BRCA

Catch cancer before it starts

Today’s ancestry services, like 23andMe, have made us more aware than ever of our genes and just how important they are, for both our own health and the health of our children. Celebrities like Angelina Jolie and Matthew Knowles (Beyoncé’s father) have highlighted the importance of two genes specifically – the BRCA genes – and their role in the development of hereditary breast and ovarian cancers. Even so, with the risk of carrying these genes in the general population only estimated between 1/400 and 1/1,000, for most of us, these genes seem like someone else’s problem. But, a few years ago, I learned that people of certain backgrounds, specifically those with Ashkenazi Jewish heritage, are actually at 10 times the risk of the general population (one in 40) for carrying these BRCA genes. I then learned that I was BRCA1 positive. I am an Ashkenazi Jewish woman.

In the 1970s, my paternal grandmother, then a young woman, was treated for breast cancer and made a full recovery. She passed away in 2014. When she died, I requested to be tested for BRCA through the B.C. Cancer Agency’s Hereditary Cancer Program. At the time, I was not prioritized for the test because no one in my immediate family had had a cancer that would directly link me to the gene. I was not seen at the time as being “high enough” risk.

But, in December 2017, I received a phone call that changed everything. It was from my older sister. She had recently volunteered to join something called the Screen Project study at Women’s College Hospital in Toronto, which included testing for the BRCA gene mutations. She had received her results and had tested positive for the BRCA1 gene mutation. I immediately registered for my own test. The test eventually came in the mail, I spit in the cup and sent it back. A month later, I received my own call from the study.

I was told that I was also positive for the BRCA1 gene mutation and that my chances of getting breast cancer and/or ovarian cancer were extremely high – about 70% lifetime risk. I was told that I would need to make some urgent decisions about having more children because regular screenings and preventable surgeries were now available to me. It was recommended that I take action immediately because of my age. The study connected me back to the B.C. Cancer Agency’s Hereditary Cancer Program, which would connect me with my medical care team.

The next year would prove to be a whirlwind for our family. Within a month, I was pregnant with my third child. I planned to have a surgery to remove my ovaries and fallopian tubes (a salpingo-oophorectomy) the following year. While all of this was taking place, my sister had gone for her first mammogram. It initially was clear, but more intensive screening (available in priority to BRCA carriers) revealed cancer. I then had to witness my beautiful older sister battle breast cancer and go through a full double mastectomy. She luckily made a full recovery. We then celebrated the end of her battle with the birth of my own child, followed soon after by my own salpingo-oophorectomy, the day before my sister’s reconstructive surgery.

As devastating as those phone calls were, one thing is clear to me – that my sister is now cancer-free and alive because she learned she was BRCA1 positive. I also know that my own BRCA status has afforded me the ability to make life decisions, have preventive surgeries and avoid cancer now and in the future. Although scary to consider, the knowledge of the BRCA1 gene in our family has been invaluable and saved lives.

I now volunteer for a committee in British Columbia called BRCAinBC, which is working to improve awareness of and access to testing for the BRCA genes in people of Ashkenazi Jewish heritage in the province. It is our message that all people with Jewish heritage should consider getting tested for BRCA genes, as new studies show that only half of all Ashkenazi Jewish carriers have the requisite history of cancer in the family that would indicate risk for carrying a BRCA gene.

We also let people know that the best time to get tested is when they are young and healthy – before cancer strikes! Testing for BRCA in your 20s and 30s provides people with many more options to prevent and manage their risk of cancer. Testing is quick, simple, easy and cheap (or free in many cases).

It is just as important for men to get tested as it is for women – BRCA genes are better known for their role in breast and ovarian cancers, but they also significantly increase the risk of many other cancers that affect men, including aggressive prostate cancers, pancreatic cancers and melanoma.

Learning your BRCA status can, of course, be overwhelming, but it also can provide you and your family with the tools to stop cancer before it starts. That’s what it did for me.

Tovah Carr is a member of the BRCAinBC committee in British Columbia. BRCAinBC is an initiative to increase awareness and understanding of genetic cancer risk in the Jewish community and provide support for those who want to get tested and for people found to carry the BRCA genes. For more information, visit brcainbc.ca. For more information on the Screen Project, go to thescreenproject.ca.

Jewish genes and cancer risk

photo - Amy Byer-Shainman — Amy Byer-Shainman (photo from BRCAinBC)

With the growth of ancestry services like 23andMe, we are more aware than ever of our genes and how important they are. What we may not know is how our Jewish ancestry puts us and our children at greater risk for health issues.

Join BRCAinBC for a virtual event Oct. 1, at 7 p.m., to learn about your Jewish genes and the tenfold increased risk for Jewish people for certain cancers, including breast, ovarian, aggressive prostate cancer, pancreatic cancer and melanoma. Not only will you learn more about your risk, but you will learn where and how you can get tested and what you can do to prevent cancer.

photo - Matt Seaton — Matt Seaton *(photo from BRCAinBC)*

BRCAinBC is a group of individuals concerned about the effect of the BRCA genes on the Jewish community in British Columbia. The project was born out of the realization that many members of the Jewish community are not aware of the risks of carrying the BRCA genes and the risk of genetically linked cancers – BRCA 1 and 2 is the code for variant mutations of two genes known to increase the lifetime risk of several serious cancers in both women and men.

Your Jewish Genes: A Virtual Learning Event will feature speakers from across North America, including Amy Byer-Shainman, aka “the BRCA Responder,” and author of Resurrection Lily: The BRCA Gene, Hereditary Cancer and Lifesaving Whispers from the Grandmother I Never Knew; Matt Seaton, peer navigator with FORCE (Facing Our Risk of Cancer Empowered); as well as members of the B.C. Cancer Agency’s Hereditary Cancer Program and High Risk Clinic, including Dr. Rona Cheifetz, surgical oncologist, and Allison Mindlin, genetic counselor.

photo - Dr. Rona Cheifetz — Dr. Rona Cheifetz *(photo from BRCAinBC)*

For more information about BRCA genes and BRCAinBC, visit brcainbc.ca. To register for the Your Jewish Genes event, go to yourjewishgeneswebinar.eventbrite.ca. Tickets are by $1, $18 or $36 donation towards the BRCAinBC bursary program, which supports access to genetic testing for Jewish people in British Columbia. No one will be turned away for lack of funds.

Increased cancer risks

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.

BRCAinBC’s inaugural event

Jane Remocker and her daughter, Catriona, holding a photo of Geoff Remocker, who passed away in 2016 from pancreatic cancer. (photo from BRCAinBC Committee)

Education is a key goal of the upcoming One in 40: From Awareness to Empowerment event being held at Congregation Beth Israel on Jan. 8.

“BRCA 1 and 2 is the code for variant mutations of two genes known to increase the lifetime risk of several serious cancers, including breast and ovarian cancers and other cancers linked to reproduction in women and prostate cancers in men, as well as pancreatic cancers and melanoma in all genders,” explains the BRCAinBC Committee’s project primer. One in 40 is the probability of carrying the genes among Ashkenazi Jews – compared to a risk of 1/500 to 1/1000 in the general population.

The BRCAinBC Committee, organizer of the One in 40 event, describes itself as “a group of concerned members of the Jewish community in British Columbia, many of whom have been affected personally or in our families by the BRCA 1 or BRCA 2 genes and genetically linked cancers.”

The committee’s work is supported by Beth Israel, which is its home, as well as many other community members, organizations and institutions, including the B.C. Cancer Agency, the Centre for Israel and Jewish Affairs, the Jewish Federation of Greater Vancouver and the Diamond Family Philanthropic Fund.

“There are currently no efforts being made in British Columbia to create awareness or cover general genetic testing for people of Ashkenazi Jewish heritage – in the past, this was due to the prohibitive expense of testing,” notes the primer.

“There have been significant recent gains in the medical community around improving the affordability of testing for genetic mutations,” it continues, “however, awareness of risk is still low amongst members of the Jewish community and, currently, holding a risk profile of being of Ashkenazi Jewish descent is not sufficient to be covered for genetic testing under B.C.’s Medical Services Plan (MSP).”

The impetus for the committee and the One in 40 event was the death of Geoff Remocker of aggressive prostate cancer in 2016. After he died, his wife, Jane Remocker, and the family met with Beth Israel’s Rabbi Jonathan Infeld. She explained to the Jewish Independent in a phone interview that, as members of the congregation, there were donations being made to the synagogue in her husband’s honour, and the rabbi wanted to know where the family wanted to direct the funds. The couple’s youngest daughter, Catriona, who works in the healthcare field, suggested they do something with respect to BRCA genes. Since they weren’t quite sure what they wanted to do on the topic, the donations were held in a discretionary fund until Jane Remocker scheduled a meeting with the rabbi and her daughter two years later, in June 2018.

“By then, she and I had ideas and came up with our three basic goals,” Jane Remocker told the Independent. The three short-term goals of the committee were education and awareness within the Jewish community, and easier access to information about the BRCA genes; advocacy, which involves providing information about and access to screening options, both private and public; and fundraising to cover what has become the One in 40 community-wide education event and the BRCAinBC.ca website, which will be launched in January.

Since Geoff Remocker didn’t meet the criteria for B.C. Cancer Agency’s Hereditary Cancer Program, which offers genetic counseling and testing for “residents who may have inherited an increased risk for specific types of cancer,” he signed up for a B.C. Cancer study of drugs that treat prostate cancer, which included gene testing.

Remocker said he signed up for the study because, “as he said to me, ‘I don’t think the drugs will help me, I think it’s too late. But, if there’s a gene that’s driving this cancer to be aggressive and resistant to treatment needed, that knowledge will help other people.’” It was discovered that he was indeed a BRCA carrier.

Part of the issue, said Remocker about why her husband wasn’t eligible for the Hereditary Cancer Program, was that, while they knew some of her mother-in-law’s medical history, they knew nothing about her father-in-law’s side of the family, who came from Poland and Russia.

“And this is not uncommon,” she said. In addition to this generation not talking about health issues, in general, there wasn’t so much knowledge about health back then.

While a lack of family medical history can be one obstacle in getting genetic testing, she said, another is that many people don’t realize that men can be carriers of the BRCA mutant genes.

“They thought it was only a gene that affected women as breast cancer,” said Remocker. It is important, therefore, and a goal of the committee’s educational program, to make sure that Jewish men – especially if they have roots in Europe – know that they are possible carriers and, therefore, consider getting screening.

photo - Libby Znaimer, national spokesperson for Pancreatic Cancer Canada, will be the keynote speaker at One in 40: From Awareness to Empowerment, which takes place Jan. 8 at Congregation Beth Israel — Libby Znaimer, national spokesperson for Pancreatic Cancer Canada, will be the keynote speaker at One in 40: From Awareness to Empowerment, which takes place Jan. 8 at Congregation Beth Israel. *(photo from BRCAinBC Committee)*

Confirmed panelists for the One in 40 event are Dr. Rona Cheifetz, medical lead of the Hereditary High Risk Clinic, B.C. Cancer Agency; and Dr. Intan Shrader, who, along with Dr. Sophie Sun, is co-medical director of the B.C. Cancer Hereditary Cancer Program. The panel will also feature medical oncologist Dr. Daniel Khalaf of the B.C. Cancer Agency and Jewish community member Tovah Carr, a BRCA carrier. There will be a chance for audience members to ask questions.

Keynote speaker Libby Znaimer of Zoom Media is national spokesperson for Pancreatic Cancer Canada; she is a cancer survivor and a BRCA gene carrier. Her personal fight against breast and pancreatic cancer is the subject of the 60-minute documentary Cancer Saved My Life, which discusses “the BRCA 1 and BRCA 2 gene mutations that predispose people to pancreatic cancer, and the connection between BRCA and breast and ovarian cancer,” as well as the “groundbreaking research going on in Canada and Israel, where there is a BRCA-rich population.”

The BRCAinBC.ca website will be “a one-stop place for people to go to get information about the genes and the mutations that indicate the cancer risk and where they can go for private screening if they don’t meet Hereditary Cancer’s criteria or they don’t want to wait,” said Remocker.

Hereditary Cancer has a long wait list, she said, so the website will have some options for private screening. “We’ve researched and found a number of accredited medical genetic labs that do specific inherited Jewish genes screening and we know that, [for] at least two of them, the results are accept[ed] by the Hereditary Cancer Program.”

Currently, the cost for private testing is about $250 US, said Remocker. This alternative means that, “instead of waiting six to 12 months to get your first interview with the Hereditary Cancer Program, you get a saliva test, you apply. They send the package to you, you send it back and you get your results anywhere from two to six weeks.”

A person can then take those results to their family doctor, she said, as a referral is needed for the HCP.

The website will also feature personal stories of those who have been affected by the BRCA 1 and BRCA 2 genes, as well as links to current research and resources.

Michelle Capobianco, the executive director of Pancreatic Cancer Canada, will be in attendance at One in 40, Catriona Remocker told the Independent. “[T]hey are considering working with us to roll out similar events to Jewish communities across Canada to improve awareness,” she said.

To register for the event, which runs 7-9 p.m., visit bethisraelvan.ca/ event/one-in-forty.