When news broke Tuesday morning that a healthy Angelina Jolie got a double mastectomy to prevent breast cancer, several people contacted Kelli Cravey.
They know that Cravey wants to have both of her breasts removed too.
“I can’t control cancer, but I can control what I do with my own body,” said Cravey, 35, of Eden, who is the mother of a 3-year-old daughter.
After watching her 44-year-old mother die of breast cancer when Cravey was in her teens, she already has decided to have the radical surgery even though she does not have cancer. At least, not yet.
“It’s crazy to say out loud,” she said. “Even to tell my dad that, it sounds radical to him.”
The swirl of publicity following Jolie’s revelation that she had the radical surgery as a precaution is likely to prompt other women to be tested to determine whether they carry the BRCA gene and consider having the surgery, according to doctors at Roswell Park Cancer Institute.
Jolie explained Tuesday in a New York Times article that she decided to be tested knowing her mother died of ovarian cancer. No doubt, her story will prompt many women to consider their family history, said Dr. Helen Cappuccino, a cancer surgeon at the hospital.
The genetic testing can be expensive, costing from several hundred dollars to as much as $4,000, although under the Affordable Care Act, new insurance plans are required to cover the tests.
The surgery is extensive and while it dramatically reduces the risk of cancer, it is no guarantee.
“These are not decisions you should make on your own. You need to talk to a genetic counselor,” said Cappuccino, an assistant professor of surgery at the University at Buffalo.
Roswell Park does about 50 to 100 preventive surgeries a year for women at increased risk for cancer because of family history or cancer in one breast, she said.
On average, fewer than 10 of these women had the surgery because of the BRCA gene Jolie has.
Its presence indicates a 60 to 87 percent increased risk of breast cancer, Cappuccino said. Risk drops to 5 percent or less when breasts are removed. That is enough to make the procedure irresistible to some.
In the last two years since Dr. Nicoleta Voian has directed genetic counseling and testing at Roswell Park, interest in testing has gone up slightly. About 10 new patients come in each week.
“The awareness about hereditary cancer syndrome is increasing,” she said.
The American Cancer Society estimates that this year, about 300,000 new cases of breast cancer will be diagnosed in women. About 5 to 10 percent of all cases of the disease are thought to be hereditary, and the most common cause is the inherited mutation in the BRCA 1 and 2 genes, according to the society.
While the cancer society reports that new health insurance plans under the Affordable Care Act are required to cover the costs of counseling and testing for breast cancer risk as the law takes effect, Dana Saylor is feeling impatient.
Saylor, a self-employed artist and historical researcher whose aunt and grandmother both died of breast cancer, can’t afford genetic testing.
“I do have to accept this reality that I may have this risk factor and there’s not a lot I can do about,” she said. “I try to live as well as I can and be as healthy as I can, and I don’t know if that will affect it, but I can always hope.”
Saylor, 34, posted Jolie’s story Tuesday morning on Facebook in an effort to continue the public conversation.
“It made me happy that someone high profile was talking about it and had the actual mastectomy,” said Saylor. “I’ve thought to myself what if I did get that genetic test what would I do?” she said. “I would almost definitely go through the same procedure.”
For Robin Lally, an assistant professor at the UB School of Nursing, testing and what to do with results is a complicated question. It shouldn’t be rushed.
“There isn’t a particular right answer to whether you have a bilateral mastectomy or not. It’s not the only answer,” said Lally, who has studied what women do with the information. “It shouldn’t be a rapidly made decision, made out of fear. Or because some celebrity does it.”
Rose Ann Ross had the test two years ago, a decade after surviving a bout with breast cancer. She had part of her left breast removed and underwent chemotherapy and radiation treatment.
Her test came back positive for BRCA 2, but she has decided to hold off on surgery for now.
“It’s a hard decision to make,” said the 61-year-old Town of Tonawanda woman. Ross feels that having the radical surgery won’t guarantee she’ll never get cancer. She gets regular checkups with doctors who screen her for a variety of cancers, and if they do spot anything of concern, she said, “I certainly would do it.”
Cravey, an events planner for the American Cancer Society, has not had the genetic test but has made up her mind to have her breasts surgically removed. She feels having the genetic test will help justify – to the health insurance company and her father – what she feels certain she has to do.
She has been thinking of her daughter, Coral. Cravey wants to be around for things her own mother missed. For her, living without breasts is not a sacrifice.
“The sacrifice to me is not to be there when my daughter graduates from high school,” she said. “I’m completely confident in the person that I am, with or without a chest. To me, knowledge is power.”
Now she just wants to find a good doctor. She wants someone who will know how to cut away every last bit of tissue. “You’ve got to do your due diligence to make sure you get every single piece,” she said.
A life-and-death decision
Angelina Jolie’s double mastectomy puts the spotlight on a tough medical choice
Preventive double mastectomy, in which the skin covering the breasts is preserved and fillers are inserted to keep the skin elastic for reconstruction.
Why have the operation?
Jolie inherited a faulty version of the BRCA 1 gene. Doctors told her she had an 87 percent chance of getting breast cancer. She said the surgery reduced her risk to below 5 percent.
What is the risk factor?
Only a small percentage of women inherit BRCA, but women who have are about five times more likely than the average woman to get breast cancer.
SCREENING for BRCA
A genetic blood test can detect BRCA. The test can cost several thousand dollars, but 95% of patients have insurance that covers it. The average out-of-pocket cost is $100.