When JoAnn Lomax, MSN, RN, supervisor of the patient relations department at Froedtert Hospital in Milwaukee, was diagnosed with breast cancer in July 2002, her twin sister, Mary Ann Mosley, MS, RN, was at her side. “Mary Ann was with me because I was not about to hear that news, good or bad, by myself,” Lomax explains.
When her surgeon told her she had breast cancer, Lomax says she immediately got the worst headache of her life. Her sister had a similar reaction. “It was devastating to hear that she had breast cancer. It hit me between the eyes,” recalls Mosley, who is a clinical instructor in the college of nursing at Cardinal Stritch University in Milwaukee. “Even when [you’re a health professional] who works with cancer patients, it is still difficult to hear [when it happens to someone who is close to you].”
Fortunately, Lomax’s cancer was caught in the early stages by a mammogram. She had a mastectomy in August 2002 and then went through six months of chemotherapy. “In the journey through all of this, the only support I asked for and I wanted was from my twin sister,” she says.
Even though Mosley has been a nurse since 1971, her initial reaction to her sister’s diagnosis was fear. “The fear is still there,” she admits. But it has motivated her to become aggressively involved in helping to fight the disease. “Since this has happened to my sister I have armed myself with more information and knowledge and gotten more involved in the community of breast cancer awareness,” she says. “I have taken my head out of the sand. The more I work with this, the less fear is involved.”
As part of that work, Mosley has signed up to participate in the Sister Study. Conducted by the National Institute of Environmental Health Sciences (NIEHS), one of the National Institutes of Health, with additional funding from the National Center on Minority Health and Health Disparities, the Sister Study is the only long-term study in the U.S. of women whose sisters have had breast cancer. The researchers, who stress that this landmark study is not a clinical trial, plan to follow 50,000 ethnically diverse women for at least 10 years to learn how environment and genes may affect their chances of getting breast cancer.
Women are eligible to join the study if they are between the ages of 35 and 74; have a sister (living or deceased), related to them by blood, who had breast cancer; have never had breast cancer themselves; and live in the United States or Puerto Rico.
Sister Study participants receive a free kit containing all materials and instructions they will need. Initially, participants complete four questionnaires and a telephone interview, along with providing one-time samples of blood, urine, toenail clippings and household dust. The researchers will then follow up with the women once a year for the next 10 years. Sisters in the study who develop breast cancer over the course of the research period will be checked against a random sample from the cancer-free group for differences in exposure levels to biological and chemical agents such as insulin, solvents and pesticides.
According to Dr. Dale Sandler, the study’s principal investigator, “By studying sisters, who share the same genes, often had similar experiences and environments and are at twice the risk of developing breast cancer, we have a better chance of learning what causes this disease. That is why joining the Sister Study is so important.”
Lomax and Mosley are African Americans. They have a family history of cancer, including a cousin who died of breast cancer. But in their immediate family, Lomax is the only member to have been diagnosed with any type of cancer.
“[The Sister Study’s] goals are to [examine] what the connection is between family members and cancer, how it manifests itself,” Mosley says. “It is something that needs to be done to figure out if this is a genetic link or if it is just happenstance.”
Both women are aware of the fact that racial and ethnic minorities are not well represented in many medical studies. “From my nursing background, I know that African Americans [are often reluctant to] participate in research studies,” Lomax says. “It is very important [for us] to take part in these studies. Even though cancer may be cancer, I still think contributing to the study will allow for data to be collected and analyzed so that if there is [some cancer-causing factor] that’s unique and specific to the African American community, it can be identified.”
Her sister believes there are a number of reasons why people in general--and people of color in particular--do not take part in research studies. “My opinion is that minorities do not become part of major studies, first of all, because of the time commitment that is involved,” Mosley explains. “Secondly, they have an attitude of: ‘If I don’t know, there is no problem.’ I would encourage people [of color] to participate, because with knowledge you have power. The more you know, the better off you are.”
Researchers from the Sister Study are making an intensive effort to reach out to minority women, including African Americans, Latinas, Native Americans and Asians. Initially, recruitment for the study started in four cities in fall 2002: Phoenix, Tampa, St. Louis and Providence, R.I. These cities were selected for their size and their geographic, ethnic and socioeconomic diversity. The study is now nationwide, including Puerto Rico, and is in the last year of its recruitment phase.
Having as diverse a sample as possible is critically important, because women of color are harder hit by breast cancer than their majority counterparts. Statistics show that while white women are more likely to develop breast cancer than minority women, the latter are more likely to die from the disease. They are also more likely to develop the disease at a younger age.
“In recent years, for women under the age of 45, African American women have become the highest [impacted] group,” explains Dr. Paula Scarborough Juras, who serves as the NIEHS’ project officer for the Sister Study. “More young [African American] women are not only getting breast cancer but they also quite often have more aggressive forms of the disease. Many people believe [the reason for this disparity] is that minority women have less access to health care--but [that is not the whole story]. There are actual [physical] differences in the [types of] breast cancer that African American women are getting, and we do not know why.”
In addition, Juras points out that the incidence of breast cancer in Asian women and Latinas who are immigrants to America is higher than in their countries of origin. “There are many pieces of evidence that suggest the environment is affecting whether [immigrant] women will get breast cancer or not in the United States,” she says.
Juras has American Indian great grandmothers on both sides of her family. And, she says, the statistics concerning American Indian/Alaska Native women and breast cancer are grim. “Fewer Native women get breast cancer, but they are more likely to die of it and they are more likely to be diagnosed at a more advanced stage of the disease. Again, we do not have all the evidence to determine why that is.”
Genetic mutations, such as BRCA1 and BRCA2 abnormalities, put some women at an increased risk for breast cancer. “But,” Juras says, “really only 5% or 10% of women diagnosed with breast cancer have those genetic mutations. Also, fewer than 20% of women diagnosed each year have a family history of breast cancer, so we know there must be more going on [than just] genetic tendencies. This data, taken together with other evidence, is very suggestive that the environment is playing a role.”
These racial and ethnic disparities have led researchers to try and enroll as many women of color as possible in the Sister Study. “We have worked really hard to have the 50,000 women in the study be representative of the women in the United States. In fact, we want [an even higher percentage of] minority women in the study than are represented in the U.S population,” says Juras. “The more diverse the women we study, the better chances we have of finding associations between how the environment and our genes may influence breast cancer. The more diverse the women are, the more diverse their experiences are--such as the jobs they have, the places they have been and the products they use.” And that means the morestatistical power researchers will have to detect real results, she adds.
The Sister Study is partnering with a number of cancer prevention and advocacy organizations to help with its recruitment efforts, including the American Cancer Society, the Susan G. Komen Breast Cancer Foundation, Y-Me National Breast Cancer Organization and Sisters Network, Inc. These groups are supporting the Sister Study by using their own resources and activities to encourage women to participate.
To reach out to women of color, the study is also collaborating with organizations like the National Black Nurses Association, the Association of Black Women Executives, Native People’s Circle of Hope, the Office of Alaska Native Health Research, the National Alaska Native American Indian Nurses Association, Redes En Acción (the National Hispanic/Latino Cancer Network), Lambda Theta Alpha Latina Sorority and the Sigma Lambda Gamma Latina Sorority.
Nurses are natural candidates to spread the word about the study, Juras emphasizes. “In general, nurses have such close contact with so many women in the community, seeing them in the office or running into them in the grocery store,” she says. “Nurses are also looked upon as knowledgeable people who inspire trust. When nurses learn about the study and get excited about it, they can communicate that excitement to the women they are in contact with in the community. Minority nurses in particular are very aware of the unique impact of breast cancer in their community.”
The Sister Study has created a variety of multicultural educational materials that nurses can use to create awareness of the study. They include a video (available with Spanish subtitles), “Ask Me About the Sister Study” buttons, and brochures or flyers targeted specifically to African American, Latina, Asian and Native American women. These resources can be distributed in doctors’ offices and clinics, at health fairs, at breast cancer events such as Race for the Cure, and in community locations such as hair salons, churches and senior centers.
“I think it is important for minorities to be involved [in the Sister Study], because in many of these studies there is a very low percentage of us that participates. Therefore, the information that is gleaned is really about the Caucasian population,” Jackson says. “We never get to find out if our case is unique. If we participate, more of the data that would come back would be relevant to us.”
Jackson became involved with the Sister Study as a member of the advisory board when the project first started. Many Breakfast Club members, she says, tested the materials for the study. “We did the kits, filled out the forms, so we could actually tell other women what was involved in participating,” Jackson explains. “Part of the reason I wanted to go through it was so I knew exactly what it was and what it entailed. Being on the advisory board gave me the opportunity to meet the people [running the study], and that gave me a lot of confidence [about the project].”
Jackson’s sister, Connie Orr, had no hesitation about joining the Sister Study once her sister told her about it. “I was very excited about it. Anything she would ask me to do, I know it would be a good thing and my answer would be yes,” Orr says. “With the Sister Study, it felt like you were going to be part of something that was going to lead to a better understanding of the causes of breast cancer. I was glad to help out.
“I feel like the Sister Study is asking very little of you to participate. It is not an invasive study,” she adds. “There is so much that you can’t do to help your sister [when she has breast cancer]. This is one way that you can help. I feel a little more empowered because I am making a contribution.”
According to Juras, the Sister Study researchers have worked hard to make the study as participant-friendly as possible. “We have gone to very great lengths to keep all the information people give us private and confidential. Even the Supreme Court cannot subpoena it,” she explains. “We also have made the study safe. Participants do not have to take any medications. We are not testing medications. We are not a clinical trial. We do not ask participants to make any changes in their daily lives. Our interest is to find out what is causing breast cancer.”
Approximately 25,000 women are enrolled in the study to date. “There is a real urgency now. We are in our last year of enrollment,” Juras says. “We are very excited about how many women have joined us, but we need to complete this stage and move forward. So it is urgent that women join us now.”
To learn more about the Sister Study, visit the Web site www.sisterstudy.org, or call toll-free (877)-4SISTER (877-474-7837).
Editor’s Note: Minority Nurse senior editor/editorial manager Pam Chwedyk is a breast cancer survivor whose two younger sisters are both participating in the Sister Study.