Season 6 Episode 1: Living as a Previvor: A BRCA2 Story

We’re back—and it’s Season 6 of the GOSH Podcast! 🌟🎙 In this episode, our new co-host Sabrina sits down with her mom, Sharon Grover, a BRCA2 carrier and gynecologic cancer previvor. Sharon opens up about what it means to live with an inherited cancer risk, the preventative steps she’s taken, and how she balances motherhood, teaching, and her love of sports and the outdoors. This heartfelt conversation highlights both the challenges and resilience of living as a previvor, while underscoring the importance of family, awareness, and proactive health choices.

Resources:

BRCA in BC Website: https://brcainbc.ca/

BRCA Support BC: https://www.brcasupportbc.org/

For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at info@gynecancerinitiative.ca

Where to learn more about us:
Twitter – @GCI_Cluster
Instagram – @gynecancerinitiative
Facebook – facebook.com/gynecancerinitiative
TikTok – @gci_gosh

Transcript

00:00:01 Intro 

Thanks for listening to the GOSH podcast—The Gynecologic Oncology Sharing Hub. We share real, evidence-based discussions on gynecologic cancers, featuring stories from patients, survivors, researchers, and clinicians. Our podcast is produced and recorded on traditional unceded territories of the Musqueam, Squamish, and Tsleil-Waututh Nations. It is produced by the Gynecologic Cancer Initiative, a BC-wide effort to advance research and care for gynecologic cancers.  

00:00:36 Sabrina 

Hello everyone. My name is Sabrina and I'm the new co-host for the Gosh podcast. Today I'm joined by Sharon Grover, who is a BRCA2 carrier and what is known as a gynecologic cancer previvor. She also happens to be my lovely mother. A previvor is a little bit different from a survivor. While a survivor is someone who's been diagnosed and treated for cancer, a previvor is someone who hasn't had cancer but carries a high risk of getting cancer because of an inherited gene that runs in their family. In Sharon's case, that's a BRCA 2 mutation, which can significantly increase one's risk of breast and ovarian cancer. I'm very excited to be chatting with Sharon today. Sharon is a mum, a teacher and an amateur mountain biker. When she's not busy with all of that, you'll probably find her playing pickleball lacing up for a hockey game, or curled up on the couch with a book and her two labradoodles. Sharon is here to share her experience as a Brca 2 carrier and talk about the steps she has taken to reduce her risk of breast and ovarian cancer. 

Welcome, Sharon. Thanks so much for being here today. 

00:01:47 Sharon 

Thanks. I'm happy to be here. 

00:01:49 Sabrina 

So, I was thinking we could start way back at the beginning of your journey with all of this. I was wondering if you could tell me what initially prompted you to get genetic testing. 

00:02:01 Sharon 

So, my mom was diagnosed with stage 4 ovarian cancer when she was 51, and her diagnosis came after a car accident and some symptoms which weren't, uh, they couldn't figure out what was going on. So it was a very late diagnosis. She wasn't ill at all, but they found quite a big tumor and she lived and fought against ovarian cancer for 11 years. So she had various rounds of chemotherapy and surgeries, and one of the doctors she worked with out of Montreal offered her the option of genetic testing; not for her particularly, but for myself and my three siblings. So she had genetic testing done and discovered that she was a BRCA2 carrier, which meant that all her children had a 50% chance of inheriting the mutation. And I was given the option there to have genetic testing done because I was so closely related to a carrier. So that's where we got started. 

00:03:28 Sabrina 

Right. And before your mother was diagnosed, had you ever heard of this BRCA gene or had any idea of what it would mean for you and your future? 

00:03:38 Sharon 

Absolutely none. 

00:03:40 Sabrina 

I don't think that's surprising. I think there's been a lot of movement to increase awareness around BRCA and ovarian cancer risk in general, but it certainly wasn't the priority back then. 

00:03:52 Sharon 

I think that's true. 

00:03:55 Sabrina 

So we currently know that the model we have of genetic testing can be quite exclusive. So not everyone who necessarily wants genetic testing has access to it. And the researchers that work at the GCI are really trying to improve that. Can you tell us about your experience with genetic testing? Did you get it through the publicly funded province, I guess. Or did you have private testing? 

00:04:21 Sharon 

Well, it started with a visit to my family doctor in Ontario, so OHIP covered, and she referred me to genetic testing at Queens University. So I went that way and it was totally public. So there's nothing private about it. That's how we proceeded through the Cancer Center at that Kingston General Hospital. 

00:04:52 Sabrina 

Right. I think it makes sense that since you're directly related to someone they already knew was a BRCA carrier, they would have been putting you through the public system quite quickly. So that makes lots of sense. So let's go to the day that you actually received your results after getting your genetic testing, what was your immediate reaction to finding out that you were also a BRCA carrier? 

00:05:18 Sharon 

I guess I was fairly shocked actually for some reason I didn't think I would be a carrier; that optimism. It was shock and then sadness because as you know, the risks associated with it are pretty significant and I guess the things you can do about it are limited in scope in terms of... Well, you can monitor which tells you if and when you get cancer, but there's not much you can do to prevent it, Or in my case anyway, that's not pretty significant so I was pretty sad to learn. 

00:06:07 Sabrina 

Yeah, I can imagine that quite big news, especially that you didn't grow up knowing that this might be something that will happen and it's just sort of immediate after you've been through so much with your mother and her whole cancer journey. And I imagine having seen that and had first hand experience, it was probably hard to then know that there was a chance at least that could be in your future. Thankfully we have now since you knew you were a carrier. You had access to preventative options, but it certainly could be scary. 

00:06:31 Sharon 

Yeah, that's right. 

00:06:43 Sabrina 

Did you prepare yourself for the possibility that you might have a positive result? Or were you just going in kind of blinded? 

00:06:53 Sharon 

No. Well, I knew that I had a 50% chance of being positive so. I was. I was very well aware of my risk level. But I don't know how you actually prepare for that kind of news, because until you have the information there's not much to be done and so I waited until I had the information and then proceeded from there. 

00:07:23 Sabrina 

Yeah, that makes total sense. Is there anything that particularly stood out as being challenging in terms of receiving your results and there was anything that helped you navigate all those feelings that came after receiving your negative result or positive results? 

00:07:44 Sharon 

Well, I don't know if this is answering exactly that question, but what I didn't have, what wasn't really available at the time was much of a support network of information about people who had been through this particular procedure gives us because this was almost 20 years ago, and when I went looking for information from other people and how they had experienced it and the ideas for how to how to deal with it and where to go to support and things to think about it? It wasn't there or I couldn't find it. Anyway. There was the medical research you could find so I could learn about the statistics and the medical options that didn't have the personal information of survivors. 

00:08:37 Sabrina 

Yeah, I can imagine that's like, very must feel very lonely in your diagnosis when you don't have access to people who have been through it or who might be able to help even just outside of the medical stuff itself. I feel like there's so many factors that would be nice to have someone to chat with. And I think nowadays there's that's a lot more available, but I can imagine it must have been difficult for you. 

00:08:59 Sharon 

Yeah. In fact,I I wrote an editorial, I guess it's called like a short essay for and submitted it to The Globe and Mail about my experience. So it was really short, but it was. Because I hadn't had anybody. I hadn't heard stories I thought I would share mine, and I actually had a couple of people contact me or they found out they found ways to contact me to reach out to talk about it because they didn't have anybody either to talk with. And I thought that was pretty telling, that they were willing to talk to a complete stranger because it was somebody who had been through what they what was looming for them. So yeah, it was. I don't. I don't think I thought of it at the time as lonely, but just ... it was just too bad that I didn't have some other ideas. 

00:09:59 Sabrina 

Yeah, I actually recently read your Globe and Mail article that you wrote, and it's beautiful. I would like to say you very well written. Was it? It was fun and touching read. So after you had your positive result, the next steps generally for people are to start thinking about what they're going to do with that information. So what kinds of conversations were you having with your healthcare providers around what your options were? 

00:10:30 Sharon 

So I think I went mostly... I think I the genetic counselor helped a little bit, but I mostly went back to my own family physician and looked at options and there are like ongoing testing that can be done and I was already in a high risk testing program for both ovarian and breast cancer. So that was sort of ongoing already. But I had recently had a false positive on a mammogram and that sort of maybe think a lot about living for the next, you know, decades, hopefully with this constant fear that I my odds of getting breast cancer were actually quite high and just having had that positive Or that it was a false positive but that that one particular piece of information made me seriously decide I didn't want to live that way with this constant threat, so I I knew the options in terms of there were some drug options which would have mitigated the risk slightly or just testing which would tell you if and when you developed any kind of cancer, or there was the option to have surgeries to virtually eliminate the risk of cancer. Remind me what the question was? 

00:12:09 Sabrina 

I was just asking what the conversations you had with your healthcare providers were like. 

00:12:15 Sharon 

Yeah. So it was about the pros and cons of all these options, I guess, and learning about what the actual options were. So that's and it was always presented to me quite well in terms of here's the options and I felt like I would be well supported regardless of which options I chose like. It was very nNonbiased information, I thought. 

00:12:42 Sabrina 

Yeah. Were there any lifestyle or personal factors unique to you that you found to be particularly important when you were deciding whether or not to have maybe these invasive surgical options versus less invasive, for example, using those chemo preventions or medications like you mentioned? 

00:13:01 Sharon 

Yeah, I had finished having kids. So I knew that that like I didn't want more kids, so I didn't need or.... You know, I didn't need my ovaries anymore and I wasn't going to breastfeed again. And so that was important. Like my stage of life. And then I also have a good job where I had the opportunity to take sick leave and still have an income and that matters a lot because these are big surgeries and if I didn't have an income, it wouldn't have been an option. Or if I didn't have a means to, you know, be financially sustained. And then I also have a huge community of supporters who I knew would be helpful or yeah would help me along. So, without those things, I don't think some of the choices would be feasible. 

00:14:07 Sabrina 

Yeah. No, that's a great point. I think it certainly takes a village when it comes to the recovery time for from some of these surgeries. So Speaking of the surgery and or the surgeries in the end, you ended up having both a double mastectomy and a sapingo-oophorectomy and hysterectomy, which would be the removal of your uterus, fallopian tubes and ovaries, and then also the removal of your breasts. Very invasive surgeries you could say, but also the most protective when it comes to prevention. So that's very brave of you. Can you walk us through what the IT was like leading up to those surgeries and what kinds of planning you had to do in terms of work home life, family and how you're feeling leading up to those. 

00:14:58 Sharon 

Yeah. So I decided to have a hysterectomy first because it was I could do it laparoscopically and so it was a less invasive and It's kind of easier surgery. And so that was planned to do in my hometown of Kingston and this mastectomy surgery I opted to do the mastectomy and reconstructive surgery to all-in-one and that wasn't possible to do in Kingston at the time, and I think things have changed. But when I had it done, I had to go to Ottawa to do it. So there are lots of logistical things. And first of all, I had to... Well, I had to arrange it with the doctors, obviously, but then I had to arrange both my home, my life and my work life to make sure everything could continue. So my employer was fantastic actually and just said do it do what you need to do and let us know. So they were really good. It meant prepping to leave my work for months. And then I had to figure out ... because at the time my kids were little and so had to figure care out and my husband was and is still amazing and supportive. And my brother happened to be living with us at the time, so having him around was also really helpful. So for the first surgery was kind of, it's not minor surgery, but it's.... I was in the hospital for just a few days and then home again and not particularly useful at home but present. And we had a community of friends who brought meals every night to us. And that went reasonably smoothly, but it went very smoothly actually, and I recovered fairly quickly from that one. And then the second one was much bigger surgery and I had a friend in Ottawa who I lived with for the first week after coming out of hospital, so that was out post mastectomy and reconstructive surgery. And I had a friend in Kingston, who offered to take our three kids for the, she took a week off work and took care of our kids for a week and they were little. So that was a huge, you know amazing support that she provided. And then I had some complications, so I had to be returned to the hospital. And at that point I moved into my sister's house, who happens to live in Ottawa and opened up her home to us and my kids and my husband came to Ottawa at that point for a while and we all stayed there. So that that was that was a bit rough to say the least. And I don't know the technology currently because I don't really follow it, but at the time it had to return to the hospital post surgically, I think it was once every two weeks. And once I had moved out of Ottawa and back home, that meant a return trip regularly, and it's a pretty painful surgery. So there's lots of people outside of the health profession who stepped up and supported us, and without that I don't know how somebody could do it. 

00:19:12 Sabrina 

Yeah, it's again. It really takes a village when you're going through these surgeries that have potential complications. I think certainly they it's been, what, 20 years since then. So I think there's been some surgical advances and we can hope that maybe it's a little bit easier for people nowadays considering mastectomy as an option. Even after all of those complications and all those decisions, are you still happy with your decision to have had your preventative surgeries? 

00:19:44 Sharon 

Oh, absolutely. I mean, there was never a time that I questioned my decision, even when it was hard because it meant that I was giving myself the best chance of evading or avoiding cancer, given that I had a really high risk of one or the other, so I never doubted the choice to go ahead. 

00:20:11 Sabrina 

Yeah, I think that makes tons of sense. I think when comparing how difficult what you went through, how difficult the process, my grandmother, your mother went through, 11 years of fighting cancer, I think it's certainly puts everything into perspective a little bit more. Not to like minimize everything you went through, which was also very difficult, but I think that it's made you stronger to have seen and have lived through all of that to know it was worth it.  

00:20:42 Sharon 

No, absolutely. I was lucky to have the options that I had. 

00:20:47 Sabrina 

Yeah. And I can speak as the as the child of someone who went through this, I remember having an awesome week long sleepover with my best friend, and that was lovely for me. And I remember my mom coming home with her new water balloon boobs as she described it to me. So, so that was all fine and good. 

00:21:06 Sharon 

Yeah, there were some perks. 

00:21:11 Sabrina 

Ok, so when you reflect on this whole journey, do you think that having this mutation has impacted your identity or any of your relationships in your life since you've now known? 

00:21:30 Sharon 

Well. I'm sure it's impacted my identity because it's part of my life story, my experience. But I don't think it's changed how I feel about myself. I know that I was offered therapy services because some people struggle with their notions of femininity, and that wasn't something I felt I needed that. Yeah, that wasn't an issue for me, but I think everything, you know, in your life journey these challenges all shape who you are. And I would suggest in my circumstances that really strengthened a lot of my relationships with people because, you know, they were there for me. 

00:22:36 Sabrina 

Yeah, I can totally imagine that. And I also think you really have quite a determined and you're a very persistent and determined person, which I think certainly helps when you're faced with such a life challenge or something that could be scary. I would say instead of cowering in fear, you really faced it head on and we're quite an example for to me and my siblings as we might have to face this journey ourselves. So good work with that. And when you think about your mother's experience compared to your own, what does it mean to you to have had this information that you're a carrier and have had access to these potentially lifesaving preventative procedures? 

00:23:28 Sharon 

Well, I'm really grateful to her that she took the opportunity to get genetic testing done when it was offered to because I don’t think when she was offered it, she really even knew what it meant, and she took the time to figure out and to listen to because it had nothing no bearing on her own wellness like it was too late for her. But she did it for our sake, so I'm really thankful that she was open to the idea of this new technology and pursuing it and giving us this chance to have the information to make choices. Because otherwise, we would have just been completely ignorant. 

00:24:11 Sabrina 

Yeah, she was very ahead of her time in many ways. 

00:24:13 Sharon 

Yeah, absolutely. Yeah. She really was. And thankful to the people in Montreal who set it up and allowed her to do it. 

00:24:28 Sabrina 

Yeah, I mean, in my own research, I recently learned that only like 10% of people at least in BC who had ovarian cancer like she did, were even offered or got genetic testing back in 2002 when she would have had her testing. So she was lucky to have even been offered and then also brave enough to have gone through with it, and how that has impacted your life and will impact all of the future generations is huge. 

00:24:58 Sharon 

Yeah, it was a really important step for her to take and to sort of embrace it and say yes because it has a huge impact on us, like her four kids and all the grandkids. 

00:25:16 Sabrina 

And so when you think about these future generations of potentially previvors, what do you hope will improve or what do you hope will change? 

00:25:28 Sharon 

I think it's happening and I hope it continues that people are supported and offered the option to get genetic testing done and I hope we learn more about how cancer is passed along, and so the tests can be refined so they can be more accurate. And then I hope we get better ways to deal with people who are at very high risk because the surgeries I went through like, I'm fine now, but it would be nice if it didn't have to be so invasive. If there were other options to minimize risk, but without that being so hard. So I wish that everybody who had a significant risk, knew about it, was allowed to be tested for it, and then had better options to support and avoid cancer. 

00:26:33 Sabrina 

That is true, and I think that there are big strides being made to hopefully make those changes by the time next generation gets around to considering their preventative options. 

00:26:44 Sharon 

Yeah. Well, I think it's people like you who are doing this research and making it accessible to people. It's really important because there are people who don't know anything about this. And why would they? And it can be really scary and we need people to understand that, you know there are options and there are there are things to be done. 

00:27:06 Sabrina 

Yeah, absolutely. So when you look back at all of this, everything you've been through, what's one piece of advice that you wish you had received before or along the journey that you might be able to offer to our listeners? 

00:27:23 Sharon 

Well, that's a good question. I guess, I would want people to know that they're not alone, that, I mean, this diagnosis of being a possessor of a mutation is scary, but it's having the information is so powerful because that knowledge allows you to move and make choices that are well informed. So I hope that people do not get tested because they're scared of the results. Because for me to know what I was fighting against was the was really important and to know that there is support. Once you know if you are unfortunate and are a carrier, it's not the end of the world. There are really good options that you can take or yeah, you can take or you can choose not to, but at least you know what you're up against and so you might make decisions sort of accordingly. 

00:28:31 Sabrina 

Yeah, I think that's beautiful and I think anyone considering getting genetic testing can really benefit from that strong statement that it's not the end of the world and you can feel empowered by the information, not just scared by it. Perfect. Well, thank you so much for sitting down with us and being vulnerable, sharing your story. I think there's so many people that will benefit from this conversation just like they benefited from your article you wrote back in the day. And now that more conversations are happening around the happening around this topic, I think it'll have a much bigger reach and people will hopefully feel not alone in their genetic testing results or whether considering getting genetic testing. So thank you so much for sitting down. 

00:29:18 Sharon 

It's my pleasure and thank you for doing the research and for and for making the information more accessible to people. 

00:29:26 Sabrina 

To wrap up today's impactful episode, I'm joined by Catriona Remocker-Eddy, the co-founder and managing director of BRCA in BC. BRCA in BCis a knowledge mobilization organization helping to close the information and support gap for individuals at high risk of hereditary cancer in British Columbia. As Sharon shared in today's episode, going through genetic testing and making decisions about prevention can feel lonely, especially when you don't know anyone who's facing the same struggles today. Catriona is here to talk about BRCA in BC, and how they support carriers and those considering undergoing genetic testing. Welcome, Catriona. Would you mind telling us a bit more about BRCAin BC and the organizations mission? 

00:30:13 Catriona 

Sure. Well, you you've mentioned kind of our main tagline there, but you know primarily BRCA in BC is a nonprofit here in British Columbia that is dedicated to supporting people at increased risk of hereditary cancers, especially those linked to the BRCA mutation. And our mission is to close that information and support gap that families at high risk of cancer often face. We raise awareness, connect people with accessible information about genetic testing and preventative cancer care, and we build supportive communities. So our big pie in the sky vision is to help cut deaths from BRCA driven cancers in half over the next 25 years. 

00:31:10 Sabrina 

Big goal, but very important stuff. So can you tell me a bit about what kind of support you offer to someone who might be considering genetic testing? 

00:31:21 Catriona 

Yeah, we primarily help people understand their options for genetic testing. That includes giving a clear overview of the BC Cancer Hereditary cancer program that's available, which now has a better website than it once did but can still be a little bit confusing and unclear for people who are unfamiliar with it. So we try to really get that information out there and make it really clear and accessible, but importantly, we for people who don't qualify for publicly funded testing we also provide clear information about private self-paid testing with descriptions of lab options available for Canadians and up-to-date information about the benefits and drawbacks of each option that folks might need to consider when they're choosing a test. Some other gaps we try to address are in the affordability of testing, so you know access is really a key value for us. And so we offer a cursory program for people to help cover the cost of testing. If they couldn't afford it and they didn't qualify for public testing. We also share simple, easy to understand educational resources so people understand what testing involves, what genetic counseling involves what it might mean for them and their family, and how to prepare for the genetic counseling appointment or even create a family history. And then just right now connected with testing, we are currently partnered with BC Cancer to offer special program called the Jewish BRCA Testing Pilot Program which is a three-year pilot right now providing an opportunity for free BRCA testing for any adult in BC and Yukon, with at least one Jewish grandparent, and that is on until March 31st, 2026. 

00:33:35 Sabrina 

Wow, so many great resources that anyone listening who's considering getting genetic testing, especially for a BRCA mutation, can consider looking into. Could you tell us a bit more about the support that you offer to carriers or people with a positive genetic testing result? 

00:33:51 Catriona 

Yeah. And a positive result can obviously be and understandably be quite emotional and feel very overwhelming, especially at first. So support is really important. So through the provincial program, people are of course connected with the high risk clinic here in BC, which supports them in accessing their high risk screening and connecting them with say, preventative surgical options if that's something they're interested in. We are more focused on ensuring carriers have their informational, social, and psychological needs met during these sensitive times and thereafter. So to meet those needs, we currently offer carriers monthly virtual psychoeducational sessions on topics of concern to them, like breast reconstruction options, new research and cancer prevention, family planning, fertility issues, or even just managing scan anxiety. So whenever you're getting your tests back, you're every six months scans. You know things like that that carriers deal with on a pretty regular basis. So these are opportunities to be in a safe online space with other carriers and our local experts. We learn together and ask questions that, you know, really matter the most to our carriers and we find that people really find the support makes them feel a lot less alone in their experience as a carrier. So it's a really valuable resource we found. We're also really excited that we have a new initiative launching this fall, which is a “learn to run” group. And so that and it's combined with a “walk and roll” group in the lead up to CBC's run for the cure and so this is a little pilot project we'll be offering weekly on Tuesday evenings for the next 5 weeks and everyone will be given the opportunity to learn how to run a 5K or walk together, and then they can join in on the team on October 5th. And so we hope this will further support carriers to connect with one another. Learn a new skill, connect with their bodies and just have some fun together. 

00:36:34 Sabrina 

Wow, again, so many great resources that anyone who's a carrier can learn from, or enjoy. Can you tell us more about where people can find more information about BRCA in BC in general? 

00:36:48 Catriona 

Yeah. The best place to start is of course our website, so it's brcainbc.ca. There you'll find information on testing, option support, educational resources. We also have a partner site, so brcasupportbc.org where you can find more information on the upcoming educational sessions or watch past recordings of previous sessions. And of course, the BC cancer Hereditary Cancer program is another excellent resource for anyone in the province who wants to learn more and access more information just about public genetic testing in general. And for people who are looking for more information in general, like beyond what we can offer and are concerned about, say hereditary cancer mutations other than BRCA because it's not the only hereditary cancer mutation out there, I definitely recommend also the American website force, which stands for facing our risk empowered. They have a wealth of resources on every topic that relates to this issue. And while the information won't be BC specific, it can at least fill some gaps that we don't have covered yet here, so those are some of the best resources I think out that are out there at the moment. 

00:38:22 Sabrina 

Perfect. Thank you so much for sharing those and thank you so much for coming on the podcast today. It was lovely to have you. 

00:38:30 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 Gainey, Cancer, initiative.ca.