When Lisa Schlager took part in a research study in 1999, she never expected to get some news that would change her life forever.
In the course of the study, Schlager tested positive for a BRCA gene mutation, an abnormality known to increase greatly the risk of developing breast and ovarian cancer. A women with a BRCA mutation is about five times more likely to develop breast cancer and 10 to 30 times more likely to develop ovarian cancer than women who don't have a mutation, according to the National Cancer Institute.
She didn't know much about the breast cancer gene at the time. But when she discussed the results with her doctor, she learned how serious it was.
"I told her I was BRCA-positive and she said, 'So when are we scheduling the surgery [mastectomy]?'" said Schlager, who lives outside Washington, D.C.
"I was like, 'I don't have cancer. I'm not going to have surgery.'"
Schlager, now 43, refused for several years to have a mastectomy and went on with her life. She had two children and started her career in marketing communications.
But after some abnormalities were found during routine breast-cancer screening, she started to worry not about if she would get cancer, but when she would get it.
She finally decided in 2007 to go along with the medical recommendation that women who have the BRCA mutation and are older than 35 who are done bearing children have their ovaries removed.
She said her desire to start hormone replacement therapy to help alleviate menopausal symptoms played a part in her decision, as her doctors wouldn't agree to it before the breast-removing surgery because of the risk associated with the BRCA mutation.
"I asked about having my breasts removed, and they said it's OK to do HRT [hormone replacement therapy] after they're removed," she said.
After that, Schlager decided to have her ovaries removed in 2007, followed by both of her breasts in 2008.
Schlager's decision, albeit a difficult one, could well have lengthened her life, according to the results of a study published in the latest issue of the Journal of the American Medical Association.
Researchers found that having a preventive mastectomy may reduce the risk of breast cancer in women with BRCA 1 and BRCA 2 mutations. They also discovered that preventively removing both the Fallopian tubes and ovaries -- a procedure called a salpingo-oophorectomy -- was associated with a lower risk of ovarian cancer, a lower risk of breast cancer in women who were never diagnosed with it before as well as associated with a lower rate of early death from any cause, mortality from breast cancer and mortality from ovarian cancer.
In women with a previous breast cancer diagnoses, however, salpingo-oophorectomy was not associated with a decreased risk of developing ovarian cancer.
While doctors have known for some time that preemptive surgery in women at high risk of these cancers reduces their risk of the diseases, the recent study revealed the potential life-extending nature of salpingo-oophorectomies.
"It is important to reaffirm other existing data showing the benefits of prophylactic surgery in this high-risk population," said Dr. Kathy J. Helzlsouer, director of the Prevention and Research Center at Mercy Medical Center in Baltimore.
Dr. Anne Wallace, professor of clinical surgery at Moores UCSD Cancer Center in San Diego, said, "Prophylactically removing the ovaries in these women is extremely important as ovarian cancer screening is not very helpful."
Doctors said the new findings are unlikely to change screening or treatment recommendations, which suggest that women with BRCA mutations get annual mammograms and MRI's, with the timing of each test staggered to schedule a test every six months.
"We already routinely discuss prophylactic surgery with BRCA-mutated patients, and we already routinely discuss and encourage genetic testing in women who are at high risk based on family history," said Dr. George Sledge Jr., professor at Indiana University's Simon Cancer Center.
Dr. Henry Mark Kuerer of the University of Texas MD Anderson Cancer Center said, "It has been well-known for some time that prophylactic mastectomy or oophorectomy reduced breast cancer risk in patients with BRCA mutations. I am doubtful that this will lead to more testing for BRCA genes."
But the results may encourage more women to get tested for the BRCA mutations. In an editorial accompanying the research, Dr. Laura Esserman of the University of California, San Francisco, and Dr. Virginia Kaklamani of Northwestern University wrote that the study highlights the importance of genetic counseling, which can help women understand and sort out all the ramifications of these risk-reducing surgeries.
"Due to the complex and sensitive nature of hereditary risk assessments, clinicians need to educate their patients about the risks and benefits of testing and be able to refer their patients to clinicians who can discuss surveillance and surgical prophylaxis," they wrote.
It's not always an easy discussion between a patient and her doctor. When Schlager first heard her doctor recommend an oophorectomy, she dreaded the thought of going through early menopause.
"Women naturally go through menopause very gradually, and going through surgical menopause is like going off a cliff," she said. "I read about a lot of really bad experiences."
Dr. Fremonta Meyer, a psychiatrist at Dana-Farber Cancer Institute in Boston, said that women considering an oophorectomy are often anxious about the onset of menopausal symptoms.
"Some of the psychosocial research out there suggests that women would like and need a lot more information about hormone replacement therapy, such as what it is, the side effects and whether it affects the risk of developing breast cancer," Meyer said.
The prospect of having a mastectomy often brings up issues of body image, Meyer said.
"Reconstruction is ever-improving but there's still a risk you're not going to be satisfied with reconstruction," she said
Despite their initial anxiety, Meyer and other experts say that better knowledge about the effectiveness of mastectomies and oophorectomies gives women hope and empowerment.
"There's a psychological benefit of knowing you're not at risk of leaving your family early and not dying from an aggressive form of cancer," Meyer said.
Kuerer of the Anderson Cancer Center said, "They find this to be somewhat empowering in that, to an extent, they have the ultimate power in potentially altering their future medical health with prophylactic mastectomy.
They cite that they will no longer need mammograms and not have to undergo the stress of additional biopsies and chemotherapy."
Schlager said her emotions ran the gamut from anxiety to empowerment.
"I saw a therapist before I made the decision, after I made the decision and while I was going through the surgeries. I kept wondering if I was making the right choice."
Now, however, she said she believes she did, and volunteers with FORCE, a non-profit organization dedicated to helping women with hereditary breast and ovarian cancer.
"This study and all the information out there make me feel validated that I wasn't crazy or I wasn't taking extreme measures," she said. "I feel like I was given a gift because I had the knowledge I needed to make a choice for myself."