The odds were not in Erin Rettig’s favor that she would escape breast cancer, so she had a double mastectomy in November 2012 even though no cancer was present.
Like actress Angelina Jolie Pitt, Rettig carries a gene mutation that dramatically increases her risk for breast and ovarian cancers. The Henrico County mother also has a close relative, her mother, who has had breast cancer.
Rettig, a 34-year-old mother of a 3-year-old and a 6-year-old, is not finished — she plans to have her ovaries removed before she turns 40.
“When you have a percentage hanging over your head of what will probably happen, that changes your outlook on things,” she said.
“If you had an 80 percent chance of crashing on a plane, you would not get on that plane,” she said, using the metaphor to describe how she felt about the risk she faces.
Rettig is co-leader of a local chapter of Facing Our Risk of Cancer Empowered, or FORCE, a support network for people with hereditary breast and ovarian cancer. The cancers are caused primarily by mutations in the breast cancer 1 (BRCA1) and breast cancer 2 (BRCA2) genes.
Jolie Pitt revealed Tuesday in a New York Times opinion piece that she had her ovaries and fallopian tubes removed. Two years ago she had her breasts removed.
“We’ve got an amazing spokesperson in Angelina Jolie,” said Dr. Cecelia Boardman, a gynecologic oncologist at Virginia Gynecologic Oncology, an HCA Virginia practice.
“She did a lot to educate women about family history and risk and genetic testing,” Boardman said.
Current recommendations call for women who have a known genetic predisposition to ovarian cancer to consider having the ovaries removed between the ages of 35 and 40, Boardman said. Jolie Pitt is 39.
“Up until that time there are some medical strategies that women can undertake to reduce their risk of ovarian cancer,” Boardman said. Hormonal contraception such as birth control pills suppress ovulation and reduce risk of ovarian cancer, for example.
“From a screening perspective we can watch women carefully with ultrasound and with certain blood tests on a scheduled basis. That’s what happened with Angelina. She was undergoing routine surveillance ... and ultimately decided it was time to go ahead and get fallopian tubes and ovaries removed,” Boardman said.
It is a life-altering decision, particularly for younger women. With the ovaries gone, a woman enters menopause. Natural menopause typically occurs when a woman is in her 50s, and symptoms such as hot flashes, bone loss, elevated cholesterol and impaired sexual function can wreak havoc on well-being.
“You do want to be able to have people feel healthy and well for as long as they can, but you also want them not to have cancer,” said Dr. Mary Helen Hackney of Virginia Commonwealth University’s Massey Cancer Center, describing the trade-offs of the preventive surgery.
“It’s a perfectly appropriate thing for a high-risk woman who does not have cancer — get your ovaries and fallopian tubes out by age 40,” Hackney said. “Get your breasts off as you choose or intensify your screening with mammography and (magnetic resonance imaging). And talk to a genetic counselor to understand how this all impacts you.”
Overall, risk of inheriting the genetic mutations is small. But the consequences are big. An estimated 55 to 65 percent of women who inherit the faulty BRCA1 gene, like Jolie Pitt did, will develop breast cancer by age 70, and 39 percent will develop ovarian cancer by age 70. For women who inherit the faulty BRCA2 gene, as did Rettig, as many as 45 percent will get breast cancer and 11 to 17 percent will get ovarian cancer by age 70, according to the National Cancer Institute.
Removing the ovaries may reduce the risk of dying of ovarian cancer by as much as 80 percent and of breast cancer by as much as 50 percent.
“There are very few things we do in medicine that reduce risk as much as this,” said Dr. Tyler Ford, also with Virginia Gynecologic Oncology. “That’s enormous.”
Ford said researchers believe ovarian cancer actually starts in the fallopian tubes, which is why the recommendation is to remove them as well.
The risk does not go to zero, however.
“You can develop what’s known as primary peritoneal cancer, a cancer in the lining of the abdomen,” Ford said. “That is a cancer that acts, behaves and is treated the exact same as ovarian cancer.”
Rettig was tested for the gene after her mother was diagnosed with breast cancer in November 2011.
“In the time going through treatment she discovered she was a BRCA2 carrier, so you can guess what the implications are. My sister and I needed to find out if we also carried the gene,” Rettig said. She opted to test right away. Her sister, 29, only more recently underwent testing and was negative for the mutation.
Rettig said she immediately started planning the mastectomy and breast-reconstruction surgeries.
“Because my mom was dealing with breast cancer and had her own mastectomy, I saw how hard chemo was. Going through chemotherapy, she really struggled. I was like, I can’t do that to my kids. I can’t willingly give myself the chance of getting it because that would affect them and that would affect my life, and I want to avoid that experience.”
“It was the toughest couple months of my life, and it was a very difficult and painful process. However, looking back, I have no regrets at all,” Rettig said.