GOSH Podcast

Episode 12: Raising Awareness and Funds for Ovarian Cancer - One km at a Time

May 02, 2021 Gynecologic Cancer Initiative
GOSH Podcast
Episode 12: Raising Awareness and Funds for Ovarian Cancer - One km at a Time
Show Notes Transcript

On this episode of the GOSH Podcast, we are joined by Bianca Hayes, a fierce gynecologic cancer advocate. Hayes left Vancouver on June 16 and pedalled 5,900 kilometres over 20 days to raise money for ovarian cancer research -- a cause near and dear to her heart after her sister, Katrina, died of the disease in 2018. Sponsored by A&W Canada, Bianca claimed the title of the fastest woman to bike across Canada in Summer 2020. She shares her journey with us as she continues to raise awareness and money for ovarian cancer.

Stay connected with Bianca to learn more about her advocacy work! 
A&W - @awcanada
Bianca - @theovariangang  or https://www.biancahayes.com/

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

Where to learn more about us:
Twitter - https://bit.ly/3jsViHM
Instagram - https://bit.ly/3dRQsCF
Facebook - https://bit.ly/3knUgOw

There were women in the gas stations and Tim Hortons. Like you're in the middle of nowhere in these really rural communities and you're finding people who have been affected by the same thing.

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 who are 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. 

 Nicole

Let's get right into it. So today, we have the privilege to speak with Bianca Hayes on the GOSH podcast. So just to introduce Bianca a little bit after losing her sister to ovarian cancer at the young age of 32, Bianca put her efforts towards fundraising. So just three years ago, she took up cycling and completed her first ride to conquer cancer with the BC Cancer Foundation. As she was started started to think of bigger challenges that would help bring attention to ovarian cancer, she looked to cycling again, first competing a ride to San Francisco in 2019. And then the summer she set out to ride across Canada becoming the fastest woman to bike across the country. Her philanthropy and drive to raise awareness will help create a better future for women with ovarian cancer. So thanks so much for joining us on the Gosh podcast Bianca.

 Bianca

Thank you for having me.

 Stephanie

So I know I've spoken to you about your work before. And I did mention briefly just now that you've done two rides to raise money for ovarian cancer. So do you want to maybe just start off just by telling us a little bit about your motivation? You know, why do you do what you do? And why are you so passionate about this work?

  Bianca

Yeah, um, so I mean, my, my sister was diagnosed and, and died very quickly, it was, it was a huge shock. I mean, she was so young that, you know, the entire time during her cancer treatment, it sort of felt like, like, I wasn't believing in her if I kept looking at the statistics, and like, generally the survival rate of people with ovarian cancer and so I just sort of stayed away from it. We didn't really talk about it. She she was determined to just just live in the moment and and spend as much time with her family as possible. And so it was really after she died, that, you know, I started learning more about it, and inevitably getting more and more angry, the more I learned. And just going like, okay, something needs to be done, I need to help out and raise money. And you know, what is what has been happening? Like, why is it 50 years, which is like sort of a number that gets thrown around a lot. It's been 50 years since any major breakthrough that's sort of changed the survival rate for women with ovarian cancer. And just sitting in I was really at her memorial that I heard that for the first time. And you just sort of were sitting there just going like, ‘what the fuck is going on here?’ Sorry, am I allowed to swear? I should probably not. What what the fuck is going on? Like, you know, you hear about, there's marches, there's walks, there's runs, there's fundraising events, and you see breast cancer ribbons on everything from, you know, socks in the NFL, to food packaging. And then you're like, but this is killing how many women and the survival rate is is what? And it just, it blew me away. And you know, it started off angry, and then ended up being something that I was able to get a lot of my grief out in training. So while I was sort of doing what felt like really long rides to start with, I'm going to be biking for maybe two hours, and just getting ready for the first ride to conquer cancer. I just found it really therapeutic. It was nice to just sort of be by myself. And you know, it's the only time that's it that is really socially acceptable to just start talking to yourself and essentially talking to my sister as well, because you're alone on a bike in the middle of the road, and no one can hear you or think that you're a crazy person. And I found a lot of solace in that. And you know that, finishing the first ride to conquer cancer, it's such a group and such a community event. You know, everyone's crying at the finish line. Everyone's hugging like, you're just on this, like this amazing roller coaster of emotion at the very end of it. And yeah, and then as we were leaving, I looked at my boyfriend and I was like, I think that if I actually trained properly and, you know, put some effort into learning how to cycle a little bit better, like I could do something longer. You know, people do these crazy events that you hear of like Terry Fox and onwards, right and even to someone like David Goggins now who's doing these insane, ultra-marathons, and raising money for veterans, and people, just they, they get interested by stuff like that it sort of gets people's attention. And I just started thinking, okay, like, I could probably do something like that. I mean, you know, weirder people than me have done it, so why not? And, and so I started just cycling, and I looked up how far I could probably get in the vacation time that I could take off work and San Francisco was the first one. And I was like, I could do that in 10 days, and then, you know, drive home over that weekend and be back at work on Monday. So let's go there first. And I finished that one and started looking to cross Canada. And yeah, just, you know, finally came to fruition this past summer. So it was, um, it was a great experience. But you know, it took a big toll. It was it was really, really difficult. And really amazing, just doing both of those and meeting people along the way. And, you know, they inevitably asked you what the hell you're doing in the middle of nowhere on a bike. And so telling them and and everybody's got a story about cancer, especially doing this past one this past summer. Like, there were women in the gas stations and Tim Hortons. A couple of women had cervical cancer, one woman had ovarian cancer, one woman had breast cancer and just, you know, you start really noticing it, like you're in the middle of nowhere, and these really rural communities, and you're finding people who have been affected by the same thing. And that really sort of brought it home. And you know, you don't have the same, the same finish that you do like a ride to conquer cancer. But the sort of the entire journey gets gets to be that rewarding because of those those meetings.

 

Yes, literally. Wow, how long did it take you to get across Canada? 

 

19 days and 18 hours.

 

Wow. What a huge accomplishment.

 

Yeah.

 

How much riding did you do a day?

 

So I was on the bike, I would get up at like, three o'clock, four in the morning, get on the bike, and I would finish around midnight. So it was Yeah. So I mean, I would take breaks in between, I think breaks probably added up to, to a few hours a day. But um, but yeah, it was it was like twenty to eighteen hours a day. It was pretty incredible.

 

Yeah. Wow. Yeah. That's huge. So Bianca, you had a goal to raise money for ovarian research. And in doing so you were the fastest woman to ride across the country? How did that feel?

 

It was cool. It was. I mean, I wanted to do it faster. So initially, the the goal was to do it in 15 days, so I could set the Guinness World Record. But because I didn't reach that cut off, and it took me sort of longer than expected. We had every issue in the books, because of course, you know, we had RV breakdowns. I had a flat tire pretty much every day. I mean, we're very, very spoiled. I'm not sure if either of you bike, but especially road cycling, like the the terrain of the road really changes how fast you can go. And yeah, there was a lot of very bumpy roads, a lot of roads that hadn't been properly cleared after the winter. So you know, a lot of them put sand down on their highways and road bikes plus sand means not falling on your face. So there were a bunch of sections, where I was just swearing for hours on end, because it was like what is going on, this is not what this should be. Yeah, I think COVID sort of delayed the highway cleanup. But it was really cool. It was really intimidating to do. Just being alone on stretches of that highway, especially at night. Like I had lights all over me. I had like a headlight on we had lights that were pointed down at the the back tire and the front tire. And you know, you're still being passed by semi trucks with less than a foot of distance between you and them. And that's really scary because as the current of wind sort of takes you in, it sucks you towards the trucking and pushes you away. So you've got that coming as well. And there's pretty much no shoulder. There's zero visibility out of that side of like the tiny light that you have shining in front of you. So that was definitely the most nerve wracking part of just thinking like, I might get hit by a semi truck doing this and being half asleep in the middle of all of it as well. I mean, it was not without its fair share of of dangers. But it was a great feeling to finish and just know that there have been so many people that I ran into afterwards it was like I was following your link and I could see your little red dot going across the country. 

 

Yeah

 

That was really interesting because you know, I I was so out of it and not really paying much attention to social media or much of it until the very end and then seeing how many people have been following along and sending me these messages. It was it was amazing. Just seeing how many people just sort of you know, especially in the middle of COVID and lock downs and being inside their houses. It was like, well, no sports are on TV. Let's see what Bianca is doing. But yeah, it was awesome. And, and just really cool to see how many people were really following along and, and donating as well, like we raised over $40,000. And wow, yeah, it's been, it was amazing.

  

What was your original goal that you set out?

 

I wanted to raise $100,000, and then COVID hit and I sort of realized I would probably need to adjust my expectations for it because nobody was working and obviously no one has very much money. But um, yeah, it was, it was a great thing to do, especially this time, because now in two years, I want to go again. I think I can I know where I can shave off the time and how I can do it faster and and exactly sort of the method I'll need to follow in order to make that happen and bring a little bit more awareness and you know raise that raise that horn again, and get people interested.

 

And Bianca, how was the how was the training like for your ride across Canada?

 

So it was actually kind of helpful that there was a worldwide pandemic. I think I'm the only person that benefited from that, because I sort of turned from working 40 hours a week to just biking 40 hours a week. So it was nice that I didn't have to try and juggle that. And because near the end, I had gotten called back, I think three weeks before I left. And so doing all of like seven hours a day of training and trying to fit that sort of before work and then after work and then still sleep properly and still have a lot. Yeah, so that was that was pretty intense. So the lockdown actually helped quite a bit because I was able to spend that three months just on the bike, essentially. Yeah, it was just lots of biking. Lots of sitting at home, I had an indoor trainer. So I was just inside my house sitting on my bike. I think I watched everything on Netflix, but it was good. Yeah, it was it was pretty intense. But I don't think I've ever been that hungry. It's just a whole other level of what you need to be taking in in order to just exert that much but it was yeah, yeah, it was. It was pretty crazy. But it was Yeah, it was very, very lucky that the lockdowns happened because of that, because I was able to just focus directly on training for it. So balancing work, and that was, thankfully only for two weeks.

 

Did you have decent weather? 

 

Yeah, we lucked out. I think I had, I had one day of really intense rain. And that was in Northern Ontario. And it ended up working out really well because that was also where mosquitoes and bugs were the worst. Like, if I stopped for more than two seconds, I was just getting swarmed by like horse flies and mosquitoes and clouds so thick of them, it was the most disgusting experience I've ever had. Just being swarmed, like, they go in your ears and up your nose, and in your eyes, it was absolutely awful. So I welcomed the rain that day, it was really, really nice, because it sort of cleared out the worst of it. But the rest of it was sunny and and really really nice. I I honestly I couldn't have I couldn't have asked for a better better weather. It was amazing. 

 

That's good. 

 

Um, so what would you say has been the biggest learning lesson while doing these rides?

 

Um, honestly, it's just been getting connected with like, just being so lucky to be able to meet the people with OVCARE at the BC Cancer Foundation. So through doing both of them and getting connected through the marketing manager, through Nicole there, and then meeting some of the OVCARE team this year round, with Sandy and then getting introduced to like David Huntsman, who, you know, is the lead researcher for ovarian cancer and getting to talk to him and just being like, ‘oh my god, okay, hi’. I never thought I would be speaking to, you know, the person who's the head of the research there and, and the head of such groundbreaking research it for ovarian cancer worldwide. So that's really been the biggest thing because as much as it's, it's a physical thing and something that, you know, is an individual effort that I'm going out to do. I mean, for the most part, it's just it feels like I'm just sort of standing there and jumping up and down and like sending out smoke signals and just being like, okay, are you paying attention now look over there and listen to what's going on here because that's what it's about. Like I don't care, I'll get on a bike and do however many hours of cycling every day. But unless it's getting attention to ovarian cancer, like it's, it doesn't really matter to me what I have to do but that's the main focus of it. Um so getting to be introduced to so many people who are, you know, who have the same goals, who are as passionate about it as I am and, and just sort of looking for the same things that I am and trying to find other ways to get people involved with it and just get people interested. When when I tell people and now that I've been advocating for it and you know, talking about it on my social media and my personal pages like I have friends that are reaching out to me. I have a girlfriend too. She had fibroids in her in her uterus, she had to have it removed. And she thought it was ovarian cancer and she was terrified about it. She was like, yeah, I went into my doctor and yelled at them until they actually ruled this out, because no one listened to me. And she was like, you know, it's the same thing, they wouldn't rule it out, they couldn't tell me what was going on. And until it it, you know, evolved like gotten to that stage that they figured out finally, what it was, she was terrified about it. And, you know, until you know, the symptoms until you know, what's going on. You know, it's, it's such a vague thing, and, you know, she had extended, like, a very, very bloated stomach because of it. And no one could really tell her what it was. And that was immediately the thing on her mind, because of what I was sort of, you know, raising awareness about. But it's just, it's so scary. It's nice knowing that I'm helping to, to inform other women that are out there. Because, you know, I had no idea what what the symptoms were. I had no idea what to be worried about, or look out for. And, you know, it's so vague that, you know, you can write it off. And that's, I think, I've gone through quite a few health issues myself, and I'm guilty of that as well, just being like, I'm sure it's gonna go away, it's going to be fine. It's nothing to be concerned about, it's a little bit of bloating, or it's a little bit of back pain, or whatever it is. And then it turns out to be something really serious that I should have sort of stood up for before. So it's, it's definitely made me feel, yeah, I would say just, I feel very fulfilled that I'm able to do that.

 

So Bianca, what's next for you in this journey?

 

Um, so I've decided that I'm actually going to take a vacation instead of doing a bike ride this next year. So 2021, so hopefully, the pandemic is over so I can go lie on a beach somewhere. But then 2022, I'm going to attempt to just become the fastest person to cycle across Canada. So I want to beat the guy's record as well.

 

So what what is that record?

 

So that is 13 days and six hours? I think. Okay, so I have to shave about a week off of my time. 

 

Wow. 

 

Yeah. So I think that, especially what we were doing near the later stages was was more of like micro naps, and sort of stopping during the day so I could take little naps, instead of really sleeping at night. So I think just starting that from the very beginning might be the way to go. And, you know, abusing caffeine and, and Redbull and hopefully I don't have a heart. But yeah, I'm hoping to do it pretty quickly next time. And so even just now, like, I'm still training and getting ready for it, I just thankfully have gotten to cut off most cardio, which is nice. I haven't done I haven't been on the bike since I finished, which is really exciting.

 

But yeah, it's just, you know, getting a lot stronger, and then starting to incorporate cycling again, probably in six months or so. That's that's sort of the plan and just hoping to help out and, you know, work with the BC Cancer Foundation and try to keep raising money in the meantime. And yeah. It's, but it feels, it feels like I could do that as like a full time job and still never sort of feel like I'm doing enough. You know, it's it's always sort of an uphill battle with anything like that. Just trying to figure out how to, you know, get something into the the narrative and the cultural lexicon, so that people are just, they just know about it, and they just talk about it, you know. I think it's, it's so pervasive that, you know, we, as women, like you know, how to check your breasts, like we know that we need to do that, you know, to look for lumps, but you know, for for cancer that kills so many women and and it's just so aggressive like it, it attacks so quickly, it's something that I think is so important to get it out there just so that more women are aware of what of what it is and that it is something that isn't getting you know, looked for. We think every sort of checkup that you go to any pap smear that you go to, you're assuming that that's sort of taken care of everything you sort of check off that box like you do when you go to the dentist or something. But it's you know, we also need to be our own advocates and you know, be very aware of what's going on in our bodies and you know, really speak up and be a little bit more aggressive when it comes to something that just isn't right. Because especially sort of connecting with other women who have been diagnosed with ovarian cancer on on like social media and Instagram. A lot of them have just said, you know, I knew something wasn't right. And you know, first visit someone doesn't really take you seriously, they tell you it's gonna go away, but it's, you know, that second or third when you get diagnosed, that you're like, Oh, fuck, you know, I should have been, I should have been more persuaded like I should have been more, you know, more insistent that something was done. And but especially if you don't know what to ask to look for, you know, you don't, I don't think it's, it's not well known enough yet for me to feel like enough people that I love are gonna know what to do and sort of have like a, this is what I need to ask for, this is what I need to make sure I'm ruling out. And, you know, if you think that you're doing everything already, and you're generally healthy, like, my sister was, you know, young and healthy and strong, and, you know, still, it was just over a year, it's, it's just, it was just crazy.

 

I think that the challenge too, is with anything in the pelvic region as a woman, it's, it could be assumed that it's, you know, related to your period, or.

 

 Yeah.

 

You know, it could just be something that's going to go away, or, you know, minor is like an ovarian cyst, just give it some time, it should burst because those are common types of things that are more, probably more than norm, especially in a younger population that, I don't know, you know, from my experience, just on the cervical cancer side, it was that same sort of like, nothing to worry about, like the pains probably just, you know, related to your period, or, you know, something else. And so, like, really understanding, especially with ovarian cancer, because I think at the time that the symptoms get bad enough that you know, the doctors are paying attention, then, you know, it's that critical point where, you know, now you've reached a, you're not early stages anymore, right? So as women, we really need to understand like, what are those signs and symptoms from a young age, and be watching for those just as much as you know, as we start to age in terms of like breast cancer. Like, you know, in your 30s, if you feel a lump in your breast, there's no way that you're not getting that looked at right away? 

 

Yeah. 

 

So why is it different when it hits our pelvic region? Because we get a monthly period, and we get cramps, and we get bloating, we get all kinds of things that are synonymous with like, ovarian cancer symptoms. It's just it shouldn't be that way.

 

Yeah, well, and I think that I mean, especially going through so so um back in 2017, before I started with the the guys that I work for now, I was diagnosed with Crohn's, and it was a month of just horrific pain and terrible, like, and leading up to it just feeling off. And going to the doctor and going like, I can't explain to you what it is, but I'm not right. Something isn't right. I've had like the, you know, I had these skin issues, I had a few other things that I was just like, I don't have any energy, like I'm a really healthy person, I take care of myself. And so I know, it's not just like, oh, I changed my diet, or I'm not sleeping enough, or I'm stressed. But that was sort of the little pat on the head that I got and then sent on my way. And it wasn't until I bled out so much that I passed out in my house that I finally got admitted to the to the hospital. And I had gone to the emergency room multiple times before, and they just, they just sort of go, oh, well, you know, it'll go away, it'll get better. And it wasn't until that that finally someone looked at me and took me seriously, it was like, I think you have Crohn's. And finally getting on drugs and you know, having everything taken, taken seriously. And then you know, having everything under control and just being like, I can see how this could happen for you know, all stages, you know, and any sort of health issue that you have, and, and especially with I think women's bodies, and you know, there's the Streisand effect as well, with, with some doctors, you know, they sort of look at woman and they you're hysterical, it's fine. And you know, finding the right caretaker and the right doctor and making sure that you demand a second opinion, if you're not happy with it. And just knowing that it's your right as a patient because I feel like you know, even like for myself going into things now now that i've you know, been through the wringer with so many specialists and other doctors and, you know, I developed a psoriatic arthritis as well, in conjunction with the Crohn's. And so it's just been, like, my family has had a whole bunch of health things for the last couple of years. And so knowing all of that now and knowing how to be a better advocate for myself is, you know, taking these notes and putting down the dates and going you know, it started three weeks ago on this date, and it hasn't gotten better. And, and really going in with more detailed notes. And, and that's honestly, that's my best sort of recommendations, when I do talk to people is like, take notes of it and put that in a calendar so that you can go, no, this has been going on for a month now, you need to listen to me, like I know myself, and I need this, like, unless you're ruling this out, I'm not leaving nice.

 

Right.

 

You know, you don't want to have to go in and really be really combative with the doctor. But sometimes it's just you know, even just for your own sake and your own mental health, you want to know that someone's someone's there and taking you seriously and listening to you. And I think that especially with with the way that you know, the internet is I think there's probably good and bad with that. But um, yeah, I think that having just more resources for people so that they feel like they're more informed and they're more connected with their actual health treatment is, is really huge. And I think that that's been something that that I've seen sort of more and more which is good is that doctors are a little they're more interested in like explaining what's going on to you now then then I think used to be the case.

 

Bianca and Nicole, I'm curious, from both your perspectives about, you know, you speak a lot about how patients can better advocate for themselves. But how would you maybe envision the medical system being, you know, what changes could the medical system provide in order to better support patients to become advocates for themselves?

 

I would say probably just having someone that's willing to sit down and actually discuss things with you. I think that too often, especially like an, you know, a family doctor is always so busy. You know, you you're waiting in a waiting room for almost an hour sometimes. And so, you know, you always understand and you sort of, I sort of always feel like, I'm taking up too much time, if I'm asking too many questions. But I think removing that and having a doctor who is willing to sit there and go, okay, why are you worried about this? Because, like, even for me, when I mean, my sister's ovarian cancer was tested, it was found that it wasn't genetic. And, you know, nobody took the time even, you know, she was still in palliative care at that point. And they insisted that she had that done just so they know whether they should be looking at me and my mom. No one really explained to us at that time that because she was my sister, that meant that I likely didn't have that the the gene as well, that it was very unlikely that I did. 

 

Right. 

 

And, you know, no one took the time to explain it to me, they just came back and said, oh, it's not a hereditary cancer. And, and so I just sort of let you know then I contacted BC Cancer, and I finally went like, can I please get that test? Because now, I'm freaking out. And you know, my grandmother had breast cancer and my sister died of ovarian cancer. Like, I feel like this is something I should be worried about. And it wasn't until the I think it was the nurse who does the scheduling for the hereditary cancer, called me and was like, no, no, no. Okay, I'm really sorry, no one told you about this, because your sisters wasn't, that means that you have a very, very tiny chance of actually having this like, just because of how the hereditary cancers would be, and just took the time to actually explain it. And I was like, oh, okay, thank you. That was all I needed. Because my family doctor just said, no, just flat out denied me. And so I eventually just felt like, I had to take things into my own hands or pay Lifelabs, whatever it is, it think it's like a $600 test to have it done. And I was just, I was starting to consider that because I was starting to get scared of every little time that I had bloating, and I mean, I have Crohn's, so I'm always bloated and uncomfortable and just going through stuff like that. And you’re just like I don't want to always walk around thinking that this might be cancer. So I would like to know that I don't have the the BRCA gene like because if I do, maybe I want to get everything just removed, and having to go there. And like, keep planning for the worst possible scenarios. When I could have just had a doctor sit down and go, this is why I'm saying it's not necessary. And taking it was a three minute conversation. 

 

Yeah. 

 

And it was so much easier than anything else, than to just have me walking around just going I don't understand why no one's paying attention to this. I'm so scared. 

 

Yeah. 

 

And yeah, it just, it calmed me down so much afterwards.

 

And I can't imagine the the mental health like aspect about that, you know, like, not not having to go around and figure it out yourself and ask and and then finally, you know, getting to the answer after probably several, you know, weeks or days of trying to search for that that answer, you know. 

 

Yeah. And I think just having a better, just a question. All it takes is okay, why do you think that you have this? or Why? Why would you like to have this test done? Just tell me why. And I'll explain why it's not as necessary as you might think it is. And, you know, even just having you know, I'm more than happy to listen to doctors, like doctors have saved my life, obviously. And have been, I've been very, very lucky with the care that I've received for for the issues that I have had. But you know, it does just take finding someone who's willing to sit down and talk to you and, and just explain things properly. Because I think too often it's, you know, you have that sort of that hierarchy, right? You have that doctor who's sitting there and just going I've got five minutes, what do you want? Tell me what's wrong, I'm going to give you a thing for it. And I'm not going to explain why it happened, where it came from, what you can do not to have this again. And I found that for for a whole bunch of things. It's just like, okay, yeah, I'm a little bit of a conversation and talking to me like an adult would be great.

 

Oh and when you have something else, book another appointment and come back because only get one, one per visit. 

 

Fuck, that’s the worst. 

 

Yeah. And that like, I definitely agree with you, Bianca. I just I don't know how we get there. And yeah, I think that's a whole shift in our medical system, the way it's set up. But I almost feel like too in terms of like when you look at say your situation with your sister, and I think of my mom had breast cancer and both of my great grandmother's on my maternal side had breast cancer, reoccurring breast cancer. So, you know, the whole, is this hereditary that has come up with my mom and I. And I, I and I've had this conversation with a few other people the idea as well, like a patient navigator, who knows the ins and outs of, you know, it certain types of cancer, if we're looking just at cancer, for example, certain types of cancer that is able to work with the family or the patient, and know the ins and outs of like, what tests do you need and why and who do we need to connect you with? And here's the resources that are available, whether they're within the agency that you're working with, or hospital or whether they're community based? And what can your family members do or what should they consider for themselves? So things aren't getting missed, because I think those of us who have been through different types of health scares, we get to a point where I think we realize we need to advocate for ourselves, but there's so many people who might be their first time entering the system, other than, you know, a regular checkup or a cold or, you know, that I don't know if everyone knows how to ask the questions feels comfortable about asking the questions. And then if we start to put language barriers or cultural barriers. So how do we have somebody who can work with patients and their families, to really make sure everything like we're crossing like all our T's and dotting all our I’s to make sure we're providing the type of care and making sure everybody feels safe and comfortable, and has been provided what they need?

 

Yeah, and I feel like that also happens, especially like, it seems to happen a lot more at like, the secondary care level, when you're already with a specialist, and you've gotten that referral, and you're talking to somebody who's, who has a little bit more time to sit down and discuss things with you. But I see, I've always felt it the most in like the family doctor setting where you're going, you're my primary care provider, like, you're supposed to know my family history, and I'm supposed to be coming to you regularly or, you know, whenever things are going on. And just so that you see sort of the timeline of things, and you know, you know, my sister had ovarian cancer or something, you know, there's a history of this cancer in my family, so that that's going to trigger something in your brain. But if, but I find that even there, I think that that's maybe where that whole sort of connection needs to really start. But I don't know how that would happen. Because, you know, the primary care providers, the reason that everything gets it, that's where things would slip through the cracks is because they're already so overwhelmed, and, you know, less not not paid as high as specialists. And that's why you don't have as many people going into that field. So I just don't know where that not to be a complete downer, but it's just so hard to see where we would be able to make that make that available to people because you would almost need someone just sitting in the doctor's office with them all the time. Because I feel like it's that primary care person that you're going to when you're like, hey, something doesn't seem right. And I, because you're not going to go in and see an oncologist right to start with, you're not generally going to go straight to see a gynecologist or someone who is a little bit more specialized in that you're going to go see a primary care. And yeah, if they're already so busy and so tired, and is them being so exhausted, because of how many patients they're fitting into a day, is that sacrificing, you know, the level of care that you're receiving, because if they're the ones that are there to connect those dots, and then make those connections to the secondary care providers, and you know, the specialists that you need to go see, in order to follow up on things, then, if that's where it's falling through the cracks, then it's just I don't know whether that's someone that like a patient would have to call in. But then at that point, then we have to make sure that patients know that that's an avenue for them. But it's, ya no, it just seems like it's such a daunting task and something that I've been thinking about of how to best get people to be more aware of it. And you know, almost thinking of it as a patient by patient sort of thing. And that's where I see sort of, as much as doctors hate you going in with a list of things that you think you might have, or just the basic of like, I this is my family history, this is why I think I might have this almost like a challenge, like rule this out for me now. Because if I feel like sometimes not going in with things and not having something to say to your doctor, and it doesn't always get taken seriously, but you know, finding that middle ground of having someone there that that is a bit more specialized and can sort of advocate for you and ask more questions and, and sort of push for more testing or explain things to you a little bit better. And then to the other side of going in with print offs and you know, notes of your own or something like that, I think have something that we have now is social media and trying to explain that a little bit more to people and and trying to have more people speaking up about like, okay, this is what I went through. And this is what I should have done. Because even from being hospitalized, like you have, you know, your doctors doing rounds, and they're coming in, and if you forget to ask, you don't see them for another 24 hours. And you're sitting there, you're going shit, I should’ve asked them this. I don’t know what's gonna happen tomorrow, and now I need to wait. But having someone there and having someone that's available to help you with that, like I don't having something in the middle that's almost maybe like an AI assistant, you know, that you can go okay, these are the things I need to mention to my doctors, and and then you go in, and you can have them sort of listening in and going oh, hey, you, you know, you need to mention this as well. Oh, right. Okay. 

Yeah.

 

You know, maybe using technology to sort of bridge that, because that might be like the least expensive once it's, I don't know. But yeah, I know, it's something that I've thought about a lot too.

 

Well, I'm thinking of primary care as well expecting them to be experts in everything.

 

Right.

 

I think is just an unlikely, unrealistic ask so, you know, is there something like, if we look at technology and AI, or that might be a way to kind of bridge that? I don't want to call it a knowledge gap because it's, you know, there's they, they're required to know a little bit about absolutely everything. And so, you know just to have some more like.

 

It’s more like a systemic gap.

 

Yeah, yeah. 

 

And as we see, like, you know, family practice isn't what it used to be. Like, I remember, as a kid, you went to the same doctor who had his full practice, and it was a completely different scenario than me booking an appointment at the clinic that takes patients, but I don't really feel the same family practice type thing, when I go in there. And I often get a different doctor than the doctor that I booked with, because for a variety of different reasons. So you know, what people that used to be with us from the time we were born, and watch us grow up and our whole family goes to that just doesn't exist anymore. So.

 

Yeah,

 

Yeah, that's a challenge for sure. 

 

Yeah, I think that there's definitely, I don't know how to say this without being rude. Um, I have had a lot of friends. I have a girlfriend who was recently diagnosed with PCOS. And, you know, she had a lot of issues, going to some, her original primary care provider and found a new doctor who sat down with her for an hour and talked to her about it, and, and just sort of gave her okay, you know, I'm also, so she is, her family's Middle Eastern. And so she had a doctor who was also from the Middle East, who went, you know what, this is actually really common in women from our culture, like, this is what you can do, here's the diet change that I've done, and actually sat down with her for an extended period of time and fully explained to her what she needed to be doing. And she had been struggling with PCOS and hospitalized multiple times for years before that. And just no one had thought to just other than, say, lose weight, no one had actually taken the time to explain anything to her and say, you know, maybe you should go see this, you know, a naturopath to help with, like getting these blood things done. And maybe you should go see a dietitian or nutritionist, they just sort of told her to lose weight, and then close the door on her. So I think that there's, you know, and the doctor that she went to was also a lot younger as well. So, you know, maybe it's also just a different mindset of new doctors coming in. And, and hopefully, that's something that's that is changing, because, at least with a few friends who have recently had some health issues, and who have sort of found, you know, younger doctors that are taking on new patients. It seems like things are different, at least from from what they're, they've sort of been telling me. So that's, it's also a positive.

 

Definitely. So we have one last question for you. And if there was one message that you wanted to get out to the world about ovarian cancer and your work, what would that message be?

 

Just that as scary as the numbers are, and I think that I mentioned this to Stephanie, during our first conversation is like, there's only so many times that you can share the numbers and the statistics without one, starting to feel pretty shitty yourself and two, just feeling like you're not sending out a very positive message to other people about there actually being, you know, a lot of hope for, for what's to come. I think that it's just you know, there's a lot of hope there's, there's a lot of people who are, who are working so hard on this and who just need a little bit more funding and then you know, that funding just needs to come from from people who are really passionate about it. Going out there and you know, doing things and raising the awareness for it, but it's coming. And, you know, I think that just focusing, I know that it's something that I want to try and do is focus more on on how much has been accomplished because you know, you can talk about the negatives all the time, but the fact is, you know, there's, there's so much that can be researched now. Like it is going to be a better future for women who will be diagnosed. That's like, there's no ifs or ands about it. Like they're, you know, there's this, there's a dedicated, passionate group of people who, who are working hard on this, who care about it. And I think that, especially for women who have gone through it, who feel like it's sort of, you know, it's not the cancer that used to be talked about all the time. You don't see it on food packaging and, and supported everywhere. But that doesn't mean that there isn't, you know, a very impassioned group of people who is working really hard on it. And I think that, you know, especially with, you know, the grants from the Government of Canada and the different provinces, you see that this is sort of the, you know, we're getting there. The momentum is coming, like, there's hope. And I think that that's the most important message is just, you know, it's, we're not there yet. And, obviously, we always wish, like, I wish that I could turn back the clock, I wish that we could have done this, I wish that I was doing this 20 years ago, I wish I knew about this earlier, but it's, you know, we are where we are right now. And I think that it's only going to get better. I think that especially knowing David Huntsman and meeting everybody else, and seeing that there are so many people that are very passionate about raising incredible amounts of money for this, to get directed for this incredible research, it's, you know, it's only going to, you know, get better.

 

 

I think it’s also, you know like, I always look to patients and family partners like yourself, who are really, you know, making moves in this area as well. Raising awareness, advocacy, which is all part of this really important circle of making change in this area. You know, its not just the research, its also raising awareness, bringing this to the attention of the public. Because like you said before you know, its about letting people know that this is something that could be experienced by people, and here are the symptoms, here is what you might want to look at. And that is also, you know, incredibly important in the present, and also in the future. You know, as we are developing new technologies and new treatments and stuff, without the proper translation and the means to be able to put this out into the public. It’s not, its never going to be as useful, you know, if they weren’t people out there like yourself who are out there actively using their voices to, you know, bring up these issues to the public and to important stakeholders. 

 

I think that, you know, the more that that all of this gets disseminated online, the more that people are talking about it, the more you just, even just hear about it in passing, and then you can ask the follow up question. Because that’s so much of my experience has been, is just, you know, first they ask a question about the bike ride. And then I go now that I have your attention, I’m doing this for ovarian cancer and then sort of getting to change that, flip that really quickly and get people interested. Is just sort of, you know, the shiny thing that I get to wave over here, and then go hey, okay, look at this. You know, there’s a lot of opportunity for that, you know. Its harder, especially right now, but you know coming out of lockdowns, coming out of hopefully the pandemic in the future, there’s gonna be, you know, more and more opportunities to really do more, especially community events and things that really bring people together and help to just raise that awareness and get it to be something that you talk as often as as people talk about breast cancer. 

 

Yeah definitely. Okay. 

 

Well thank you so much Bianca. That was, that was great. 

 

Thank you so much for having me. 

 

I’m excited to see the work that you continue to do in this space.

 

Thank you. 

 

Well, you know, we should definitely stay connected Bianca and we are going to stay connected with your work and all of your future rides as you become the fastest person to ride across Canada in, two years time you said?

 

Two years yeah. 2022.

 

Okay. 

 

After a much needed a cycling vacation. 

 

Rest. Yes. Rest your body. Thanks so much for coming on and we’ll stay connected in the future. 

 

I’d love that. Thanks so much. 

 

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.