Henry Lynch, M.D., chair of preventive medicine at the Creighton University School of Medicine, applauded Jolie Pitt’s decision and said she has come to set a standard for women with family histories of breast, ovarian and uterine cancers to educate themselves not only about the potential for those diseases to form, but also the options available to prevent them.
“I’m very familiar with the leadership role that she’s taken and think that she’s done a lot to carry that conversation forward for women,” said Lynch, who has studied hereditary cancers for half a century and discovered how some people are predisposed to multiple forms of cancer, including breast and ovarian cancers, a linkage known as Lynch syndrome. “The decision is ultimately the woman’s, but with good consultation with a genetic counselor and a knowledgeable physician or gynecological specialist, we hope women are getting as much education as they can on these cancers.”
Two years ago, Jolie Pitt underwent a double mastectomy to stave off the hereditary breast and ovarian cancers that had claimed the lives of her mother, grandmother and an aunt.
She elected for the procedure after a genetic test revealed she was carrying a mutation in the BRCA1 gene, an indicator she was 87 percent more likely to develop breast cancer and 50 percent more likely to develop ovarian cancer than a woman without that particular gene mutation. Women with mutations of the BRCA2 gene are also at higher risk for developing breast and ovarian cancers.
Another factor in Jolie Pitt’s decision to have an oophorectomy, she said, is the difficulty in screening for ovarian cancer. Carrie Snyder, MSN, a cancer genetics nurse specialist at Creighton, said the detection element is a major consideration in outlining cancer prevention options.
“The screening is just not adequate,” Snyder said. “I like that (Jolie Pitt) is encouraging women to ask the questions and get more information on the options out there, including meeting with the surgeons who will do the surgery. With difficult screening, perhaps the No. 1 thing a woman can do is get genetic testing to determine what the risks are.”
Lynch said he’s discussed such preventive surgeries as treatment options since the 1970s, especially for certain types of hereditary cancer, but the side effects often kept women from pursuing the treatment. Jolie Pitt’s first surgery triggered a wave of interest from the media, which openly wondered how a film star with still lucrative cachet could continue finding work in Hollywood despite what could be considered an otherwise disfiguring surgery.
“The side effects are there,” Lynch said. “That’s why this has to be an option where education and a full explanation of the surgery and its effects are mandatory. With removal of the breasts, there is an image issue to consider. With the removal of the ovaries, there is the understanding that pregnancy is no longer an option. There are some sexual side effects that should be discussed and there’s also the potential for the onset of osteoporosis.”
Lynch said the age recommendation for surgery, with appropriate medical consultation and consideration of the preventive procedures, is right around 35. Jolie Pitt had her mastectomy surgery at 37 and her ovarian surgery last week at age 39. Her mother died of ovarian cancer at 49.
Jolie Pitt announced her mastectomy surgery, she said, because “I wanted other women at risk to know about the options.” She also promised to keep women in the loop about what she planned on being her second preventive surgery, the removal of her ovaries.
In her Times op-ed, Jolie Pitt relates how that moment came sooner than later when her doctor discovered some irregularities relating to the protein CA-125 in her blood. While her CA-125 levels were normal, she said, her doctor said other indicators were going off and he advised that a CA-125 test can miss early-stage ovarian cancer 50 to 75 percent of the time.
Jolie Pitt, with several weeks’ worth of consultations with doctors and surgeons, decided to go forward with the surgery to remove her ovaries last week. Surgeons did detect a small, benign tumor on one ovary, but otherwise, the tissue was cancer-free.Lynch said the actress, now also an acclaimed director, has shown remarkable courage in outlining her story.
“These are devastating forms of cancer,” he said. “Ovarian cancer, especially, is quite drastic. There is a high death rate and it responds poorly to surgery or chemotherapy. Once it’s been diagnosed, it’s usually already metastatic. What (Jolie Pitt) has done is fully educated herself, given a lot of consideration to her options, weighed them, and made a decision she felt was best for her. It’s a story that women can appreciate.”