TAMPA — Just last week, Terri Comeau completed the grueling surgeries she has needed since making up her mind to have her healthy breasts removed to prevent cancer.
"It's a tough decision to remove your breasts, the toughest decision I've ever made. But it also was the most logical thing to do," said the 29-year-old Lutz wife, mother and sales analyst.
That kind of deeply personal decision on Tuesday became a topic of national conversation when Angelina Jolie revealed that she, too, underwent a preventive double mastectomy and reconstruction. Like Comeau, the Oscar-winning actress has a genetic mutation that sharply increases a woman's risk of breast and ovarian cancer.
The celebrity announcement highlighted how a simple blood test can turn into a call to action for women with a genetic predisposition to cancer.
Jolie's willingness to detail her experience in a first-person opinion piece for the New York Times drew praise from Comeau and others in the Tampa Bay region familiar with the complex medical and emotional issues involved. Yet it also underscored the need for patients to get help understanding implications of the increasingly popular genetic test.
The test looks for mutations of the BRCA genes, which for both Comeau and Jolie indicated an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer. Now, their risk of breast cancer is under 5 percent.
"Once I knew that this was my reality, I decided to be proactive and to minimize the risk as much I could," Jolie wrote, noting that risks can vary, and that the genetic defect accounts for only a fraction of breast cancers.
Jolie's mother died from ovarian cancer at age 56. Jolie wrote about trying to minimize fears among the six children she is raising with actor Brad Pitt about the illness that took away "Mommy's mommy.''
"On a personal note, I do not feel any less of a woman," wrote Jolie, considered one of Hollywood's most beautiful actresses. "I feel empowered that I made a strong choice that in no way diminishes my femininity."
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But prophylactic mastectomy is not the choice of most women with a BRCA mutation.
Some studies suggest that perhaps 30 percent of BRCA-positive women opt to remove breasts, ovaries or both. Experts say the rate may be rising as surgical options have improved, producing better aesthetic results with fewer complications.
"It's trending upward, becoming more common," said Dr. Tuya Pal, a clinical geneticist at Moffitt Cancer Center in Tampa. "Many have lived through multiple family members who have lived with and died with cancer, and they don't want to go through that.''
Comeau was tested last year, knowing she could face hard choices. Her mother, diagnosed with breast cancer at 22, is still alive, but an aunt died of it at 38.
Watching her own mother lose her longtime struggle with breast cancer persuaded Christine DeLessio Miller, 37, to get tested for the BRCA mutation, as her doctor had recommended for years.
The Trinity woman had been worried about the cost, more than $2,000 out of pocket. But she decided that she wanted to spare her husband and two young children the pain of losing her.
"Knowledge is power," she said. "Whether good, bad or ugly, what it was, was going to come out."
She planned to wait for her husband to open the envelope with the results, but couldn't stop herself from tearing in.
"Zero mutations," it read.
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Jolie's New York Times column comes as a major study on genetic testing and breast cancer is being launched in the Tampa Bay area.
The University of South Florida, insurer Aetna and the advocacy group Facing Our Risk of Cancer Empowered (FORCE) are leading the examination into how genetic testing affects treatment decisions by breast cancer patients and their doctors.
"We're doing what we can to use this for awareness,'' said Sue Friedman, executive director of FORCE, of the Jolie news. Just last month, former American Idol judge Kara Dioguardi, said she had her ovaries and fallopian tubes removed due to a BRCA test. Before her, Christina Applegate and Sharon Osbourne announced their BRCA status and preventive mastectomies.
"It's really quite a phenomenon when you see how many celebrities'' have a mutation believed to affect in 1 in 500 people generally, said Friedman, who is a BRCA-positive cancer survivor.
Dr. Rebecca Sutphen, the USF genetics professor leading the new study, said Jolie's emphasis on family could set her apart from other celebrity revelations.
"This may in fact touch the hearts of many women who may be motivated to do things for their children they wouldn't do for themselves," said Sutphen, a cancer survivor with a 7-year old daughter.
In the new study, funded by the National Institutes of Health, researchers will follow 5,000 Aetna members nationally with breast cancer who undergo genetic testing. They are looking for ways to improve on current practices, as research shows many doctors lack training in helping patients understand the decisions involved in getting tested and interpreting the results, said Dr. Joanne Armstrong, an obstetrician who is the head of women's health at Aetna.
"Although a lot of attention is being paid to who's getting tested, not a lot is known about what women are doing with the information they get,'' Friedman said. Her group also has found that many women who test positive but forgo surgery aren't told about high risk surveillance through MRIs, which are more sensitive than mammography.
Access is another major issue, especially for women who lack insurance. Under the Affordable Care Act, genetic testing and counseling must be covered for women at risk, and already are by most major insurers. If a policy covers prophylactic surgery — and many do — it also must cover reconstruction.
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Not everyone comes out of their surgeries with Jolie's minimal scarring and rapid recovery.
Jeanine Oliver learned she had a BRCA mutation after being diagnosed with advanced ovarian cancer. Three sisters have had breast cancer, and she lost a fourth sister to ovarian cancer.
She struggled with the decision to have a preventive bilateral mastectomy following the removal of her ovaries.
"Your sense of who you are, your sensuality with breasts being removed, is a challenge."
The 54-year-old Palm Harbor mother of three developed a life-threatening infection that sent her back to the hospital. She is uncomfortable with her scars.
Yet she doesn't regret her choice. "What's more important, how you look or reducing your risk of cancer?" Oliver said.
Comeau, still fatigued from her procedures, says she too is comfortable with her decision. She is a volunteer coordinator for FORCE Tampa Bay and wants women in her situation to know that they are not alone.
"What I would tell women is that it's not an easy decision, but having support is what got me through it.''
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