Survival Tactics African-American women support one another in battle against breast cancer

THE BALTIMORE SUN

As thousands of breast cancer survivors and women's health-care advocates plan their march on Washington later this month, many African-American women are stepping forward in their own communities to tell of their physical and psychological recoveries from breast cancer.

Their stories of hope help brighten a landscape of frightening statistics: Although the incidence of breast cancer is higher in white women, the mortality rate is higher among black women. Following discovery of breast cancer, the five-year survival rate is about 79 percent for white women and 62 percent for blacks, says Brenda Edwards, associate director of the Surveillance Program of the National Cancer Institute.

Studies have also shown that many breast cancers in white women are detected at earlier -- usually more curable -- stages than they are in African Americans. Many attribute this difference to the use of mammograms, breast X-rays which can detect tiny cancers before they can be felt.

Activists say lack of accessibility to cancer-prevention programs and misconceptions about the disease and its survivability have kept many low-income women from seeking early cancer detection and treatment for breast problems. Breast cancer survivors hope their knowledge can help to reverse that trend.

Seven years after her mastectomy, Patricia Lawson, a receptionist for T. Rowe Price Associates, recalls the situation of her fateful diagnosis. After noticing her breast had remained sore longer than usual during her hormonal fluctuations, she went to her physician for further testing.

At the time, she wasn't worried, she says. She was 42.

As she awaited her biopsy results, however, it suddenly seemed that the analysis was taking too long.

"When Dr. Harrison came back, he said, 'I've been trying to get hold of your brother,' " Mrs. Lawson recalls. "And then he said, 'The tests were positive.' And I wilted right there."

Caught early enough, her cancer did not need medical treatment beyond surgery. But Mrs. Lawson continues to value the healing powers of Sisters Surviving, a support group founded by her surgeon, Dr. Miles G. Harrison Jr. Sisters Surviving is one of the nation's first breast cancer survivor self-help groups for African-American women.

"You are with others who know how you feel," Mrs. Lawson says. "Others who support you regardless of how down you feel."

During the past few years, such breast cancer support groups as Women of Color in Los Angeles and Save Our Sisters in Wilmington, N.C., have joined other cancer-awareness activists in teaching women in low-income communities that breast cancer is a survivable disease.

And, increasingly, such prominent African-American women as singer Patti LaBelle and ophthalmologist Patricia Schmoke, wife of Baltimore Mayor Kurt Schmoke, are sharing their personal knowledge of the disease. (Breast cancer runs in Ms. LaBelle's family; Ms. Schmoke is a breast cancer survivor.)

"There used to be a time when no African American would talk about breast cancer, so we assumed that no one got it," says Robin Hurdle, director of the African-American outreach program Cancer Care, a nonprofit social services organization in New York. "People are beginning to realize that African Americans do get breast cancer: The neighbor next door, or her mother, or her aunt."

She encourages women to sign up for screening mammograms, tests given when there are no symptoms of breast trouble. Because more African-American women are younger than white women when they develop breast cancer, they should receive baseline screening mammograms at the age of 35, according to the National Medical Association, an organization representing about 20,000 black physicians and health professionals. (The American Cancer Society recommends a baseline mammogram at the age of 40.)

In her community work, Ms. Hurdle has found that many women disregard evidence of breast problems.

"Many women of color aren't just dealing with the idea of breast cancer, but with the potential financial issues which surround it. It's 'If I ignore it, I don't have to deal with the treatments, with the doctors, with the insurance, with the family I'm responsible for.' "

Many women mistakenly believe the diagnosis of a breast problem will seal their fate, she says. Stories spill out about friends and family members who sought advice on breast lumps, were operated on and died shortly thereafter.

"I always say to them, 'How long did the person suffer with the symptomology? Tell me how long they ignored the discharge, or the lump, or the pain, or the change in the breast before they got treated, and then we'll talk about what happened after that,' " Ms. Hurdle says.

She must often struggle against prejudice toward the medical establishment; distrust can run high in low-income communities.

"You have to correct the misconception that the surgeons cut you open and somehow cause the cancer to spread," she says.

Survivors's testimony

In such a climate, the testimony of breast cancer survivors becomes particularly potent.

"It's very important that we hear from a sister that this thing can be survived," says Peggy Toy, director of the Western Region of the National Black Leadership Initiative on Cancer, an arm of the American Cancer Society.

Breast cancer survivor Lula Roy has made it her mission to tell other women about the necessity of mammograms and breast self-examinations. A management analyst for the office of public and employee services at the Social Security Administration, she had a mastectomy in February after a routine screening mammogram revealed a lump. Since then, she has joined a breast cancer support group at Social Security and has helped recruit volunteers for breast cancer fund raising.

"I'm doing fine," she says. "And I want to make sure that I get the word out."

In 1988, Dr. Harrison began the "buddy-system" program which became Sisters Surviving in order to ensure that his post-surgical patients could continue their emotional and psychological recovery. (The group now includes other breast cancer survivors as well and is not limited only to African-American women.) His inspiration was a mastectomy patient who felt uncomfortable attending a hospital-based breast cancer support group.

"She did not share the experience of the other women there," Dr. Harrison says. "The other women wanted to know when they would be able to play tennis again. She wanted to know when she would be able to carry a shopping bag."

Cultural and socio-economic differences can thread their way through the entire subject of breast cancer, Ms. Hurdle notes. Although public education campaigns on breast cancer proclaim that women "owe it to themselves" to spend the money and time necessary for breast care, that message must be underlined for African Americans, she says.

"It's not that we're apathetic [about screening and treatment], or that we don't care, or that we're fatalistic; it's that we really haven't begun to educate ourselves emotionally that it's OK to be first. This is not only a gender thing, but a racial thing as well: In many cases, our history as African-American women is that we've been indoctrinated to feel that we are the caretakers. The master and mistress got taken care of first, then the animals, and the last level was taking care of yourself. Part of that is still very pervasive."

Finding treatment

She says many African Americans also take longer to find treatment after their diagnosis.

"For a white woman, a hypothetical turn-around time between diagnosis and treatment is maybe three weeks. For an African-American woman, it is longer. We're talking about someone who may not be prepared to deal with the diagnosis, who must seek out the appropriate health care, who doesn't have as much help understanding the system, who has to take into account their jobs and their roles in the family. It's something you don't put on the front burner initially, you have to just sit and mull it over for a while."

She mentions a relative who chose a mastectomy because she couldn't afford the time that the more conservative treatment, a lumpectomy and subsequent radiation therapy, would require. At that point, she was helping her husband recover from a stroke and was the family's only source of income.

"She felt she couldn't go the hospital every day for six weeks," Ms. Hurdle says. "Most women of color are dealing with the financial constraint of getting back to work. And many of us have learned to be very quickly adaptive: To get something over with, to put it behind us and to get on with things."

Take, for instance, Myrtle Walker, chief of the campus police department at Coppin State College. She discovered her cancer through a low-cost screening mammogram program at St. Agnes Hospital, had surgery in February and was back to work in April. She has just finished her course of chemotherapy.

"The toughest part was finding out about the cancer," she says. "I had a mastectomy and got a prosthesis and I'm doing fine with it: You just learn how to wake up in the morning and put it on."

Ms. Walker credits the early detection of her cancer to her commitment to receiving yearly mammograms -- one sign that breast cancer awareness campaigns are working.

There is other evidence as well: A recent report published by the American Cancer Society shows an increased use of mammography. In the mid-1980s approximately 37 percent of all women age 40 and older had ever had a mammogram, but that number increased to 65 percent by the end of the decade. Within the black population, rates increased from 42 percent in 1987, to 66 percent in 1989.

Many believe these numbers speak to the grass-roots missionaries who are persuading women to seek breast care.

"It's important that women help themselves," says Ms. Toy of the National Black Leadership Initiative on Cancer. "As the saying went in the '60s: 'No one will save us but us.' "

SUPPORT GROUPS, EVENTS

The next meeting of the breast cancer support group Sisters Surviving is scheduled from 7 p.m. to 9 p.m. Oct. 19 at Liberty Medical Center, 2600 Liberty Heights Ave. For additional information about the group and the location of other monthly meetings, call Valencia Patterson at (410) 566-5000.

Other support programs in the metropolitan area include:

* Arm-in-Arm: Monthly meetings at St. Agnes and Sinai hospitals and the Women's Resource Center of the Greater Baltimore Medical Center. (410) 561-1650.

* Reach to Recovery (American Cancer Society): One-on-one counseling. (410) 931-6850.

* Women Beyond Mastectomy: Monthly meetings at Franklin Square Hospital (410) 682-7716.

* Wellness Community: Monthly breast cancer networking group Towson. (410) 832-2719.

For additional information about breast cancer services and treatment, call Maryland Cancer Control at (800) 477-9774 or the National Cancer Institute at (800) 422-6237.

*

The National Breast Cancer Coalition, a grass-roots advocacy group, will lead a march to increase funding for breast cancer research Oct. 18 in Washington.

Organizers hope to present 2.6 million signatures -- a figure from the American Cancer Society reflecting the number of living Americans diagnosed with breast cancer as well as estimates of those who don't know they have it -- to President Clinton as part of the effort to increase government support.

The march will begin at 11 a.m. at the National Museum of Women in the Arts, 1250 New York Ave. N.W., and proceed past the White House to the Ellipse.

Maryland will provide 48,000 signatures, says Marsha Oakley, president of the Arm-in-Arm breast cancer survivor support group and NBCC board member. For information about Maryland's participation, call (410) 252-7197.

Among other local events marking Breast Cancer Awareness Month:

* Maryland Public Television will broadcast two programs about breast cancer at 9 p.m. and 10 p.m. Oct. 13 on Channels 22, 28, 31, 36, 62 and 67. In conjunction with these broadcasts, area hospitals will sponsor panel discussions with oncologists, physicians, counselors and breast cancer survivors which are open to the public.

The Baltimore-area discussions include:

* Francis Scott Key Medical Center: 7:30 p.m. to 9 p.m. Oct. 20. Held at Harbel Multipurpose Center, 5807 Harford Road. (410) 550-0128.

* Franklin Square Hospital: 6 p.m. to 7:30 p.m. Oct. 20 in conference room 3 at the hospital, 9000 Franklin Square Drive. (410) 682-7482.

* The Greater Baltimore Medical Center: 9:30 a.m.-noon Oct. 16 in the fifth-floor dining room of the hospital, 6701 N. Charles St. (410) 828-3706.

* The Johns Hopkins Oncology Center: 5:30 p.m. to 7 p.m. Oct. 12 in the Glass Pavilion of Levering Hall on the Homewood campus of Johns Hopkins University. (410) 955-1287.

* Sinai Hospital: 6:30 p.m. to 8:30 p.m. Oct. 20 at Villa Julie College, 1525 Greenspring Valley Road. (410) 578-5640.

* St. Agnes Hospital: A day-long breast seminar from 8 a.m. to 3 p.m., including panel discussion, Oct. 15 in Alagia Auditorium, 900 Caton Ave. (410) 368-2930.

* Union Memorial Hospital: 7 p.m. to 9 p.m. Oct. 14 in the Memorial Auditorium of the hospital, 201 E. University Parkway. (410) 554-2800.

* University of Maryland Medical Center: Noon to 1 p.m. Oct. 14 on the 22nd floor of the First National Bank building, 25 S. Charles St. (410) 328-0723.

FREE MAMMOGRAMS

Low-income women without health insurance -- or those who are underinsured -- may qualify for free mammograms at many Baltimore area hospitals, thanks to a program by the state's Health Services Cost Review Commission, the group that regulates hospital charges throughout the state.

Twenty-eight hospitals in the state are participating in the Co-ordinated Breast Cancer Screening Program. Participants receive a mammogram, a breast examination and any follow-up diagnostic services -- such as a sonogram or surgical biopsy -- for a maximum out-of-pocket charge of $45, according to the state health department's Division of Cancer Control.

The three-year program is open to low-income women aged 40 and above who do not have health insurance as well as to those whose health insurance does not cover screening mammograms and those who cannot pay their insurance deductible. It is also open to low-income women who receive Medicare. Although women over age 50 are advised to get an annual mammogram, Medicare only pays for a mammogram every two years. The state's program will fill the gap.

All participants must meet income eligibility requirements set by the individual hospitals.

In addition, eligible women who are diagnosed with breast jTC cancer and/or cervical cancer can have subsequent treatments paid for with money from the Governor's Cancer Initiative Program, which is funded through the state's increased cigarette tax.

Another screening program is funded by the Centers For Disease Control and run by the state's 24 local health departments. It will provide mammograms, breast exams and Pap tests for uninsured or underinsured women. The guidelines for participating are similar to those used in the HSCRC program.

For additional information on these programs and to find out which hospitals offer them, call (800) 477-9774.

A traveling mammogram program, offered through the University Maryland Cancer Center's mobile mammography unit, also participates in the HSCRC program. The unit will provide mammograms to groups of women -- there is usually a minimum requirement of 15 -- anywhere in the state. During the past few years, it has served roughly 12,000 women. For information on this service, call (800) 787-0506.

SURVIVAL STUDY

As part of the Black/White Cancer Survival Study, a study by the National Cancer Institute, researchers attempted to discover why the breast cancers of African-American women are discovered at a later stage and why these women have a lower survival rate. Publication of the survival data analysis is expected in 1994.

The five-year project followed 1,200 cases of breast cancer diagnosed in 1985 and 1986. So far, the study's findings include:

* African-American women were diagnosed at a more advanced stage than whites and had more physical symptoms of breast cancer -- such as lumps, breast discharge and change in the appearance of the breast. They also tended to have the kind of cancer tumor which carries a more unfavorable prognosis.

* At the time of diagnosis, more African-American women than white women had symptoms of other serious illnesses, such as hypertension and diabetes, which could influence both their prognosis and their therapy.

* A lower proportion of African-American women had had prior experience with mammograms and/or physical breast examinations than white women. (More recent studies suggest this is no longer true.)

* There were no major differences between the quality of the diagnostic services provided for the two groups; for instance, researchers did not find evidence that physicians underestimated the severity of cancers in African-Americans or that they ordered less comprehensive medical work-ups.

* Some difference in cancer therapy occurred at similar stages in both groups. If there was a choice between a mastectomy or lumpectomy and radiation therapy -- a more conservative approach -- more African Americans than whites received mastectomies.

* Up to 50 percent of the higher risk for late-stage diagnosis may be accounted for by the tumor characteristics as well as by the lack of applying current breast cancer screening and prevention practices.

The study considered cases in Atlanta, New Orleans and San Francisco/Oakland. Researchers selected a random sample of women divided equally between black and white and matched by age.

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