roberts said an ensuing mammogram failed to show her lump but an ultrasound verified its existence.
Joseph recommends that women who have dense breasts _discuss with their doctors having an ultrasound in addition to a mammogram, and that if a woman has a new lump and a _negative mammogram, she should see a surgeon and have a biopsy. “The lump should be evaluated until there is diagnosis,” Joseph says. “Some lumps that women feel are simply normal breast tissue and may be more prominent with hormonal changes. A woman has to be her own advocate and go to a breast specialist, in particular African American women, who are prone to develop breast _cancer at younger ages as well as die from breast cancer.”
There are also different types of breast cancer. One, inflammatory breast cancer (IBC), targets younger African American women, including teenagers, more often than white women and is one of the most aggressive forms of the _disease, with a five-year survival rate of 25% to 50%. It is indeed rare, accounting for only 1% to 5% of all breast cancer cases in the United States.
In March 2004, Jamillah Abdul-Baaqiy, 43, of Springdale, Maryland, a
woke one morning and discovered that her right breast was significantly larger, warm, red, and had an inverted nipple. She went to various doctors, all of whom told her she had a breast infection and prescribed antibiotics. Mammograms and other tests revealed no problems, and doctors insisted that she did not have breast cancer. But feeling in her heart that something was wrong, she kept searching for answers and eventually was diagnosed with IBC. It was so uncommon that when the time came for her biopsy, the hospital’s nursing staff was brought in so they could see what it looked like.
TREATMENT OPTIONS
Abdul-Baaqiy was put on chemotherapy prior to the removal of her right breast and at least seven lymph nodes. More chemotherapy, then radiation, followed surgery. She had practiced a holistic lifestyle and through her treatments continued seeing an acupuncturist, which she believes kept her white blood cell count elevated. The count usually drops as a result of chemotherapy. “My _oncologist couldn’t understand how my blood cells didn’t drop,” Abdul-Baaqiy says. “My _numbers were amazing.”
She rebuffed taking anti-cancer drugs, including _Herceptin, a drug approved by the Food and Drug Administration that is part of a group of breast cancer treatments called monoclonal antibodies. Unlike chemo and radiation, reported side effects are less severe on the body — although this drug can affect the heart. In 2005, after beginning a fitness routine where she walked three and a half miles a day and overhauled her all-organic diet to eliminate sugar, wheat, gluten, and nearly all dairy products, a tumor was discovered in Abdul-Baaqiy’s brain. She has since had three brain surgeries, each tumor removed larger than the last, the most recent one in July.
But Abdul-Baaqiy isn’t alone in turning down medication. Syler could have taken tamoxifen, a pill to treat the disease that is also used in breast cancer prevention for women at high risk, but it affects the activity of estrogen and also increases the risk of uterine cancer.
An FDA advisory committee in July recommended approval of raloxifene, a drug currently approved to prevent and treat osteoporosis, to reduce invasive breast cancer risk in postmenopausal women with osteoporosis or with a heightened risk for breast cancer.
COMING TO TERMS
Men can be at risk for breast cancer, too. Syler’s father was _diagnosed when he was in his 40s, and actor Richard Roundtree was diagnosed in 1993. Allen Herbert, a small-business owner who lives in Sterling, Virginia, is among the estimated 2,030 men who will be diagnosed with breast cancer this year. He had a mastectomy in June and is undergoing chemotherapy.
Herbert’s diagnosis came as a shock, and not just because he’s a man. “I don’t drink,” says Herbert, who turns 46 this month. “I eat right. I exercise all of the time. I don’t eat any meat. I’m in great shape for my age. No one in my family has cancer.”
Breast cancer can be emotionally devastating, regardless of the victim’s gender. But the removal of a breast is particularly _distressing to many women. “I loved my breasts and so did my _husband,” says Abdul-Baaqiy, who now wears a prosthesis. “When I took my first bath [after the mastectomy] I sat there. Your breasts float in the water and I only had one. I just bawled. I mourned the loss of that breast. I did not expect that.”
But there are procedures, including breast reconstruction, that help women better adjust. Syler had a nipple-sparing mastectomy, which saves a woman’s nipple and areola for reconstructive surgery and is gaining in popularity.
“I nursed two babies,” Syler explains. “They did what their purpose was and they were becoming a lot more trouble than they were worth.”
SCREENING GUIDELINES
Because early-stage breast cancer typically produces no symptoms when the tumor is small and most treatable, it’s very important for women to follow the American Cancer Society’s recommended guidelines for detection — before symptoms develop. Note that women at increased risk (e.g., family history, genetic tendency, past breast cancer) should talk with their doctors about the benefits and limitations of starting mammography screening earlier, having additional tests (i.e. breast ultrasound and MRI), or having more frequent exams.
Age 20-39:
- Clinical breast examination every three years
- Monthly breast self-examination (optional)
Age 40 and older:
- Annual mammogram
- Annual clinical breast examination
- Monthly breast self-examination (optional)
Resources
- American Cancer Society: A nationwide community-based voluntary health organization dedicated to eliminating cancer as a major health problem through research, education, advocacy, and service. www.cancer.org; 800-ACS-2345
- Susan G. Komen for the Cure: The world’s largest international grassroots network of breast cancer survivors and activists fighting to save lives, empower people, ensure quality care for all, and encourage the scientific community to work toward the cures. www.komen.org; 800-I’M-AWARE
- Body & Soul – A Celebration of Healthy Eating and Living: A wellness program developed for African Americans through collaboration between the National Cancer Institute and churches. www.bodyandsoul.nih.gov
- Look Good…Feel Better: A program designed to provide cosmetic offerings to women to help restore their appearance and self-image during chemotherapy and radiation treatment. www.lookgoodfeelbetter.org
- National Breast and Cervical Cancer Early Detection Program: Helps low-income, uninsured, and underinsured women gain access to breast and cervical cancer screening and diagnostic services. Each state Department of Health office will have information on how to contact the nearest program participant. www.cdc.gov/cancer/nbccedp
- University of Texas, MD Anderson Cancer Center: The Center for Research on Minority Health is a comprehensive investigative, educational, and outreach unit that focuses on decreasing the incidence and prevalence of morbidity and mortality in ethnic minorities and medically underserved populations. www.mdanderson.org/departments/CRMH
- National Medical Association: The largest and oldest national organization representing African American physicians and their patients in the United States is committed to the elimination of health disparities and the promotion of healthy lifestyles among African Americans and other underserved populations. www.nmanet.org
- American Holistic Health Association: A free and impartial nonprofit clearinghouse for wellness resources across the nation. www.ahha.org