Families with cancer in their genes get clues to staying well High-risk screening programs give them new hope

Hearshen, 67, and her daughter, Rachel, 35, who live in Farmington Hills, carry a genetic mutation that significantly raises their risk of getting either type of cancer.

Nancy Hearshen chose to have her ovaries removed to cut the odds she'd ever develop ovarian cancer. She's weighing a double mastectomy as another safeguard.

Her daughter, a 1996 University of Michigan English literature graduate who has returned to school at Wayne State University to become a teacher, has chosen a different path. Rachel Hearshen is single and wants to have a family someday.

She undergoes tests every six months and exams several times a year to look for any early signs of cancer. She also takes the drug Tamoxifen, which has side effects including hot flashes, to discourage cells in her breasts from becoming cancerous.

"It's like everything changed from that day forward," she said of her Feb. 17, 2009, diagnosis of the gene mutation known as BRCA2. Her maternal grandmother and aunt died of cancer and most likely had the trait without knowing it; testing was largely unheard of 10 to 20 years ago.

Families like the Hearshens have new resources as they weigh difficult choices about preventive care. More hospitals are developing cancer genetics programs that offer the latest in mammography and magnetic resonance imaging (MRI) tests to find cancer early, as well as teams of surgeons, genetic counselors and doctors who help patients and their personal support teams make major decisions about the issues they face.

Some hospital systems, such as the University of Michigan, began their high-risk breast cancer programs as far back as 1994. Since then, the Breast and Ovarian Risk Evaluation Program has seen about 1,800 patients and expects more than 200 patients this year. Other programs, including the High Risk Breast Program at Beaumont Hospital in Royal Oak, opened this year. More centers are expected in the years ahead.

"In 2010, genetics is not research," said Whitney Ducaine, a certified genetic counselor at Beaumont. She's trying to spread the word about facilities that have comprehensive cancer genetics programs and their importance.

The clinics cater to a growing population -- often families with cancer clusters among relatives before age 50 -- who want to learn whether they have gene mutations with a very high chance of causing cancer, sometimes as much as 90%. Though women typically outnumber men as much as 5 to 1, the clinics report they are beginning to see more male patients.

"A lot of men are motivated because of their children" to find out if they have a mutation they may pass along, said Kara Milliron, a certified genetic counselor for the U-M program.

Counselors at high risk breast and ovarian cancer clinics credit the public's increased willingness to find out if they carry cancer mutations with passage of the federal Genetic Information Nondiscrimination Act of 2008, which bans discrimination in health insurance against people who test positive for cancer mutations.

The same year, actress Christina Applegate went public with her story that she underwent a double mastectomy after finding a small, early tumor in one of her breasts. She carries a genetic mutation known as BRCA1. That, too, triggered an outpouring of calls, said Dr. Ruth Lerman, director of the Beaumont clinic, which opened in January, consolidating genetic services at the hospital.

Lerman brings much to the job, including three separate diagnoses of breast cancer. She's also an Ashkenazi Jew, a group that carries a higher incidence of cancer, but she has tested negative for gene mutations.

Beyond her contributions to the clinic as a doctor, Lerman started wellness, yoga and meditation groups called Silver Linings at Beaumont to teach nutrition, exercise and healthy mental habits, or mindfulness, to previvors -- the term that was coined for people who carry the mutated genes but have yet to develop cancer -- and survivors, who meet separately. She believes the alternative approaches make a difference, saying women who exercise vigorously for 45 minutes a day lower their breast cancer risk by 40%.

Ellyn Davidson, 39, of Huntington Woods started the Detroit-area chapter of Facing Our Risk of Cancer Empowered, or FORCE, a national nonprofit organization designed for people at risk of hereditary breast and ovarian cancer. Her involvement was a way to show her gratitude for the care she found at Beaumont following her own breast cancer diagnosis in August 2007.

Davidson, the mother of three children ages 4 to 10, is a managing partner at Brogan & Partners, a marketing firm in Birmingham. After she discovered that she carried the BRCA2 gene mutation, she had her ovaries removed.

"I always tell the story about how I had to get an injection the day before my mastectomy surgery and I went in alone," Davidson recalled. She said she went to lots of doctor appointments and tests by herself, including one to inject a dye to find out whether cancer had spread to her lymph nodes. "I saw it as a no big deal," she said.

Still, she appreciated how a staffer held her hand throughout the injection and "that kind of set the stage. I saw that at every level at Beaumont."

Christina Edwards, 29, of Windsor and her sister, Sarah Peterson, 25, of Roseville learned recently that each of them carries the BRCA1 gene mutation. They plan to wait it out for now with tests, doctor visits and breast self-exams. Their mother, Regina Peterson, 51, and oldest sister, Rachel Peterson, 31, both of Eastpointe, were diagnosed with breast cancer in the past year and later learned that they, too, carry the gene.

Before Sarah Peterson was given her test results, Beaumont counselors asked, in so many words, 'Can you take it?,' she said. They went over her options, discussed statistics and helped her make appointments for tests and doctor visits. The center also is helping Rachel and Sarah Peterson and Rachel Hearshen, all of whom are uninsured, find ways to pay for their care. Still, the Petersons need to find financial help for their tests and surgeries one treatment at a time.

Hearshen gets extra help from Project Chessed, a program with Jewish Family Services of Metropolitan Detroit for uninsured Jewish adults.

Sarah Peterson expects to eventually have a double mastectomy, if she can find a way to pay for it.

"I have come to terms with it," she said of her choices. Her mother's family has nearly a dozen people who have had cancer, some dying from it, and another half dozen who have tested positive for the cancer gene mutations in the past few years.

Edwards saw a genetic counselor in Canada in a 15-minute session. "All they told me was to get an MRI" along with referring her to a gynecologist and to a breast program for a mammogram. The next available mammogram appointment is in February, months longer than a typical wait of about a week at most clinics in the U.S.

"It's great to have all the free stuff (in Canada), but the major downside is you have to wait," she said. Edwards wants a baby, so she hopes to get counseling soon about fertility choices. Her husband, Ken, has told her, "We'll get through it together," and that he's OK with adoption, if that is the choice they make to avoid passing along the cancer mutation.

Edwards, the self-described crybaby of the family, has shed lots of tears since she learned she was a cancer gene carrier. Getting more than strict medical advice would have helped, she said.

Those feelings can be addressed in counseling, Ducaine said. Family members "come to me saying, 'I know I'm going to get this cancer. It's not if, it's when.'

"Genetic testing can be very empowering because it can help women and men know they don't have to wait around for cancer to happen. They can feel in charge."

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