Libby Znaimer was the keynote speaker of the inaugural BRCAinBC event One in 40: From Awareness to Empowerment. (photo from zoomerradio.ca)
An estimated 200 people gathered at Congregation Beth Israel last month for One in 40: From Awareness to Empowerment, the inaugural event of a project to increase knowledge of the cancer risks connected to the BRCA1 and BRCA2 gene mutations.
The Jan. 8 event title is based on the fact that, for people with Ashkenazi Jewish heritage, there is a one-in-40 risk of carrying the BRCA genes, which increase the risk of genetically linked cancers. This rate is 10 times that of the general population. Elizabeth Wurzel, author of the bestselling memoir Prozac Nation, who passed away in January from breast cancer and was found to carry the gene mutation, called BRCA “the curse of the Ashkenazi Jews.”
One in 40 was organized by BRCAinBC, a provincial group spearheaded by members of the family – wife Jane and daughter Catriona – of Geoff Remocker, who died of aggressive prostate cancer. BRCAinBC’s objectives are to increase awareness among community members and health professionals, educate community members about genetic testing options and reduce the fear and stigma that can surround genetic testing. (See jewishindependent.ca/brcainbcs-inaugural-event.)
Toronto-based broadcaster Libby Znaimer, the keynote speaker, led the audience through her story. In January 2009, after enduring a six-and-a-half hour operation, the only possible cure for pancreatic cancer, she didn’t consider the odds of survival that favourable. Pancreatic cancer is the only form of cancer for which the survival rate is in the single digits, said Znaimer in her talk.
She not only has survived pancreatic cancer, but breast cancer, which was also BRCA-related.
Znaimer has made a film about her experience, Cancer Saved My Life. “It’s more than just a catchy title to get eyeballs on my documentary. It’s true. And I am living proof that, when it comes to the BRCA mutations, there is good news, in addition to the bad news,” she said in her remarks to the audience, which she shared with the Independent.
When Znaimer found out she had breast cancer in 2006, she was not surprised. Because of her family history, she knew that she was at a greater risk. However, she said, she did not think breast cancer would kill her.
“I remember being at a boozy dinner just a few days after being told I had cancer. I was very lucky that a former neighbour of mine was visiting,” she said. “She was working in the States as the head of breast radiology at one of the famous Mayo clinics and, based only on what she knew about my family history, she pointed her finger at me and said, ‘Sweetheart, you have bad genes and, if I were you, I’d bite the bullet and have both my breasts and my ovaries removed … as quickly as possible.’”
Znaimer cited a study in Toronto in which Jewish women were tested for the mutation regardless of family history. Fifty percent of those who tested positive would not have qualified for testing because of their family history. Results from similar studies in the United Kingdom and Israel produced similar outcomes.
“And, having one of those mutations doesn’t just mean you’re at an exponentially higher risk of getting those cancers once,” she warned. “You are also more likely to contract a second cancer, not a recurrence – a completely new other cancer.
“It is especially gratifying for me that my case has helped others and to be here to talk about the importance of getting tested,” she said. “It is the dawn of a new decade. My second decade as a survivor since Cancer Saved My Life.”
The Jan. 8 educational evening also included panelists Dr. Rona Cheifetz, medical lead of the Hereditary High Risk Clinic, B.C. Cancer Agency; Dr. Intan Shrader, co-medical director, BCCA Hereditary Cancer Program; Len Gross, president of the Prostate Cancer Foundation of British Columbia; and Tovah Carr, a BRCA carrier.
BRCAinBC arose from the realization that many in the Jewish community are not aware of the risks of carrying the BRCA genes. They hope to support improvements in access to genetic testing throughout the province for members of the Jewish community, and to protect BRCA carriers from the potentially negative consequences of positive carrier status; in obtaining insurance, for example. For more information, visit BRCAinBC.ca.
Sam Margolis has written for the Globe and Mail, the National Post, UPI and MSNBC.