DETROIT - Nancy Hearshen worries much more about her daughter's future than her own chances of getting breast or ovarian cancer.
Hearshen, 67, and her daughter, Rachel, 35, who live in Farmington Hills, Mich., 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, Mich., 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 percent. 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 University of Michigan 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 percent.
Christina Edwards, 29, of Windsor, Ontario, and her sister, Sarah Peterson, 25, of Roseville, Mich., 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, Mich., 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.
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.___
IF YOU'RE AT HIGH RISK
Some 5 percent to 10 percent of all breast cancer cases - about 16,000 new cases a year - are likely due to an inherited mutation of two breast cancer genes known as BRCA1 and BRCA2. Everyone has these two genes. When they mutate, they greatly increase the chance of several types of cancer developing in men and women. Some, however, never develop cancer.
Studies are under way to determine what causes some people with the mutations to develop cancer when others do not.
Men and women with a BRCA mutation have a 1 in 2 chance of passing the chromosomal abnormality to their children, whereas people without it cannot.
A positive test means a person has the mutation. A negative test result shows they do not. Tests often are covered by insurance, including those with Medicaid coverage who meet the plan's criteria.
Testing may cost as much as $4,000 - unless a mutation already has been discovered in a family. Then, costs drop to about $400 because it's easier to find a mutation once a precise chromosome has been identified.
Families with these gene mutations often have:
Many cancer cases in a family, especially breast or ovarian cancer.
One or more family members diagnosed with cancer before age 50 or relatives with several different types of cancer.
Male breast cancer or clusterings of colon, prostate, stomach or pancreatic tumors.
Any family relative who is of Ashkenazi Jewish descent and who has relatives who have had breast or ovarian cancer.
If you have those problems in your family, ask your physician about being tested for the gene and find out if the hospital he or she is affiliated with has a high-risk clinic or certified genetic counselors.
IF YOU HAVE THE GENETIC MUTATION
Carriers have the option of watchful waiting and tests; preventive strategies, also known as prophylactic surgery and chemotherapy; and what are called chemoprevention drugs, such as Tamoxifen, to lower the risk of cancer. Preventive surgery includes removal of the breasts or possibly of the ovaries and fallopian tubes.
Removal of both breasts lowers a woman's risk of developing breast cancer by as much as 90 percent, and removal of ovaries and fallopian tubes reduces the risk of ovarian cancer by 54 percent. Tamoxifen lowers a woman's breast cancer risk by 50 percent.
Carriers all are encouraged to:
Do breast self-exams beginning at age 18 and have exams performed by doctors starting at age 25, or 10 years before the youngest person in a family was diagnosed with cancer.
Have mammograms and breast magnetic imaging resonance (MRI) tests alternating every six months. Women who aren't finished with child-bearing should undergo semi-annual ultrasound tests and an ovarian cancer blood test, called CA125, beginning at ages 25-30.
WHERE TO GO FOR HELP
Many large hospital systems have counselors specializing in cancer genetics, and several have clinics for people at high risk of developing breast or ovarian cancer because they carry a genetic mutation.
Young Survival Coalition, a group of young women with breast cancer, www.youngsurvival.org.
State and federal laws protect consumers from health insurance discrimination based on genetic information.
Insurers can ask for proof of genetic information before they make payment decisions about tests and treatments, but they can't use that knowledge to deny you insurance.
For details about national laws, go to www.geneticfairness.orgCopyright © 2014, The Baltimore Sun