Upon learning she had a mutated gene making her prone to breast cancer, a screenwriter opted for a mastectomy over the 87 percent chance of getting the dreaded disease.
By Nora Fleming / Special to The Malibu Times
After watching her mother suffer through breast cancer and then fatal ovarian cancer, Jessica Queller, a Los Angeles-based screenwriter, decided to learn her own likelihood of the same fate.
Queller chose to be tested for BRCA (acronym for breast cancer) gene mutations that could put women at a higher risk of developing breast and/or ovarian cancer. Patients with mutations have up to an 87 percent risk of developing breast cancer and up to a 60 percent risk for developing ovarian cancer.
Queller tested positive for the mutation and made the choice to have a bilateral mastectomy as a preemptive measure, a choice 30 percent of women who have the gene mutation make, said Dr. Richard Frieder, an obstetrics and gynecology physician with offices in Malibu and Santa Monica.
Frieder has teamed with Queller, who wrote the book “Pretty is What Changes,” chronicling her experiences, for a multipart awareness series in Malibu and Santa Monica. Frieder has already held two discussions and screening sessions of “In the Family,” a documentary about director/producer Joanna Rudnick’s positive BRCA gene mutation test and her search for more information, which will premiere on PBS’ independent nonfiction film series POV on Oct. 1. Frieder is also hosting another screening and discussion in Malibu on Tuesday and a lecture/question-and-answer session with Queller at the Malibu Jewish Community Center and Synagogue on Oct. 19.
Seventy to 75 percent of women will die from ovarian cancer and 25 percent from breast cancer each year, Frieder said.
However, patients who carry the mutation are able to make choices such as more careful surveillance and exams, a change in lifestyle habits or a decision to have a prophylactic bilateral mastectomy and/or a hysterectomy.
“What pushed me over the edge in my own decision was learning that if I watched closely and waited for cancer to strike, even if we caught it at its earliest stages, I would then be advised to have a double mastectomy,” Queller said. “If I needed surgery anyway, I decided I would prefer to have it while I was healthy and my life was not in danger.”
Frieder is hosting two discussions at area synagogues due to the high prevalence of BRCA mutation in people with Ashkenazi (Eastern European) Jewish ancestry.
“It’s not a Jewish disease, but it is much more predominant in the Jewish community,” Frieder said.
Typically, one in 400 women are carriers for the gene mutation and one in 40 are carriers if they are of Ashkenazi ancestry.
The BRCA mutation test was first made public in the late ’90s, but did not become commonplace until the last few years. The rates of tests administered have gone up from about 3,500 five years ago, to several hundred thousand administered last year, Frieder said.
Now, more and more doctors are administering the tests in their offices and not all of them are OB/GYNs. Dr. David Baron, a Malibu-based family physician just started administering the test this past summer.
Baron said, while he had been aware of the test for a while, pressure to administer it has increased due to “affordability, reliability and availability.”
One patient, Baron said, hoped the information from the test could benefit the choices of other family members in the kind of scrutiny they apply to their health. Others wanted to know if they needed to be more cautious in how frequently they were screened, he said. And some do opt for elective surgeries so they will not have a fear of developing the cancers.
In the past, people who had multiple family members with these cancers had been targeted for the test. Today, family history is not a sure indicator of a hereditary presence of the gene, as roughly 50 percent of people diagnosed as BRCA mutation positive, have no family history of the two cancers, Frieder said.
This is due to smaller families where the gene may not show up, and the fact that men can also be mutation carriers but only have a 7 percent risk of getting breast cancer, though they are prone to other cancers.
While the test costs from several hundred dollars up to $3,000, it is covered by insurance companies 90 percent of the time for 90 percent of the cost, Frieder said.
The greatest reason patients don’t get the test is fear of insurance discrimination, Baron said. Federal and state laws prevent insurance discrimination based on genetics due to the Genetic Information Nondiscrimination Act of 2007. There have been no reported cases of discrimination because of the mutation test.
For both Joanna Rudnick and Jessica Queller, the choice for preemptive care was difficult because they are both in their 30s, unmarried and have not had children. The procedures, particularly the hysterectomy, are hard choices to make.
“There are countless people who still find the notion of preventively removing your breasts in a preemptive strike against cancer to be extreme and unthinkable,” Queller said. “I have never once regretted my decision. I feel such relief not to have the threat of breast cancer hanging over my head. The very worst part was the fear in advance of the surgeries. The reality is not bad at all, and far, far better than cancer.”
The screening and discussion of “In the Family” with Dr. Frieder will be take place Sept. 30, 7 p.m.-10 p.m. at 22601 Pacific Coast Highway. RSVP required. A discussion with Dr. Frieder and Jessica Queller will be take place Oct. 19, 10 a.m., at the University Synagogue in Brentwood, and at 5 p.m. at the Malibu Jewish Center and Synagogue. More information can be obtained by calling 310.998.1949.