By all accounts, breast cancer survivor Yvonne Durham was lucky.
"It was the Friday before Mother's Day of 1992," she said. "I had had a biopsy of a lump in my left breast. And a man walked into the room and told me I had breast cancer."
"I was shocked. I was just totally shocked."
After her diagnosis, Durham began a long road of treatment that included surgery, radiation therapy and hormone therapy with the drug Tamoxifen.
The treatment may be a major reason she is alive today. But a new study suggests that black women like Durham may be three times less likely to receive chemotherapy and five times less likely to receive Tamoxifen than their white counterparts.
"I had an excellent doctor, and in my heart I don't want to think that black women get different treatment," said Durham, who added that she was pleased with the level of care she received. "But sometimes I've noticed that doctors tell their white patients more than they tell us."
And when it comes to breast cancer, knowledge is key.
"For example, I had a white girlfriend with breast cancer who asked me if I was Her2 receptor positive. I didn't know what she was talking about," Durham said.
"My friend was no more educated than I was. But these receptors were explained to her. Staging was explained to her. I knew I had a good doctor, but I didn't know anything about these things."
White Women More Likely to Get Chemo
Whether because of breakdowns in doctor-patient communication or some other factor, disparities between the treatment of black women and white women with breast cancer exist, according a new study published today.
Researchers at the University of Michigan and Wayne State University found that among women with breast cancer that had spread to lymph nodes, white women were three times as likely to receive adjuvant chemotherapy and almost five times as likely to receive Tamoxifen, a common hormonal drug for breast cancer.
The study examined medical records from 651 women diagnosed with breast cancer at a major university hospital and cancer center in Detroit from 1990 to 1996. Of the women, 242 were white and 388 were black.
Previous studies had also shown differences in treatment rates between blacks and whites, but discerning the reasons for the differences was often difficult.
Blacks, for example, have been found to have a higher percentage of breast cancers that are "estrogen receptor negative," meaning they will not respond well to traditional hormone treatments such as Tamoxifen. Lower socioeconomic status, later stage at the time of diagnosis and several other factors had also been cited in the past as a possible reason for the disparities.
The researchers looked at women who had both "local stage" — cancers confined to the breast — as well as "regional stage" — cancers that had either spread to lymph nodes or physically extended outside the breast.
They then catalogued the types of treatment used. This included types of initial treatment such as mastectomy or breast-conserving surgery (such as lumpectomy) plus radiation, as well as "adjuvant," or supplemental, treatments like chemotherapy and hormone therapy with the drug Tamoxifen.
"Our goal was to do a comprehensive analysis, looking at factors such as socioeconomic status, co-morbidities, access to care, age, insurance status and others," said lead study author Mousumi Banerjee, a researcher at the University of Michigan School of Pubic Health. "When we adjusted for these, there was still a difference in the group with regional disease."
In women with regional-stage disease, whites were more than three times as likely to have received adjuvant chemotherapy and more than 4½ times more likely to have received adjuvant Tamoxifen. Banerjee said, "They were definitely noticeable differences."
Signs of Hope
Although the differences in treatment were cause for concern, there were some encouraging signs as well in the data.
Previous studies had shown differences between blacks and whites in rates of "breast-conserving" surgeries such as lumpectomy and adjuvant radiation — differences that were not seen in this study. There were also no significant differences seen in rates of Tamoxifen or chemotherapy use for local-stage disease.
"Usually surgery is part of the treatment," said Dr. Beverly Moy, a medical oncologist at the Massachusetts General Hospital. "But for some cancers, it is completely equivalent to do mastectomy versus lumpectomy plus radiation. Given an option, most women would choose keeping their breast. So it was nice to see similar rates of mastectomy and breast-conserving therapy (between blacks and whites) in this study."
Why the Difference?
Most experts were not surprised by the results of the study, but stated that figuring out why the differences existed would be difficult.
"It is sometimes very difficult to determine whether disparities are due to race or other factors," said Moy. "But in my opinion, race is a very important factor to consider."
"It is probably multifactorial," said Dr. Herbert Smitherman Jr., assistant dean of community and urban health at the Wayne State School of Medicine in Detroit. "The choices that people make are clearly a composite expression of their social and cultural circumstances, their conditions of living and the conditions of their community."
Smitherman adds that one factor may be physicians' ability to communicate effectively with their patients.
"There has been some literature showing that physicians' perception of the patient may be affected by race," said Smitherman. "This includes perceptions of patients' ability to understand choices, a sense of affiliation with patients and the ability to engage patients."
"When we walk into a patient's room, it's not like there's pixie dust and we leave everything back at the door."
Kendra Schwartz, study co-author and professor of family medicine at Wayne State, said this possibility highlights the need for physicians to be more cognizant of their interactions with members of a different race.
"We really need to ask the patient explicitly — 'what have you been told? What are your feelings about the treatment options?'" she said. "There are often people who initially don't want chemotherapy because of side effects, but if they are educated about how therapies improve survival, things can change."
Breaking Down the Walls
On the other side of the patient-doctor relationship, some worry that a history of distrust of the medical establishment among members of the black community may also be affecting patients' medical decision-making.
"There is some, perhaps appropriate, distrust of the medical community," said Smitherman. "It's been shaped from the Tuskegee study on down, and this is passed down through the generations," he added, referring to a notorious study in which black men were not informed of their diagnosis of syphilis, and in some cases, were denied treatment.
"All sorts of perceptions in society can affect the relationship with the physician. Patients ask themselves, 'can I trust this person with my life?'"
Breast cancer survivor Durham said she believes there are additional cultural issues that may play a role in patients' abilities to make the right choices.
"Some women, especially in our [black] culture and especially older women, may think of doctors as such an authority figure, they are afraid to ask questions and afraid they may sound stupid."
One possible solution is that patients diagnosed with breast cancer particularly blacks need to take a more active role in educating themselves and advocating for their choices.
"I would say, you're [the patient is] going to have to educate yourself," Smitherman said. "Part of being in the health-care system is that you have to get knowledge. You'll have to get on the Internet and look up stuff, and come prepared when you come into the physician's office."
"Write down your questions. Just like when you go to your accountant, or church, or a talk, be prepared ahead of time."
Durham agreed that patients need to have the ability to take ownership over their disease. Today she works as a program specialist for Encore Plus, an outreach and education program for breast and cervical cancer targeted at minority and medically underserved women.
"When I'm out in the [black] community talking about breast cancer, I tell people, 'we have to be our own best advocates.'"
"Patients need to talk to other women that have the disease, go into a support group setting. Where you lack understanding, search for it until you get it."