This is how one Santa Rosa mom described life after testing positive in her early 40s for a rare genetic mutation linked to high rates of breast and ovarian cancers: "It feels like you're living with a gun pointed at your head."
So it was, she said, "a no brainer" to have both breasts preemptively removed - the double mastectomy following mere months after the complete prophylactic removal of her reproductive organs.
Like Oscar-winning actress Angelina Jolie, who revealed this week that she has had a preventive mastectomy and breast reconstruction, the 46-year-old mother of two has seen up close "the wreckage of cancer" through her mother's repeated battles with the disease.
A preventive mastectomy "is drastic," said the woman, who asked that her name not be published, but "I don't regret it at all."
In an op-ed piece published in Tuesday's New York Times, Jolie, 37, made public her decision to undergo a preventive bilateral mastectomy after learning she had the BRCA1 genetic mutation putting her at very high risk for developing breast and ovarian cancer, as well as other cancers, sometime in her lifetime.
Her decision to go public drew rave reviews locally, both from local health practitioners and those who have confronted cancer.
Not only does it turn the spotlight on mastectomy as a preventive option for those who have inherited faulty BRCA1 and BRCA2 genes, but it may prompt other women to learn more about their own risks and seek genetic counseling, local practitioners said.
"I just think she's amazingly courageous to do this, and I think it's going to be very helpful to someone who perhaps can't imagine that they would ever do this but know that they should," said Santa Rosa primary care doctor Amy Shaw, whose patients are cancer survivors or in treatment.
She and others emphasized, however, that genetically inherited breast cancers accounts for only a small portion of the incidence of the disease - about 5 to 10 percent, according to nurse practitioner Kathleen Mott, a risk assessment counselor with the Redwood Regional Medical Group in Santa Rosa.
Of those, about 55 percent are linked to mutations of the BRCA1 or BRCA2 genes, whose function is to suppress tumors - unless they aren't working.
Jolie, whose own mother died at age 56 after fighting ovarian cancer for nearly a decade, said she chose her course of action in part to ensure her children wouldn't lose her to the disease.
More and more women are choosing the same path when informed of their genetic predisposition to these cancers, health providers say.
While accelerated screening for breast cancer is an option - through mammography, ultrasound and MRIs - and medications may reduce breast cancer risk, removal of the breast tissue can reduce the risk of disease from 90 percent to about 5 percent through a single surgery.
"It's a heart-breaking decision," Shaw said, though improved reconstruction techniques make it increasingly more palatable.
But especially for women who share Jolie's considerations - having a mother suffer or die from the disease and having young children you want to watch grow - it's a reasonable option, she and others said.
Nearly all women who possess faulty BRCA1 and BRCA2 genes have their ovaries removed at least after child-bearing age, in part because there are no good screening tools for ovarian cancer, local practitioners said.
In Shaw's practice at Redwood Regional Medical Group, a majority choose preventive mastectomy as well, she said.
But others reported mixed results, both because it means removing otherwise healthy tissue and because breasts are so closely linked to femininity and sexuality.
"It's kind of a hard step for many women to make," said Brad Drexler, who has an obstetrics and gynecology practice in Healdsburg. "It's a very personal decision.
"You do not get people walking in an saying they want both breasts removed. That is not common," Mott said.
There are cost constraints for some people, even some of those who are insured. Others just reject the notion outright. And many others who may have a genetic mutation don't get tested until they have a cancer diagnosis - even with family histories full of red flags.
But there are cases where patients who opt instead for accelerated screenings, which usually means occasional biopsies because of their risk profile, grow tired of the grind of it and, particularly, the anxiety they experience with new screening every six months, Mott and others said.
"It's every time waiting for results and hoping that you're not expressing disease," said nurse practitioner Paula Kelleher, who runs the high risk breast cancer clinic at Kaiser Permanente in Santa Rosa. "So it's quite anxiety provoking."
Shaw noted that, even with Jolie's financial resources, she viewed her best medical option as a mastectomy. "It's horrifying that we're doing this - we're cutting off healthy tissue - but that's the best we can do in 2013."
But she and others in the medical community said they hope Jolie's example will drive others to investigate their own risk and, if appropriate, get genetic testing.
If it's negative, it can only bring relief.
And if it's positive, it may be what the Santa Rosa mother called "a gift in an ugly package that gave me choices.
"I am profoundly grateful that I discovered this information," she said. "When it comes to illness, we have so little control. And I wasn't ill. I was never sick. But it gave me control where I otherwise wouldn't have had it."
You can reach Staff Writer Mary Callahan at 521-5249 or mary.callahan@pressdemocrat.com.
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