Studies giving more insight to breast cancer disparities
Among one of the biggest challenges regarding breast cancer – and one of its remaining mysteries, despite all the medical and technological advances regarding it – is the fact that breast cancer strikes women of different ethnic and cultural backgrounds in different ways.
Disparities show up in many areas of health, from rates of infant mortality to access to medical care. Breast cancer, according to various studies, often shows up as more aggressive and more deadly in minority women even though white women have the highest incidence of the disease.
There’s a whole host of factors that contribute to these differences, said health care professionals, and while the problem of disparities in breast cancer are nothing new, there is new information about the biology of the tumors and new approaches to tackling the disparities.
“I think it’s been noticed for a long time, it’s been studied for a long time,” said Dr. Robyn Young, medical and clinical director of breast cancer at the Center for Cancer and Blood Disorders.
Young said there are at least several decades’ of data that demonstrate disparities, and more recent studied have confirmed the disparities and given more insight into the kinds of tumors minority women develop.
For example, a May 2007 article in CANCER, the journal of the American Cancer Society, showed Hispanic women are on average younger when they are diagnosed with breast cancer than non-Hispanic white women, 56 years old versus 61 years old, and regardless of how old the Hispanic women are, they are almost three times more likely to be diagnosed with stage IV disease, which is cancer that has already spread beyond the breast. Hispanic women also are about twice as likely to develop estrogen-negative cancer, a type of cancer that doesn’t have receptors for estrogen and is therefore harder to treat.
This summer, the Journal of the National Cancer Institute published a study that found black women also are more likely to develop estrogen-negative tumors. However, when compared to white women who also had estrogen-negative tumors, the black women still had a higher probability of dying of the disease, pointing out that there is more than just tumor differences that are leading to worse outcomes for minority women.
“That is your gut feeling, that the reason has probably not a major thing to do with the fact that there’s something genetically involved with ethnic groups as much as it is different ethnic groups have different barriers,” said Betty Nethery, herself 15-year breast cancer survivor and a longtime volunteer with Tarrant County’s Susan G. Komen for the Cure.
Nethery has spent a significant amount of time learning about breast cancer disparities and working on local programs that reach out to minority women and educate them about the disparities and ways they can be proactive with tackling the disease. Pink Sunday, for example, is a program started about four years ago by Komen to reach out to women through their churches, and it’s roughly doubled every year since it started. This year, Pink Sunday was Oct. 25, Nethery said, and women got information from a person in their church, someone they already trusted and listened to.
Carlene Thomas-King, broker and owner of Tybrion Realty, was diagnosed with breast cancer in late 2007 and finished treatment in the middle of 2008. She also volunteers with Komen and tries to reach out to other black women like herself, and she said reaching out to minority communities through churches is effective. However, not only is there a lack of education about the risks of breast cancer and where to find screening regardless of financial or insurance situations, but is there also a current of fear and denial that runs through some communities.
“There is a big lack of knowledge out there, and I don’t know it’s as much a lack of knowledge as much as a fear of knowing,” she said.
Thomas-King said she’s seen women know there’s something wrong and yet refuse to seek a diagnosis or to move forward with treatment. Sometimes there an ostrich-in-the-sand mentality: If it’s not confirmed, then maybe it will go away. This can cause women to be diagnosed when the cancer has become worse.
Young said women are often caregivers themselves, taking care of children, family members and friends, and so may be reluctant to focus on themselves for something like screening for breast cancer. She said she tries to tell women that in order to take care of others, they need to take care of themselves.
The fear of a confirming diagnosis doesn’t just keep women from helping themselves get treatment, but it is also a hindrance to medical research that could help those women and women in the future, Young said.
Clinical trials often have a hard time recruiting enough minority women to accurately mirror the population, and while historically there are reasons for minorities to be wary of clinical trials – like the Tuskegee syphilis experiment – there is no reason for people to be wary today. The more minority women participate in trials, the more knowledge will be available to develop future treatments that will better aid them, she said.
While health care professionals are reaching out to black and Hispanic women, disparities also can fall along other lines. Illegal immigrants who not only may have language barriers but also serious barriers with access to care represent a huge disparity, said Craig Schaefer, executive director of Cancer Care Services.
Undocumented patients can receive care in emergency rooms, Schaefer said, and so many get a cancer diagnosis there, but the question of long-term – and expensive – cancer treatment and follow-up is a difficult one, since physicians or institutions may be reluctant to take on these patients who don’t have insurance and don’t qualify for government aid.
“They can get diagnosed, but then what do they do?” Schaefer said.
Foundations like Komen are making a huge push to screen and diagnose women, and people are trying equally as hard to make sure those women get treatment, said Tricia Phillips, a patient navigator employed by the American Cancer Society who works at the JPS Center for Cancer Care. Education, screening and diagnosis have to become more widespread in minority communities to tackle disparities, she said, and there also has to be a financial commitment to treat these women and all women who may or may not have insurance or other monetary assistance.
People who work in health care organizations and foundations awarding funding or allotting resources may be forced to objectify patients as purely numbers, Phillips said, but when everyone commits themselves to treating individuals, then it becomes more pressing to find a way to close the gap on disparities.
“It is different than when they’re there with you and their family is looking
at you, and you’re their only hope,” she said.
