ACTON, Massachusetts — Lauren Corduck was in tears when she read the email from a young woman writing about how she was only 10 when her mother died of breast cancer.
Corduck, who was diagnosed with ovarian cancer last January, could not help but think of her own 9-year-old daughter.
The woman, Jessica Axel, wrote Corduck after hearing about her new organization, Oneinforty. Its principal mission is to inform Ashkenazi Jews about their 1-in-40-chance of carrying a cancer linked mutation of the BRCA1 or BRCA2 gene. That’s at least 10 times the odds faced by the general population.
Axel’s great grandmother and two great aunts had died of cancer. Corduck’s grandmother had died of breast cancer and an aunt twice had cancer.
Today, Corduck’s cancer is in check and Axel has joined the team of Oneinforty volunteers. Both women learned last year that they carried the BRCA mutation.
Axel has undergone preventive surgery to reduce her cancer risk. By the time Corduck learned she had the mutation, it was too late. And it was her experience that spurred her to form Oneinforty.
Because of her family history of cancer, Corduck had undergone annual mammograms since she was in her 20s.
Last December, prodded by a friend, she received genetic counseling. She learned that because she was an Ashkenazi Jew – descended from central and Eastern European immigrants, as are most American Jews – she was at higher risk of cancer.
If Corduck had the mutation, her odds of eventually getting breast cancer would be as high as 85 percent and of ovarian cancer – for which there is no screening available − as high as 55%, according to the Massachusetts General Hospital Cancer Center.
“My jaw just dropped. How did I get to be the age of 45 without knowing this?” she said. “I’m well-educated. I live in the epicenter of world-class medical care.”
Three weeks after being tested, the Acton, Massachusetts, mother of two received the news she had dreaded but expected: She had the mutation.
She scheduled a session for January to discuss her health options. But the day of the meeting, the agenda suddenly changed.
Coincidentally, at the same time she was waiting for her test results, Corduck was battling severe lower back pain, a condition that had flared up periodically since her daughter was born by caesarean section. In the past, chiropractic treatment had always provided relief. Not this time.
After several weeks in agony, she persuaded her doctor to order an MRI. The results showed an incidental finding of multiple mildly enlarged lymph nodes, a possible sign of lymphoma that required an appointment with an oncologist and further testing.
As she was driving to her January appointment, the oncologist called to say that Lauren’s lymphoma tumor marker was high normal, but her ovarian cancer tumor marker was quite elevated and of concern. Corduck went on to the meeting, where instead of discussing how she could ward off cancer, the urgent question was whether she already had ovarian cancer.
Within weeks, after more tests and a biopsy, Corduck discovered that indeed she did. The back pains were a symptom of ovarian cancer that had already spread beyond her abdomen to lymph nodes in her upper body.
Between January and May, she underwent six infusions of chemotherapy. Midway through, she had surgery to remove cancerous tissue and her reproductive system.
As Corduck recovered – her strength sapped by five-hour chemo sessions that left her feeling like she’d been flattened by a Mack truck and her emotions rocked by anxiety over whether she’d see her children grow up – she mapped plans for Oneinforty.
“I developed it in my head. It was incredibly therapeutic,” she said. “I just don’t want this to happen to another family.”
By summer, Corduck already had put up a website and assembled boards of advisors.
“I feel so fortunate to have the experience in nonprofit management,” she said, crediting as well the support of her genetic counselor and physicians.
“We really try to give people hope,” said Jill Stopfer, who counseled Corduck and is now on Oneinforty’s medical advisory board.
“We can push the odds now in their favor … reduce their chances of serious illness, reduce their chances of dying from cancer,” said Stopfer, who is associate director of genetic counseling at the Center for Cancer Genetics and Prevention at the Dana-Farber Cancer Institute.
Oneinforty suggests that men and women who have at least one Ashkenazi Jewish grandparent seriously consider being tested for the BRCA gene mutations by age 25.
While the mutation slightly increases the risk of breast and prostate cancer in men, the most important reason they should be tested is for their children. A parent with the mutation has a 50-50 chance of passing it on. If both parents test negative, their children won’t have to worry about the mutation.
What’s next after a positive test depends on the individual. Women with a BRCA gene mutation are advised to begin a protocol at age 25 of having an annual mammogram followed six months later by a breast MRI, which can detect a tumor the size of the head of a pin.
Even with the mutation, women rarely develop ovarian cancer before the age of 40, according to Stopfer. But older women, she said, may want to consider prophylactic surgery.
Removal of the ovaries and fallopian tubes markedly reduces the risk of cancer in that area of the body, according to Dr. Whitfield Growdon, who is Corduck’s gynecologic oncologist at Massachusetts General’s Center for Gynecological Oncology.
The procedure, which does not require an overnight hospital stay, can be performed with laparoscopic surgery that involves three or four tiny incisions in the abdomen.
The BRCA mutation is present in an estimated 12% of women overall who develop ovarian cancer, said Growdon. Survivors with the mutation have a better than average prognosis, he added. Not only do they live longer, but they are particularly receptive to drugs for impeding recurrence that have been approved in just the last three years.
Unlike traditional chemotherapy, which is administered intravenously and affects the entire body, the new medication comes in pill form and targets just the cells that have the BRCA mutation.
“It’s like the tumor has an Achilles heel that other cells in the woman’s body don’t have,” Growdon said.
Corduck is currently undergoing chemotherapy again after testing revealed ovarian cancer in three lymph nodes in December.
“Fortunately, it was caught very early,” she said. If the chemo doesn’t eliminate the malignancy, the nodes will be removed by laparoscopic surgery. Once she is in remission, Corduck expects to be placed on one of the new pills, known as PARP inhibitors.
Meanwhile, Corduck is beginning to see the results of her awareness campaign. She just heard of a woman who after learning about Oneinforty underwent genetic testing, discovered she had the mutation and is now taking steps to reduce her odds of getting cancer.
Camila Gabriel, a genetic counselor and research fellow at Dana Faber Cancer Institute, said people typically gauge their risk of cancer based on their own family history. That can be misleading, she said, especially in the case of small families or those where the gene mutation is passed down through the males.
In her prior position in London, she helped conduct a study that found that asking people about their ethnic ancestry rather than just their family history increased the odds of discovering whether they carried the BRCA mutation by 50-60%.
Ashkenazi Jews are believed to be more susceptible to the mutation because their ancestors were confined in Tsarist Russia to the Pale of Settlement, reducing their gene pool.
In Boston, Gabriel is studying ways to enlist primary care physicians in counseling and testing for the BRCA mutation. As it stands now, she said, “GPs get very little genetics” in their training.
Axel was fortunate to have had a physician who prodded her about the mutation.
“My doctor had been telling for me a long time to get testing,” said the Arlington, Massachusetts, resident. “But I didn’t want to deal with it. I was afraid.”
That is until she turned 30 last year. When the test results came back positive, she talked with her family and decided to undergo a double mastectomy. She was able to combine the operation with reconstructive surgery, an option that hinges on each woman’s physical makeup.
“I went to sleep with breasts and woke up with breasts,” she said. “I tried to tell myself, it’s different, not bad.”
Since the odds of developing ovarian cancer are slim at her age, Axel decided to put off preventative surgery until she’s 35 or older.
“I’m not looking forward to it, but I’m even less looking forward to ovarian cancer,” she said.
Now, Axel, director of annual fund and digital engagement at Harvard University’s Hillel, is putting her professional skills to work voluntarily promoting Oneinforty.
Corduck has assembled a team of ambassadors to spread the message at synagogues, schools and community groups. She’s also working with MGH, Dana Farber, Beth Israel Deaconess Medical Center and nonprofits such as Hadassah, the Jewish women’s group; FORCE (Facing Our Risk of Cancer Empowered); and Sharsheret, a Jewish breast cancer organization.
Oneinforty gathered a team of top Boston medical professionals for its first symposium in November. More than 120 people attended.
The website Oneinforty.org includes a video of Corduck recounting her story and resources about genetic testing and counseling, insurance coverage, cancer risks and obtaining emotional support. An alternative to the blood test is a home kit that uses saliva, such as those offered by genetic testing companies like Color Genomics, Counsyl and Pathway Genomics.
Oneinforty has four licensed clinical social workers who are in private practice and available to help families before, during and after testing. Corduck said they stand ready to field questions such as “Should I even get tested? I’m terrified,” how to discuss a positive diagnosis with family members, and what actions to take – an especially wrenching decision for women in their later child-bearing years.
During a two-hour interview, Corduck remained remarkably composed as she discussed her ordeal. But her voice broke when she was asked about the daunting task of reaching out to millions.
“It’s like I can hear the cancer forming in other people’s bodies as we speak,” she said. “We need help raising awareness.”