Black Women Urged to Have Screening Mammograms, and Genetic Testing for Those With Strong Family History

NEW YORK--White women havea higher incidence of breast cancer thanAfrican-American women, but African-American women develop the disease ata younger age, are diagnosed later, andare more likely to die of the disease, accordingto the National Cancer Institute.

These concerns were front and centerwhen physicians, researchers, and survivorsgathered at "Breast Cancer inWomen of Color," a public meeting organizedby New York Presbyterian/ColumbiaUniversity Medical Center to raiseawareness, reassure women that help isavailable, even for the uninsured, andurge women to be proactive, even whentheir doctors are not.

Kathie-Ann Joseph, MD, MPH, abreast surgeon and assistant professor ofsurgery at Columbia University MedicalCenter, urged black women with a strongfamily history of breast cancer to get genetictesting. She cited a University ofPennsylvania study (JAMA 293:1729-1736, 2005) showing that African-Americanwomen with a family history of breastcancer are significantly less likely to bereferred for genetic counseling than whitewomen--regardless of differences basedon income, education level, or risk. Dr.Joseph told the audience, "If your doctoris not comfortable referring you to a geneticcounselor, go to another doctor."

She also pointed out that African-American women have genetic variationsof unknown significance. "We will senda woman for testing because she has astrong family history, and they will saythis person has a variant in their geneticmakeup, but we don't know what itmeans because we have not tested enoughAfrican-American women. We need totest more women of color so we understandthese variations," Dr. Joseph said.The Gail Model for breast cancer risk hasnot been validated in women of color orin some other ethnic groups, she added.

Part of the reason there is less geneticinformation in African-Americans, shestressed, is that patients may have concernsabout privacy and whether theywill be discriminated against if a test ispositive. They also may not want to shareinformation with other family members."That is one of the reasons we make sureyou see a genetic counselor, so all theseissues are addressed," she said.

Annette Brown, MD, of the Long IslandCollege Hospital MammographyDivision and president of the AmericanWomen's Medical Association of NewYork City, urged black women to returnto the American Cancer Society breastscreening guidelines of the 1980s, whichrecommended that all women receive abaseline mammogram sometime betweenages 35 and 39. (Dr. Brown recommendsage 35.)

"This is my bias and that of manyother black physicians I know," she said."There are so many young black womenwho have breast cancer and so many withfirst-degree relatives who have cancer.Who is paying attention to this part ofthe story? The answer is, nobody. I encourageblack women to follow the oldguidelines."

Dr. Brown also addressed the issue ofclinical trial participation. "Black peopleare less likely than other groups to participatein clinical trials," she said. "Ofcourse, we have a history, and a not sonice one when you remember the Tuskegeeexperiments. But the truth is, if wedon't participate in these trials, and nobodyhas any information on us, thennobody knows how to treat disease thatmay behave differently in black peoplethan in white people."

She used the metaphor of women andmen. "Remember when a woman wasconsidered to be a little man? You justgave a smaller dose than you did to themen. In this day and age, we know thatwomen may respond very differently tosome drugs than do men, and the diseaseprocess can be very different in women.Same thing for African-Americans. Becausewhite women respond one way toone kind of treatment, does not mean it'sthe best treatment for women of color.How are we going to know unless weparticipate in trials?"

She reassured the audience that withtoday's HCFA regulations and other safeguards,"researchers can't just do whateverthey choose. They can't just takeyour blood and not tell you what they dowith it. They can't give you medicationand not explain what it is. You can askquestions, and they must follow certaincriteria when you enroll in a study. So Idon't think you have to be scared aboutthose issues anymore. You just have tobe alert and ask the right questions."