Episode 13: Strength in Numbers

For these next two episodes of the GOSH Podcast we are joined by Jane Remocker, who founded the BRCAinBC in 2018 to honour her late husband, Jeff, who passed away from prostate cancer. Jeff was unaware of his high risk for gene mutation because of his Jewish ancestry, leaving him to only know about his BRCA2 mutation a few days before he passed. Sharing his story, Jane narrates how the BRCAinBC came to be after his passing and how
strength in numbers has mobilized their community advocacy. You can learn more about the BRCAinBC here: https://www.brcainbc.ca/  

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Transcript

Introduction 

Thanks for listening to the GOSH podcast. GOSH stands for the Gynecologic Oncology Sharing Hub, an open space for real and evidence based discussions on gynecologic cancers. We'll share the stories of gyne cancer patients and survivors and hear from researchers and clinicians were working behind the scenes to improve the lives of people with gynecologic cancers. Our podcast is produced and recorded on a traditional unseeded territories of the Musqueam, Squamish, and Tsleil-waututh nations. It is produced by the Gynecologic Cancer Initiative, a province wide initiative in British Columbia with the mission to accelerate transformative research and translational practice on the prevention, detection, treatment, and survivorship of gynecologic cancers. 

Hi, I'm Nicole Keay, and I'm Stephanie Lam and you're listening to the GOSH podcast. 

 Stephanie 

Today we'll be talking about hereditary cancers and BRCA mutations. Hereditary cancers happen when a gene mutation that increases cancer risk is passed down from a parent to a child. Being born with that gene mutation means that a person has a higher chance to develop specific types of cancer and may have cancer at a younger than average age. Mutations in the BRCA gene can be inherited, and those who inherit harmful variants and these genes have increased risk of several cancers, most notably breast and ovarian cancer, but also several additional types of cancers, including prostate cancer. Understanding hereditary cancer risk may offer some opportunities for prevention and families. If you have concerns about cancer in your family, talk to your healthcare provider to assess your risk.  

Okay, so welcome back everyone to the gosh podcast. So today we have a very special guest with us, Jane Remocker. So I'll just introduce her very briefly. Jane is a retired pediatric occupational therapist who immigrated to Canada in 1971 and began her career in adult mental health working at VGH, UBC Health Sciences Center, the GVMH s Mount Pleasant community care team and then BC Children's Hospital. Following that, Jane moved into a private practice and opened an occupational therapy clinic in Vancouver. Specializing in treating children with autism and develop developmental delays. She met her husband Jeff in Vancouver and they were happily married for over 40 years. Jane joins us today as a member of the BRCAinBC. A group was she and her youngest daughter started in 2018 in memory of her husband. So welcome to the podcast. Jane, we're really excited to have you. Do you want to start off just by you know sharing a little bit about your personal connection to BRCAinBC and why you are passionate about this area? 

 Jane 

Certainly I will. I have an obviously paramedical background and very have always been very interested in research but really know nothing about genetics. In 2015, my husband was diagnosed with aggressive prostate cancer stage four, and there in followed 11 months which included some chemo and he did well. But when he started to relapse, he was invited by his oncologist to join a drug study, which he did. Backing up, when he got his initial diagnosis, he was convinced that he must have a genetic mutation driving this cancer because actually, he had very few symptoms, except for pain in his right hip, which didn't seem to respond to typical painkillers. And it took two to three months of various tests to figure out in fact that he had stage four prostate cancer and it had metastasized to all his long bones and his liver by the time he was diagnosed. So, we did the chemo and he entered the drug study because he had decided once he got the diagnosis, he went, he approached the hereditary cancer program here in BC to see if he could have genetic screening. So they take you in there, and take a family history. And he did, he had insufficient cancers in the family for, toward the genetic screening, and so he was denied it.  

Now, what we didn't know was that as a Jew with grandparents who came from Poland and Russia, that of course, that he was at much higher risk for inheriting a Jewish mutation and I'm not sure anybody ever asked him of his ancestry. The cancers that were in the family were only colon, or colorectal cancer, which his mother had. But he had a first cousin who had early onset breast cancer. She lives in Leeds in the UK. Originally, we were both from the UK, Jeff was from Glasgow. And her and his first cousin, Susan, oldest sister, actually died just over a year ago from colon cancer and she was living in Washington, DC at the time. So he had insufficient history. And of course, that is not uncommon in families whose grandparents or great grandparents lived in Eastern Europe, where over successive, you know, 2000 years, there were attempts by at various times to annihilate the Jewish community. And so you got what was called the bottlenecking effect of genetic material being concentrated in small communities. And travel, of course, was not all that possible. And then, in the 20th century, prior to the Second World War, people fled from Europe, and went literally all over the world. But they had also fled up before the Spanish, during the Spanish Inquisition, and had also gone around the world. And it's been fascinating for me in this process of working on this committee, to have friends come up to me who have no knowledge, who don't identify as Jewish and say, guess what, my son's just been gone to Ancestry.com and he's 25% Jewish, or my husband has just found out that he's 50% Jewish.  So it didn't surprise us after the fact that, in fact, family history screening had not identified Jeff.  

So, he, after, yeah, he, he went on the drug trial, and it became apparent that the drug wasn't going to help him. So his DNA analysis, which is part of being in this drug study, was fast tracked. And three days before he passed, his oncologist phoned us with the result that he was BRCA2 positive, and actually don't know which of the mutations and then then he passed away, actually, three days later. When the rabbi met with us, and it's customary in the Jewish community for the burial to happen very quickly. So very often within 24 hours, because we have family in Israel, back east, in Canada, and the UK, the funeral could be delayed three days, and he sat us down to discuss the eulogy. And at the end, he said to us, what I have, I'm there with my three children. What do you want me to do with all the money that will be donated in memory of Jeff, you know, that he was very well loved in the community. My husband had a wonderful sense of humor and was very sociable. And Katrina said, well, he had this BRCA2 mutation. And we had, we don't know anything about it, and none of our friends do. So we wonder if we should do a community event education event, for the Jewish community in memory of Jeff and use that money.  

So fast forward a couple of years, because it took the two of us a couple of years before we really had the energy to start thinking about putting a committee together on a subject that we had no knowledge. And we went back to the rabbi and discussed it with him, and sort of talked about some general goals. And he was incredibly supportive and enthusiastic, and he had in fact, saved the money and we had about well over $3,000 that he had put aside. And we sat down then we he said, okay, well, we need to put a get a committee together and we shared the responsibilities. He invited four people, he said, ‘I know four people who I think would be interested’, I said, ‘I know four people’ Katrina said she would, know four people and we went away and contact these people. And not one of them said no. The rabbi came to us and said, ‘I wish all my committees with this easy’. We had an initial meeting with that, the 12 of us. I guess there were 14 of us, and it included four community members who were mutation carriers, all women in various stages of, you know, treatment and being followed. And we had our health literacy expert, we had Katrina with her experience in public health promotion. There was, well, I didn't, the skill I bring is that I know everybody, been around for a long time, and I'm quite involved in the synagogue. So I have the contacts in the community. And we had a geneticist. We had somebody from CGO, which is the Jewish organization that looks at things like insurance advocacy. Nationally, it's a national organization. And off the top off of my head, I can't remember who else was. But anyway, and then we the second meeting, we actually reached out to the hereditary cancer program and to, there are a couple of other Jewish agencies. And so for the second meeting, we had five members from, a staff from hereditary cancer program, come and brainstorm with us about where we were going to go. And that included the two clinic directors and the lead of the high-risk clinic, a counselor and the assessor, the person who does all the greet, meeting and greeting and deciding who's eligible. So it was a very, it was an amazing meeting. And three of those members, staff stayed on the committee. We had a really good, well balanced committee with people who had reached into a variety of fields. And we set to, to organize our community event. And that involved us doing various things, not only organizing the program, but doing background research. And that's where Katrina and I learned, and I learned, particularly from all Jeff's friends who, none of whom, and particularly his male friends, none of whom had a clue that they could be a mutation carrier. We, women in the Jewish community, we're all aware that there's a much higher prevalence of breast cancer. I know lots and lots of lots of friends who've had a brush with breast cancer. And I've had several friends who've had ovarian cancer, and it's always diagnosed at stage four, which is such a shame, because by then it's very hard to treat. And but the men hadn't a clue. Not yet. 

Nicole 

I have to admit, I didn't know that until I went onto your website and read through, you've got your BRCA and men and read through that I had no idea. 

Jane 

Yeah. And nor did we, and nor do they. So the this, the scope of the meeting was that we, we and of our committee, we decided we are going to be gender neutral. We need to let the men know that they are as great, at greater, as great of risk as women of inheriting one of these genetic mutations. Now, that doesn't mean that they're all going to have cancers, but they can pass them on. What we learned was that the risk factor for Jews is one in fourty to inherit one of these genetic mutations, compared with the general population, which is one in 400, to 1000, so its much higher concentration. We learned from Jeff's treatment, that his physicians, none of them, not his family doctor, not his urologist, not his oncologist had a clue that he might have inherited a genetic mutation. I'm delighted to say that his oncologist now is well aware of that and that he wrote me a wonderful email saying that actually knowing Jeff had actually changed the course of some of their research here.  

 Both Nicole and Stephanie 

Oh wow.  

Jane 

And it was just hope that if he had a genetic mutation, that that information would help others. So that already had had that happened quite early on. And so the focus for the community event was on just putting together this community event and we had no idea whether 30 people would show up, which 30 would be it would be a success. And it took us a couple of years, we reached out to a well-known speaker called Libby Snamer in Toronto, who is, who is a she's very well-known there and has done a lot of public speaking and is a BRCA advocate. And so we negotiated with her to come in as our keynote speaker, and we put together a panel of experts including the two co-directors of the hereditary cancer program and the medical lead, a young woman who is a genetic cancer carrier, and director of the local Prostate Cancer Foundation. And the plan was that Katrina would do a little education portion about the BRCA genes. We'd have the keynote speaker, and she was amazing. And then we would have the panel and it was a two-hour event with a good 45 minutes of questions. The audience was amazing. You could have heard a pin drop, and over 200 people showed up. 

Both Nicole and Stephanie 

Wow.  

Jane 

Afterwards, my focus and of course, Katrina’s is also about evaluation. You know, what, how was the event received? It was held in January 2020 and within a couple of weeks afterwards, we sent out a very simple and I mean, simple evaluation form. And we got about 30% response. And basically, it got, everybody rated it as very good or excellent. There was a lot of feedback about people who said they had learned so much. I mean, after the meeting, we broke up for coffee, we offered tea and cookies. And the energy in the room was electric. I was overwhelmed. I couldn't get away for tea or coffee because people kept coming up and talking about how professional it was. And I knew it was good. I knew it was good. So out of that, well, yes, after that meeting, came a couple of things that were important. First of all, only about 10 men came out of 200. We realized that our reach was quite limited; that it was January, and there was a threat of snow. And most people were really quite local. We reckon that we didn't really even reach much into Richmond, in spite of all our advertising to all the synagogues. We certainly didn't get any further didn't get anybody from North Vancouver. And so we realized that, you know, while it had been amazing, it was pretty limited in its outreach.  

We also had feedback from several people, that when they had contacted their family physician, to be referred to the hereditary cancer program, they had been refused. They won't accept you, you don't have enough cancers. You know, there were a number of excuses. And I phoned the hereditary cancer program, my contact, and the result was that they said, anybody who has Jewish heritage can just refer themselves. So that was really positive. Unfortunately, they had to change that because, you know, funding is and staffing is limited. So we've just heard that we're back to family physician referral. So, um, we also had been contacted, so this was some of the surprising things, I was responsible for marketing. And at the very last minute before I set off on a trip to Europe to do some, visit my sister, I had contacted the local Ovarian Cancer Foundation, Prostate Cancer Foundation, and Pancreatic Cancer Foundation's because by then we knew that these were also cancers that we, as Jewish community were at a higher risk of possibly getting, and I just sent them our poster. And then I left for Europe. And, actually, I went to Norway, and we did a walking trip in Norway before the snow fell.  

Nicole 

That sounds lovely.  

Jane 

And I was sitting in my sister's living room. About two days before I flew home from the UK, and into my , and my iPad came three emails. One from the executive director of the Prostate Cancer Foundation, one from the executive director of the Pancreatic Foundation, and one from the executive director of the Ovarian Cancer Foundation, saying, ‘we are really interested in what you guys are doing in BC.” 

 Nicole 

That is amazing. 

 Jane 

‘And can we attend?’ So of course I wrote back yes. ‘And can we talk to somebody.’ So I sent emails off ‘Katrina, can you phone’.  And it turned out that they had we're in the process of forming a coalition and were going to be working with AstraZeneca. 

 Nicole and Stephanie 

Oh, wow.  

Jane 

So they sent representative to the meeting. And we had a meeting the next day after the 2020 January event, we met with the, this representative from Toronto, and had a just discussion about potential collaboration. And then the pandemic started. And that's all now on the back burner.  

 Nicoe 

Right.  

 Jane 

But it was, that was the first time, well, it wasn't, it was really the first time that I realized that maybe we were doing something quite important. The staff at the hereditary cancer program had said, what you're doing is very important, and we couldn't be, we couldn't have started it.  

 Nicole 

Oh, wow.  

 Jane 

The fact that it is community led gives it a power that we don't have.  

 Nicole 

That is so true.  

Jane 

That was very powerful information for Katrina and myself to realize that somehow we would, in fact, doing something that was perhaps bigger than we had imagined. And it was after that event that we started to think bigger. And we then began to plan in late in 2020, a province wide webinar. And again, I had done all the fundraising for the first event. And we got actually some really nice, big, fairly decent donations managed to put the event on for around $12,000, including flying this keynote speaker in, that was really our major expense. And all kinds of in kind help was provided by the synagogue. And we had met with in the, in the planning stages with the executive director of the Jewish Foundation of Greater, Jewish Federation of Greater Vancouver. And we went in, the rabbi and Katrina and myself went to this meeting, and the rabbi introduced us and said to the executive director, ‘we haven't come to ask for money’. And he just burst into laughter and said, ‘so why are you here’? Well, we just would like to let you know what we're doing. And so we spent, had a very productive hours meeting. And at the end, he said, ‘well, we can help you. And we'll give you in kind support with marketing, all of our organizations and so on and so forth’. So, so where are we? So in the, in the pre planning for the 2020 January event, we also realized that while doing our research, that we were constantly involved with societies and charities in the United States. That there was really nothing local, easily accessible, and you know, what it's like going on to, you know, onto the internet, it's a rabbit warren, and you get tired, and then you give up because you, you're just kind of you don't know where to go next. So that was when we decided we should develop the website, with just information for BC residents. 

 Nicole 

It's incredible. Well I think that’s so, I mean, you know, from my experience, from your experience, um, for those of us, I think, who had a little bit of knowledge of the healthcare system, it can still be overwhelming and challenging to navigate. And we've talked about this before on the podcast. For those who, you know, do not, it's a lot harder to advocate and empower, and be empowered to ask those questions and seek that information and know how to navigate through. So you know, that's where community groups like yours just really do such a benefit. 

 Jane 

Katrina designed it, worked with a web designer, we hired a web designer, she worked with a web designer. She I think that word is populated. She basically everything. She and I did the research. My particular responsibility was to research alternatives to public funded genetic screening, in private medical genetic labs. So I made, I did a lot of research into that. And we came up with three that were accredited in the United States would accept inquiries for screening from British Columbia residents that they could pay directly, and that hereditary cancers would accept their results. And so we went on, we're not in the business of promoting specialists. We're not in business of promoting anywhere. We're just in the business on the website of providing information sourced as accurately as we can, it’s always under constant review. And Katrina does a lot of that. But we work hand in glove with hereditary cancer program. And so that was launched, the website was launched at that January 2020 event. And one of the issues that came up when we were trialing the website launch prior to it's actually been put online was we kept, when we would, put we chose our domain name BRCAinBC.ca. And every time we put it in, we came, we got to AstraZeneca. And their research the drug, the genetically focused treatments that they're developing. So we mentioned that to when we had the meeting with the representative from the pancreatic society, oh, gosh, I'm having the. Anyway, the representative who came from Toronto, and she said, ‘Oh, leave that with me. I'll call AstraZeneca’, which she did. And they said, ‘oh, well, that's not good. We'll give them the domain name’. We just bought a whole bunch of domain names with BRCA in it in case.  

Nicole 

So that's amazing.  

Jane 

AstraZeneca had to just gave, you know, the BRCAinBC.ca domain name. No money, nothing. They just gave it to us. 

Nicole 

That's wonderful. 

Jane 

It was wonderful. 

So after that, we then focused on doing our province wide webinar. And of course, it had to be redesigned because it was only it could only be an hour, we know that everybody's tolerance for sitting in front of screens. So we basically follow the same format. Katrina sourced two speakers. A woman called Amy Byshame who's the BRCA respondant and calls herself the BRCA responder. And she's from the US. And sourced a man in Las Vegas, a fellow called Matthew Seaton. And those were our to two keynote speakers, and they gave their personal stories. And then we had a panel of the same experts and a virtual q&a. And we evaluated that event. And we had much more specific data at that time, we actually did count men and women and walking in as people came from, I had done the research into where the, the Jewish community was clustered in BC and 75% of it is in Vancouver, Greater Vancouver, sort of out towards an including Chilliwack. And, you know, up and down the coast. 13% on Vancouver Island, and the islands, and the rest are scattered around British Columbia with a fairly decent sized community in Kelowna. And so we were able to as we then ask people, where they had signed in from, and we had good representation, which very much reflected the census numbers of percentages of what where Jews are living. And again, we had excellent response, of, you know, good, or very good or excellent presentation, and we had a whole lot of questions that we couldn't answer. And they were all answered by the hereditary cancer Doc's put on our web. So that was, that was last year. And then we and we, we then set to to decide what whether we would carry on. 

 Outro

Thanks for joining us on the GOSH podcast. To learn more about the gynecologic cancer initiative and our podcast, make sure to check out our website at gyne cancer initiative.ca