Y-ME'S WALK TO EMPOWER
What: 3-mile noncompetitive walkWhen: Check-in begins at 7:30 a.m. Sunday; walk begins at 9 a.m.Where: Kennedy Park, 2400 S. Bayshore Dr., Coconut GroveTo register: Go to http://miamiwalk.y-me.org. There is no fee, but Y-ME encourages participants to raise $100 to support the organization's breast cancer programs.LEARN MOREJoining FORCEs: The third annual Symposium on Hereditary Breast and Ovarian Cancer, sponsored by Facing Our Risk of Cancer Empowered, is May 16-17 at the Hyatt Regency in Tampa. The keynote speaker is Jessica Queller, author of ''Pretty Is What Changes,'' a memoir about her double mastectomy to prevent hereditary breast cancer. The cost is $150. Visit www.facingourrisk.org.LOCAL GROUPSYour Bosom Buddies, a support group, meets the third Thursday of the month at the Women's Health Resource Center at Baptist Medical Arts Building, 8940 N. Kendall Dr. Next meeting is May 15. Call 305-981-2974.• Susan G. Komen for the Cure,www.komenmiaftl.org or 305-383-7116. Collaborating with Your Bosom Buddies, the foundation sponsors A Buddy For You, assigning newly diagnosed breast cancer patients with trained mentors. Call 305-450-5223.• Y-ME National Breast Cancer Hotline is staffed 24 hours a day by breast cancer survivors trained as peer counselors, 800-221-2141 for English; 800-986-9505 for Spanish.CONGRESSIONAL ACTIONPeople reluctant to take a genetic test for fear of discrimination can take heart: Congress has just passed the Genetic Information Nondiscrimination Act (GINA) that prohibits businesses and insurance companies from using genetic testing to deny employment or health coverage. The Senate vote was unanimous; the House vote was 414-1. President Bush is expected to sign the bill into law.One evening five years ago, Debbie Brooks, 44, phoned her mother: ``Hey, Mom, I need to talk to you.''
She and her boyfriend drove to Kendall, where they sat at her mother's kitchen table. Face to face with her mother, Rhoda Brooks, Debbie couldn't speak.
'My mother looks at me and says, `You're pregnant!' She was furious because we weren't married. So when it came out that I had breast cancer, it was no big deal.''
Debbie and Rhoda dissolve in hyperbolic laughter, then bicker about the memory the way mothers and daughters do. Sobering up, Rhoda recalls the ''devastating'' shock of realizing her only daughter, the divorced mother of her 13-year-old grandson, had cancer. 'All I kept saying was, `It should have been me, it should have been me.' ''
Eventually, it was. As Debbie finished treatment, Rhoda's tumor was found.
When mother and daughter have breast cancer, the odds double to about 20 percent -- or higher for certain ethnic groups -- that the disease is hereditary, said Dr. Stefan Glück, clinical director of the Braman Family Breast Cancer Institute at the University of Miami's Sylvester Comprehensive Cancer Center.
Today, women with breast cancer, or with a high risk for it, face a complex choice -- whether or not to take a DNA test to search for a genetic link to their disease. Some women embrace the testing as a gift that could save their life, or that of their daughter. Others don't want to know, or feel a paralyzing ambivalence. Many are concerned the test results could be used against them to deny health insurance.
''It's a difficult decision,'' Glück said. ``I don't know what I would do in that situation.''
In the mid-1990s, researchers pinpointed two breast cancer-related genes, BRCA1 and BRCA2. Women with mutations in either genes have a high risk of developing breast cancer -- between 36 percent and 85 percent over a lifetime, compared with 13 percent for women with normal BRCA genes.
The mutated genes also are responsible for about 60 percent of hereditary breast cancer cases, said Talia Donenberg, a Board-certified genetic counselor at UM's Center for Cancer Prevention and Genetics.
While the overwhelmingly majority of breast cancer cases are not hereditary but ''sporadic,'' more than 250,000 women in America are estimated to have a BRCA mutation. Most of them have not been tested. (It's a simple blood test.)
Glück treats two mother-daughter pairs for breast cancer. One pair has no detectable genetic mutation; the other pair does. Glück recommends genetic counseling for his high-risk breast cancer patients -- those with a multigenerational family history, those are diagnosed before age 50 or those in an ethnic group more prone to the mutation, including more than five million Americans with Ashkenazi, or Eastern European, Jewish heritage. UM researchers also are pinpointing specific BRCA mutations in Bahamian and Hispanic women.
Women who test positive for a BRCA mutation can take preventive measures, from stepped-up screening to the surgical removal of their breasts and ovaries. The surgery reduces their risk of cancer by more than 90 percent.
''It's a drastic approach, but it's an effective approach,'' said Margaret Pericak-Vance, director of UM's Institute for Human Genomics.
Sue Friedman wishes she had known about her genetic pathways.
In 1996, at 33, Friedman was diagnosed with breast cancer and had a mastectomy. Her son was not quite 2. No one recommended genetic counseling, despite ''three major red flags'' -- her young age, Ashkenazi Jewish descent and cancer link on her father's side. Nine months later, the cancer recurred in her lymph nodes. She sought a second opinion at M.D. Anderson Cancer Center in Houston. Genetic testing showed she had a BRCA2 mutation. She had her other breast removed, along with her ovaries.
''I felt like I was denied access to genetic information and my doctor should have tagged me for the genetic risk,'' said Friedman, who gave up her career as a vet in Coral Springs to found FORCE, Facing Our Risk for Cancer Empowered, a nonprofit focused on hereditary cancer issues. ``It's critical to look at both sides of the family. A lot of the healthcare providers miss that, shockingly enough.''
A man can be a BRCA carrier and not get cancer himself, but pass the mutant gene to his daughters, who face a greater cancer risk because women have more breast tissue than men. In Friedman's case, her father's mother had an abdominal cancer, probably ovarian, but her father was cancer-free. ''So it looks like it skips a generation,'' she said.
The psychological and family dynamics of genetic testing are complicated. As a mother who might have passed on the faulty gene to her son, now 13, Friedman understands the potential issues -- denial and guilt among them. She said her son will decide whether to be tested when he is of age.
''I will encourage him to speak with a Board-certified genetic counselor,'' Friedman said. ``It's going to be up to him.''
It's going to be up to Debbie Brooks' son, as well. Debbie endured a lumpectomy, radiation and chemotherapy for her stage 1 tumor, maintaining her pace as the president of her family's longtime business, Brooks Patio Furniture.
Toward the end of her chemo, Debbie realized her mother had been lax about her own annual screening. ''Her bald daughter told her to go get a mammogram,'' Debbie said.
Rhoda's cancer diagnosis -- also a small tumor in the right breast -- was followed by a lumpectomy and radiation. Debbie's experience made Rhoda's diagnosis and treatment a little gentler, less scary.
''It was like, OK, been there, done that; we'll get through this,'' Debbie said.
On Mother's Day, Debbie, now 49, and Rhoda, 75, will attend the Y-Me Breast Cancer Organization's Walk to Empower in Coconut Grove, celebrating their survival.
Debbie, who has since married her boyfriend, Toby Cline, is considering preventive surgery to remove her ovaries. Various cancers have appeared in men on Debbie's paternal side and the family descended from Ashkenazi Jews. Debbie's oncologist urged her to take the genetic test.
''I still have the order sitting on my bulletin board,'' Debbie said. ``They say I should do it. At this point in my life, I'm not ready.''
Rhoda, who doesn't have an explicit history of cancer in her family, is even more clear: ``I don't want to know.''
The Brooks family and Friedman hope that medical and genetic advances will spare their children and grandchildren the anguish of cancer.
''We need more options and we need better options,'' Friedman said. ``This is now what we want for the next generation.''
