Sisters Unite

May 2006 Special Advertising Section

When Carol Meyers got a tearful call from her younger sister in 1997, the two siblings were only a few states away, but the distance felt insurmountable. Learning that her sister had breast cancer, Meyers knew there was only so much she could do to help her sister in the fight against the disease.

“She’s in Ohio and I’m in Wisconsin, and I felt so helpless,” Meyers says. “Even if we lived close together, though, I would still have that sense of not being to do anything, of not helping her as much as I wanted.”

Last year, however, Meyers got the chance to help her sister in a different way, when she began to participate in the c, a research study being conducted by the National Institute of Environmental Health Sciences, one of the National Institutes of Health. The study is examining the genetic and environmental links between women who have had breast cancer and their sisters.

So far, more than 25,000 women have signed up since the project’s launch in 2004, in what has become the only long-term study of women aged thirty-five to seventy-four whose sisters have or had breast cancer. Within the next three years, researchers hope to have at least 50,000 participants nationwide.

The study is fairly straightforward, asking participants to fill out an extensive questionnaire about their childhoods, product use, family health history, and diet. Female examiners connected with the study visit participants in their homes and draw blood and urine samples, and collect house dust and even toenail clippings.

Although the results of the study won’t be fully known until it’s completed in ten years, researchers expect to have at least some answers by the end of 2007. The study is designed to help researchers understand how women’s genes, as well as environmental factors, might influence the risk of breast cancer. “We hope to find ways to prevent women in future generations from getting breast cancer,” says Paula Juras, MD, the NIEHS project officer for the Sister Study. “If we can identify things in the environment that affect how the body clears toxins or absorbs nutrients, for example, we have a much better chance of lowering the incidence of this type of cancer.”

For the women in the study, their participation has particularly strong significance. Women like Meyers feel they’re able to make a difference through their involvement, and perhaps help prevent breast cancer in their daughters and granddaughters. “In a way, I feel as though all women are my sisters,” she says. “I’m doing this for all of us.”

The Family Connection
While there have been many studies to examine the connection between women who have breast cancer and their mothers and grandmothers, looking at the link between sisters is also vital for understanding the disease, Juras says. “Sisters are in the same age group, and have also been exposed to the same environmental things,” she says. “Also, they tend to have similar lifestyles, and live near each other.” The NIEHS would also like to embark on a study with mothers and daughters, but because of the age differences, the research would take decades. The Sister Study’s ten-year span may seem like a long time, but a similar study of the general population would take even longer.

While sisters are involved in their siblings’ disease, being part of a study helps alleviate some of their fears when they learn a sister has cancer, says Leslie Foreman, nurse clinician at The Breast Center of United Hospital in St. Paul.

“Many women do come in because their sister or mother has breast cancer, and they’re worried about their risk,” she says. “Taking a more active approach, like putting a plan together with us, or doing more with prevention, does seem to help. Certainly the Sister Study has motivated a lot of women to feel passionate about the issue and get more informed.”

Another recent study by the University of Minnesota examined the role of Omega-3 fats in relation to women with breast cancer and their sisters. One Minneapolis participant, Jodi Ritacca, expressed the type of anxiety about the disease that is common among women with breast cancer in their family history. Her sister, Chris, had been in remission before the cancer reappeared last June.

“My sister and I are only thirteen months apart, and I think I do all the right things and eat properly, but so did she,” Ritacca says. “If she can get it, why not me next time?”

Being in the U of M study didn’t alleviate those concerns for Ritacca, but it did make her feel as if she was contributing toward a cure, rather than just hoping for the best. “Maybe there’s something in the study that would help save my sister’s life, or the life of someone else’s sister, or even my own life,” she says. “When you can make that kind of difference, it overrides that sense of anxiety.”

Other women in the state have also noted that being part of a study gives them a sense of momentum, as well as optimism. Simply giving information or showing willingness to be part of a study or clinical trial can seem minor, but they feel the effects could be major down the line.

When Lilly Berman, a Twin Cities native, found out she had breast cancer only two months after her sister, Evie

Ingber, received the same diagnosis, both women were asked to be part of a clinical drug trial, and neither hesitated for a moment. “We both had the same idea, that we wanted to be part of it because we’d be going through treatment anyway, so why not do some good at the same time?” Berman says. “We were already sharing the experience of being diagnosed and going through chemotherapy, so we figured what the heck, we can do this together, too.”

Study participation also illuminates the high risk factors that come with having a sister who has the disease. Meyers notes that before she signed up, she had no idea that her cancer risk was 50 percent higher than other women.

“To say it was eye-opening is an understatement,” she says. “I don’t feel anxious, because it will either happen or it won’t. But at least I know my risks, and if it does happen to me, I’ll feel good for having participated in the study.”

Working Toward a Cure
Those involved with breast cancer—at any level, from academic to personal—know it will take time and a great deal more research to find the kind of answers that can help eradicate the disease in the future. Still, researchers are hopeful that if they extend the studies past the United States, and involve a wider variety of women, maybe those answers will come just a bit sooner.

The Sister Study has been active in encouraging minority women, older women, and those in non-traditional occupations to join in the project, so that the range of subjects can be expanded. “The more diverse our group, the more diverse the environmental exposures will be,” Juras says.

There’s also hope that studies being done in countries like Jamaica and Mexico will broaden the research pool, says Irving Lerner, medical director of oncology services at United Hospital. “There’s a level of involvement now, even from places that are way behind in research and prevention,” he says. “That’s a very positive step forward.” 

The Genetic Connection Sisters of women who have had breast cancer have twice the risk of getting the disease than other women, according to Paula Juras, National Institute of Environmental Health Sciences project officer for the Sister Study. Women who have breast cancer in their family’s history through mothers, grandmothers, or other female relatives also have a higher risk factor, she adds. Although studies have noted that there are some gene mutations that could account for higher incidence of cancer in some families, those mutations tend to affect only about 5 to 10 percent of the population, Juras says.  While she doesn’t recommend automatic genetic testing, Juras does note that women with a family history of the disease should be checked more frequently, and perhaps even do more self-examinations than other women. And for those who do have a strong chance of the mutations, genetic testing may be appropriate. This group includes women with an inherited BRCA1 or BRCA2 mutation, who have up to an 80 percent chance of developing breast cancer during their lifetime, and at a younger age than those without this genetic component. These women also have an increased risk for developing ovarian cancer. While most women won’t need genetic testing, if there’s significant family history and concern about genetics, women should talk to their physician about the benefits and drawbacks of this kind of testing. And women who have a sister with breast cancer or a past experience with the disease and would like to be part of the Sister Study can find eligibility requirements, applications, and extensive information at sisterstudy.org.