“How did I get this?”

It’s a question oncologist Bonni Guerin, MD, hears time and again, sitting across from one woman and then another as she breaks the devastating news that she has breast cancer. It’s also a question that helped to spark the genesis of the new High Risk Breast Cancer Prevention Program at the Carol G. Simon Cancer Center at Overlook Hospital. Through a combination of screening, counseling, and genetic testing when indicated, the initiative provides women with a clearer picture of their true risk for breast cancer—and provides preventative strategies for minimizing that risk. “Although there isn’t a smoking gun as there is with lung cancer, there are things we can do to help with prevention,” says Guerin. “It’s time to take the next step beyond detection and challenge the healthcare establishment to work toward prevention. We’re curing most people with breast cancer in 2009 and we’re curing more breast cancer than ever before, but we can take another step and talk about breast cancer prevention. We have a variety of new ways to detect breast cancer, but we need more attention paid to preventing the disease.” That’s where the High Risk program comes in.

Unraveling the risk

“I can’t believe how often I hear, ‘I have no family history. My mammograms are clear. I don’t have any risks,’ ” says Guerin. “But I can guarantee that many of these women haven’t had a vitamin D evaluation, and vitamin D deficiency is linked to breast cancer.”

With one woman in eight being diagnosed with breast cancer, no woman shouldn’t feel at risk. And, in fact, most of the women who enroll in the High Risk program have never had breast cancer … and they’re hoping to keep it that way (women undergoing cancer treatment or women who have had breast cancer are also encouraged to participate). Each participant receives a lifestyle assessment with Doreen O’Boyle, RD, CSO, a registered dietician board-certified in oncology nutrition. O’Boyle takes a history of what she eats and measures body-fat percentage, body-mass index, and activity levels. “I ask women if they’re eating fruits and vegetables, if they’re eating three servings of whole grains daily, if they’re eating a lot of red meat or processed meats. I ask if they drink alcohol, and if they consume more than one alcoholic drink a day. All of these correlate with risk,” she says. “Then we discuss what they might want to tweak. I explain how what they eat may increase or decrease risk. I educate them about the association between being overweight and developing post-menopausal breast cancer. We discuss how to exercise to maximize heart rate and actually get something out of exercising.”

O’Boyle cautions that there is no one particular food or particular behavior that offers protection—it’s more about weight management and a healthy diet. “Weight is a big issue,” says Guerin. “Increased body fat leads to increased risk not only for breast cancer but for heart disease, arthritis—even a decreased libido.” The belief is that excess body fat produces excess estrogen, which raises a woman’s risk profile.

“We concentrate on changing the things one can change,” says O’Boyle. “You can’t do much about your genetics or hormonal profile, but you can change your eating habits and physical activity level. When we see patients who are already sick, it’s hard to switch around their diet; they’re already coming from behind. That’s why the High Risk program is so great. We’re seeing people who may be able to make a difference, not people who are already sick and are trying to battle back.”

Understanding the breast cancer genes

The majority of breast cancer diagnoses are not related to family history, but one of the greatest advances in understanding breast cancer is the proof that, for some women, certain gene mutations are responsible for their cancers. Chief among these are the BRCA1 and BRCA2 genes, which create a risk that’s disproportionate to the general population; women who carry either gene have up to an 85 percent lifetime risk of developing breast cancer and also a significantly increased risk for developing ovarian cancer, explains Jessica Heinzmann, MS, a certified genetic counselor.

These genes are detected through a simple blood test, but before a woman gets to that point, she and Heinzmann discuss the indications for testing as well as the implications. “My role before any genetic testing is done is to do a three-generation family tree that looks for red flags,” she says. “More than one breast or ovarian cancer diagnosis in a family is a red flag; breast cancer before age 50 is a red flag. We do a thorough risk assessment and also discuss the implications of a positive test result. If someone tests positive for a BRCA1/2 mutation, we would know that they are at high risk, but not at 100 percent risk. We discuss medical management, implications for other family members, and insurance issues. Women want to know, ‘If I test positive, is my health insurance company going to discriminate?’ There are laws in place at the federal level and at the state level that protect people. You can’t be dropped from your health insurance and premiums cannot be increased.”

Although the implications of having the gene are heavy, the benefits of knowing about it can help to offset the risk. “If someone has the test and she does find out she has increased risk, we can do things to manage the risk—such as increased surveillance, risk-reducing surgeries, and chemoprevention,” Heinzmann says. “My goal is that women be comfortable with their decision to have the test, because once we do it, we can’t take it back. By the end of the session, people usually are ready to make a decision that’s right for them. In general, most women go through with it.”

Heinzmann does see a number of women who seek out the program because they know their family histories are significant, or because they have had breast cancer themselves. “If they’ve already dealt with cancer,” she says, “oftentimes they want to provide information for their children and grandchildren regarding their possible cancer risks. If they’re found to carry one of the genes, other family members can be tested. I’ll often see their sister, mother, daughter—other relatives. There can be sensitive issues: One person in the family may get good news, but one may find out she’s at very high risk. I’ve seen women who are 88 and test positive for a BRCA mutation have no cancer, but their daughters, who have the same BRCA mutation, are in their forties and have cancer. Why is that? We don’t have that answer at this point in time. We don’t have a crystal ball. So we need to treat everyone as a high risk.”

The big picture

Following their sessions with O’Boyle and Heinzmann, women meet with Guerin, who ties together both the lifestyle assessment and the genetic evaluation. “Breast cancer has no boundaries—it crosses age, race, economics. But I communicate to women that we’re not powerless against this disease,” she says. “This is about prevention, just like pap smears, skin checks, and colonoscopies.

“Women have a million questions: “Do I have to worry about my daughters?’ ‘What about underwire bras?’ ‘What about breast-feeding and nipple discharge?’ We answer those questions and also look at their mammogram history. Some centers don’t have up-to-date machines or dedicated breast radiologists or computer-assisted detection technology. Other centers don’t offer supplemental ultrasounds or MRI.”

By bringing together a complete picture of a woman’s risk factors, Guerin is able to target specific areas that may yield the most protection. A woman at risk because she’s overweight, for example, can work on shedding excess pounds. A woman at risk because she drinks more than one alcoholic beverage daily can be informed that she should cut back. “If a woman is at risk because of hormones she’s taking, we’re able to make adjustments so that she’s not at as high a risk,” she says. “Or perhaps a woman needs changes in her imaging; mammograms can catch precancers, but only if done properly.” For women who truly have very high risk, there are hormone-blocking medications that can significantly reduce the chance of her ever getting a breast cancer. There are even mastectomies and reconstruction for women who are at inordinately high risk.

Armed with so much personalized information, most women leave the program feeling empowered, not haunted. “I can’t tell you how satisfied women are,” Guerin says proudly. “They come here for three hours devoted just to them. It’s an opportunity to talk about diet, sexuality, hormones, fears; it’s the time to address important questions. It’s really a great morning—not quite like being at a spa, but it still leaves you feeling good about yourself. A three-hour investment to try to prevent the No. 1 killer of women 19 to 24 sounds like a good deal.

“My overall hope is that with the increased attention to individualized medicine, institutions around the country will realize breast cancer is not just about detection and treatment, it’s about prevention. I have two young daughters of my own,” Guerin says. “I want to see pink ribbons in their hair, not on billboards.”

The High Risk Breast Cancer Prevention program is held on alternate Wednesdays, through the Carol G. Simon Cancer Center at Overlook Hospital; most insurances are accepted. For more information or to make an appointment, call (888) 798-8734.