Jolie’s mastectomy jump-starts cancer conversationsWritten by Sarah Ottney | Editor in Chief | firstname.lastname@example.org
When 31-year-old Marcie Delia tested positive for a gene mutation that predisposed her to develop breast cancer, she immediately embarked on a regimen of regular screenings, but soon decided that wasn’t enough. In November, she underwent surgery to remove both breasts as a preventative measure.
“After about a year, I had enough,” the Columbus resident told Toledo Free Press via Facebook. “I’m a risk-averse person and my 50-80 percent odds of getting breast cancer were by no means reasonable or favorable. [I thought] ‘If I get cancer, I’ll have to have surgery anyway, so why not do it on my terms, minus the life-altering fear of a cancer diagnosis and months if not years of debilitating treatments and continual monitoring?’ It was not something I wanted to do, but felt I had to go forward with the surgery for my relative peace of mind. Anything else felt like waiting around to get cancer.”
Delia’s immediate family — especially her father, who was fighting terminal prostate cancer — was supportive of her decision, but many people didn’t understand.
“Any friend who had ever lost a loved one to cancer was immediately supportive and encouraging of my decision. Anyone who had not generally responded with, ‘That’s really drastic.’ Some people said, ‘Why not watch and wait?’” Delia said. “That was frustrating. They don’t realize that while that is an option, it’s a risky one. Mammography can only do so much. There’s no guarantee a cancer can be caught early. Others may be comfortable with that approach, but for me, that was too big of a gamble to live with.”
On May 14, the topic was thrust to the forefront of international conversation when The New York Times published an op-ed column by actress Angelina Jolie in which she shared her recent decision to undergo a preventative double mastectomy after testing positive for the gene mutation BRCA1.
“Knowing that many other women have been through this helped for sure,” Delia said. “[But] what I appreciate is that she is sharing this information and bringing more awareness and discussion to the issue.”
Local reactions mixed
Jolie’s announcement has also reverberated — with mixed reactions — among local medical professionals.
Kelly Morse of ProMedica’s Hickman Cancer Center at Flower Hospital, Northwest Ohio’s only board-certified genetic counselor specializing in cancer, said she thinks Jolie will be a positive role model for local women.
“Some women are very attached to their natural breasts and see that as an important part of themselves as a woman and it’s very difficult emotionally to wrap their heads around losing them,” Morse said. “Other women are of the mindset that they will do anything to remove the risk and basically say, ‘How soon can we get this done?’ Every woman is just very, very different.
“[Jolie’s announcement] should at least allow women to start asking questions and if maybe they didn’t think surgery was right for them a few years ago, maybe they will revisit that and decide it’s the right thing for them now. Or if they were never tested but know it’s in their family, maybe they’ll think it’s the right time to come back in for testing.
“Just being in her position, as an actress, where physical appearance is obviously very important, that she was able to go ahead with that surgery, I think it’s really empowering,” Morse said.
However, that same awareness could be “a double-edged sword,” said Dr. Nasfat Shehadeh, medical director of Mercy Cancer Centers at St. Anne and St. Charles.
Preventative mastectomies have become more common during the past seven years as more people become aware of the option and as reconstructive methods improve, but it isn’t the best choice for all women, Shehadeh said.
“It’s an extreme measure,” he said. “It might even be an extreme measure in patients with a mutation. I think what [Jolie] has done is very reasonable; it will decrease the risk of breast cancer without question. But a study done in Europe showed it didn’t have an impact on overall survival. It can also have a significant psychological effect on the patient and the spouse.
“We have to make sure the patient is really well-informed and understands the consequences. We have to understand that the vast majority of patients will do fine with just a lumpectomy if cancer is detected early. We are overdoing mastectomies and I hope we won’t see a second rise of mastectomies because of this story.”
One in eight women
One in every eight women, or 12 percent, will be diagnosed with breast cancer, but those with the BRCA1 or BRCA2 mutation are five times more likely to develop the disaese, said Shehadeh, adding that only about 5 to 7 percent of breast cancer cases are genetic.
The genetic test is called BRACAnalysis and is done by only one company, Myriad Genetics Inc. in Salt Lake City.
Not everyone is a candidate for BRACAnalysis and not every cancer patient is tested, Shehadeh said.
Younger patients and those with multiple diagnoses in their families are likely to qualify for insurance coverage, but there are many criteria, said Morse, who said she consults with about 10 people per week, typically with a doctor referral.
The initial test costs $4,040, Morse said.
Once a genetic mutation is identified, the test for family members can be set to hone in on that particular gene, making it less expensive, about $475, Morse said.
Delia underwent genetic testing after her father was diagnosed with stage IV prostate cancer in 2010. Both were found to be positive for the BRCA2 gene mutation.
Her father’s sister, also BRCA2 positive, had breast cancer, and three of her father’s aunts died of breast cancer, one at age 30, Delia said.
“When people hear about my surgery, even medical professionals, they always ask ‘Did your mom have cancer?’ No. ‘Your grandma?’ No,” Delia said. “Cancer on the father’s side of the family matters just as much as cancer on the mother’s side.”
Road to recovery
Although she trusts she made the right decision, Delia said the physical recovery process as well as the emotional and psychological process of adjusting to her new body will take time.
“All along, I fantasized about the relief I would have once my surgery was over. I thought my anxiety would lessen and this huge weight over me would finally disappear,” Delia said. “[Instead] I felt a lot of discomfort and sadness. I know I did the right thing, but to expect relief in the short term was short-sighted.”
She does count the timing of her surgery as a blessing as it allowed her to spend time with her father, who died in April, shortly after her second surgery.
“I spent the last two weeks of his life with him almost nonstop,” Delia said. “Had I postponed the surgery, I would have been at work. I believe I was meant to have the surgery when I did.”
Everyone copes with a cancer diagnosis or a positive BRCA test result differently, Morse said. National support organizations like Bright Pink and FORCE (Facing Our Risk of Cancer Empowered) help many people, she said.
“We can’t change or correct our genetics right now,” Morse said. “We have to cope and deal with whatever hand we’re dealt.
“That’s why I personally feel it’s important for these families to see the expertise of a genetic counselor, not just for medical but for emotional support.
“It’s a pretty personal choice.”
Tags: Angelina Jolie, BRACAnalysis, BRCA1, breast cancer, Flower Hospital, Hickman Cancer Center, Kelly Morse, Marcie Delia, Mercy Cancer Centers at St. Anne and St. Charles, Nasfat Shehadeh, ProMedica, The New York Times