Season 3 Episode 9: OCC Series - Building Community and Empowering Patients: Patient Initiatives and Resources

Join us for the final episode of our collaborative series with Ovarian Cancer Canada (OCC), where we delve into the incredible work being done to support ovarian cancer patients across Canada. In this episode, we're honored to have Stephanie, a program director at OCC, and Starla, a patient partner, as our special guests. 

Starla shares her personal experience as an ovarian cancer patient and reveals how she utilizes social media to document her cancer journey and foster connections with fellow patients. Her story is one of strength, resilience, and the power of community. 

Stephanie, the program director at OCC, sheds light on the range of resources and initiatives available to support ovarian cancer patients. From awareness campaigns to tailored programs, Stephanie provides valuable insights into the diverse ways OCC is making a difference in the lives of those affected by ovarian cancer. 

Bio:  

Stephanie Gosselin 

Stephanie Gosselin is the Programs Director at Ovarian Cancer Canada. She has a passion for building community and supporting those diagnosed with ovarian cancer, ensuring that no one is alone on this journey. Stephanie is committed to making sure that everyone in the ovarian cancer community has access to the most up to date and accurate information through a wide variety of education and support programs. She is proud to call Shellbrook, SK her home, where she lives on a farm with her husband and three kids. In her spare time you will find her running the trails of northern SK. 

Starla Fiddler 

Starla Fiddler was diagnosed with a rare form of ovarian cancer at age 23. Since being diagnosed, Starla has faced multiple recurrences and rounds of treatments. She is a strong advocate for ovarian cancer awareness by making connections through social media engagements, speaking at events, and doing media interviews. She is from Saskatoon Saskatchewan where she shares her life and makes memories with her 5-year-old son. 

Ovarian Cancer Canada (OCC) Website - https://ovariancanada.org/ 

OCC Patient Resources - https://ovariancanada.org/creating-connections

OVdialogue - https://ovdialogue.ovariancanada.org/

Teal Tea - https://ovariancanada.org/events/teal-tea-for-everyone-diagnosed-with-ovarian-cancer

OCC email: 

info@ovariancanada.org 

Follow OCC on social media: 

https://www.instagram.com/ovariancancercanada/  

https://twitter.com/OvarianCanada 

https://www.facebook.com/OvarianCancerCanada/  

https://www.youtube.com/user/OvarianCancerCanada 

https://www.linkedin.com/company/ovarian-cancer-canada/  

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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 

Transcript

SPEAKERS  

Stephanie Lam, Stephanie Gosselin and Starla Fiddler 

SUMMARY KEYWORDS  

Ovarian Cancer Research, Gynecological cancers, Patient-oriented research, Advocacy, Oncology, Ovarian Cancer Canada, Resources for Researchers, GOSH podcast  

Intro: 

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 traditional unceded 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 a 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. 

00:00:01 Stephanie Lam 

OK, welcome back to another episode of the GOSH Podcast. Today we're very excited to be joined by Stephanie and Starla, both from Ovarian Cancer Canada. Today we're completing the three-part series collaboration that we're doing with OCC and today we're going to be talking about patient related initiatives and resources for patients that have been founded and sustained by ovarian Cancer Canada.  

So just to introduce our guest today, Stephanie is the program director at Ovarian Cancer Canada. She has a passion for building community and supporting those who are diagnosed with ovarian cancer, ensuring that no one is alone on this journey. Stephanie is committed to making sure that everyone in the ovarian cancer community has access to the most up-to-date and accurate information through a wide variety of education and support programs. She is proud to call Shellbrook Saskatchewan her home where she lived in a farm with her husband and three kids. In her spare time you'll find her running the trails of northern Saskatchewan.  

We're also joined by Starla today. So, Starla was diagnosed with a rare form of ovarian cancer at age 23. Since being diagnosed Starla has faced multiple recurrences and rounds of treatment. She is a strong advocate for ovarian cancer awareness by making connections through social media engagement, speaking events and also doing media interviews. She's from Saskatoon, SK, where she shares her life and makes memories with her five-year-old son.  

Ok. Well, welcome both of you to the podcast. Thank you so much for joining us today. 

00:02:35 Starla 

Thank you for having us. 

00:02:36 Stephanie Gosselin 

Thank you for having us. 

00:02:39 Stephanie Lam 

So well, let's just jump right into it. So, Stephanie, why don't you start off and just by sharing a little bit about kind of how you became interested in ovarian Cancer Canada and how you've become involved with this organization? 

00:02:56 Stephanie Gosselin 

Ok, so in all honesty I didn't know a whole lot about ovarian cancer before I started working here. That was about nine years ago, so I've been with OCC just past nine years. One of my best friend’s moms had died of ovarian cancer and really that was the only connection that I'd had with the disease. I was at a place in my life where my kids were all back to school and I was looking for a career change where really I could give back and do something a little bit more meaningful and with ovarian Cancer Canada this opportunity came up and I took it and I will say I got that and so much more. It's just been such a fulfilling place for me to work. I get to work with amazing and strong women like Starla every day. 

00:03:49 Stephanie Lam 

I think sometimes we find ourselves in new places unexpectedly. Um, would you be able to share a little bit more about your role as national programs director at OCC? 

00:04:04 Stephanie Gosselin 

Yeah, I thought about this question and it's really hard to sum up in one sentence kind of what that does. But I think overall, providing education and support to women and their families that are affected by ovarian cancer. But I think one of the most important parts of that is creating a community. As with any cancer diagnosis, it's really overwhelming I think in particular with ovarian cancer, it's still a relatively rare disease and only 1.4% of the general population will get it. So you may be diagnosed with it and not know anyone else who's ever had it and feel very alone. So I think one of the important things that we do is to create safe spaces for women and their family members and caregivers to connect. So offering them opportunities to meet other people with the same diagnosis and learn from one another. And really just being able to support one another. We know that there is a lot of information out there and lots of people have read to doctor Google and we at Ovarian Cancer Canada really pride ourselves on being the place for people to go to find the most up-to-date and accurate information in order to help them make the best decisions about their care and their treatment. 

00:05:31 Stephanie Lam 

Yeah, that's so important, I think. You mentioning kind of community and having connections and just kind of reaching out to folks who have gone through similar things has definitely been a theme that we've kind of heard a lot from all of the patient guests that we've interviewed on this podcast and yeah, community is really important when going through something like ovarian cancer diagnosis. 

00:06:03 Stephanie Gosselin 

I don't live with ovarian cancer. I don't have lived experience and I can provide excellent support, but I think there's nothing quite the same as being able to speak with someone who's been on the same journey with you and understands exactly what you're going through. 

00:06:17 Stephanie Lam 

That's so true. And I think, you know, Ovarian Cancer Canada has done a great job of kind of providing those platforms and all across Canada. And you know, I've always spoken with patients here in BC who have reached out through OCC and has found so much value. In doing so. So I think it's such an important platform for women going through this diagnosis. 

Starla, I think turning to yourself, I'm wondering if you could share a little bit about yourself and your cancer journey. And how you became connected to Ovarian Cancer Canada? 
 

00:06:59 Starla 

So I was diagnosed with a rare form of ovarian cancer when I was 23. And at the time of my diagnosis, I was probably the healthiest that I've ever been in in my life. Exercising every day, participating in yoga like I was just eating clean and everything. So to have this diagnosis at that age, it was really surprising to me and it really kind of shocked my family as well. 

For me, the only symptom that I had of ovarian cancer at that time was that I hadn't had a period in over a year, and just with each month and not having my period as like time went by, I realized that there was probably something wrong and, sure enough, they ended up finding a cyst on my ovary and that ended up becoming cancer. I'm currently on my 5th reoccurrence. My type of cancer, it will never go away. It's going to continue to come back I guess until it just gets more and more aggressive. 

So I got involved with Ovarian Cancer Canada because I really thought it was important to share my story. A lot of people don't realize that ovarian cancer can happen to young people as well, and often when I tell people that I have ovarian cancer, like the response I get is that older aunt had it, their grandma had it. And so I just really wanted to get my story out there just to let people know that, you know, it is a disease that doesn't discriminate on age. 

00:08:51 Stephanie Lam 

Thank you so much for sharing your story! I think you're really right. And I think that having these patients stories and getting the message out there and the advocacy work that you've been able to do through OCC is incredibly important and just kind of allows folks to have conversations about this disease. So thank you so much for sharing your story and for the work that you've been doing with OCC. 

I'm very curious if you can also share a little bit more about kind of what sort of work and advocacy you've been able to do with ovarian Cancer Canada since being involved. 

00:09:34 Starla 

I have been on the Walk of Hope Committee for a number of years. I'm a volunteer for that. Recently I've really took to social media to share my story and to raise awareness about ovarian cancer. 

I talk about the symptoms and things like come along with me for a CT scan. And things like that. I just like to do just I guess educate and teach people that way. I've been a part of quite a few symposiums where I've been able to share my story as well and I've really enjoyed doing that. And then Stephanie and I actually did survivors teaching students where we talked to second year Med students just to be able to put a face to the disease and talk about the symptoms and things like that. So I really enjoyed doing that one. 

00:10:30 Stephanie Lam 

That's great. I love the focus on kind of early education of medical students. I think oftentimes we see these sorts of programs for postgraduate medical students. You know, we've been continuing medical education after people are now practicing, but it's really nice to kind of hear, UM, the advocacy work and you've been doing kind of early on and just kind of raising awareness of this disease with young learners so that they can be aware of it as well. 

00:11:07 Starla 

Yeah, I think that one of the quotes that I like to use when I am sharing my story is that “ovarian cancer doesn't have a face until you know somebody, right”. So I like to put my face to the disease and so I think that helps. 

00:11:23 Stephanie Lam 

No, that's amazing. I'm very curious also about the work that you've been doing on social media. I think you know we've over the last couple of years, you know so many different platforms have been just kind of booming and it's been such a such a great way to share messages and everything. 

How have you navigated sharing your story on social media? Have what sort of reception have you been able to receive by using those sorts of platforms? 

00:11:57 Starla 

Yeah. So in 2016 is when I held my first really big reoccurrence. And so at that time, Instagram was the platform that was the most popular. So I really started. I literally started from the day one of my date that I had the reoccurrence and then I would post just about everyday kind of what I was going through. Like waiting for the CT scan, booking the scan what the scan was like. So I used that platform for quite a while and I connected with a lot of women with ovarian cancer that were on the same journey as myself and people that were on newly diagnosed as well as people that had already finished treatment and were kind of rallying and cheering us on that way from this recently.  Though at the beginning of the pandemic, everybody was talking about TikTok and I thought I was too old for the app. I finally got on there and started scrolling and I thought, you know, this could be a way for me to share my story, and the symptoms and all of that out there. 

And so I remember one of the first videos that I posted that really got a lot of views. It was myself discussing my symptoms that I was currently experiencing and that video, it really just skyrocketed like overnight. The views just kept climbing and so that was my sign that I needed to continue to do these types of videos and to advocate and share my story and share what life is like with a 5 year old as a single parent and trying to like navigate like how do you tell your five-year-old that his mom is not coming home. That are true, and they're very real and that a lot of a lot of patients are dealing with that and trying to navigate that as well. 

And so that's really kind of where that TikTok had started and I just wanted so badly to. When I was first diagnosed I didn't see my face in anybody like I wanted somebody that was my age, that knew what I was going through. And at the Cancer Center everybody was significantly older than me and I've never more alone trying to navigate this  disease. If somebody can see me in my mid 30s and realize that, you know, she is going through this and she's currently doing it and maybe that would be inspiration or even motivation for someone to keep fighting. 

00:14:46 Stephanie Lam 

Ohh, I love that. 

00:14:47 Stephanie Gosselin 

Stephanie, I was just going to jump in and say that we talked a little bit about building community before and start has been instrumental in building community among the young survivors and she's just such an inspiration. 

00:15:02 Stephanie Lam 

I was just gonna say I think it really goes back down to that community building. And I'm finding connection among folks who are going through a similar story and journey. 

So it's amazing to hear, you know, you branching out to different platforms and, you know, reaching even potentially a younger audience who would really benefit from hearing these messages and the advocacy that you're doing. Yeah, I absolutely love the work that you've been doing it. We'll definitely share the links to your social media, if that's OK with you, in our in our show notes and everything, so folks can reach out and be part of that community, that online community that you're building. 

00:15:41 Starla 

Yeah, of course. 

00:15:51 Stephanie Lam 

Yeah, what you speak about really points us to exploring more about the different programs that are ongoing at OCC. So maybe Stephanie, I'll start with you first. If you can share a little bit about the different programs that are that OC has been supporting and running over the few years, the many years that these programs have been running. 

00:16:23 Stephanie Gosselin 

Yeah, for sure, Stephanie. I think one thing too that we try to do is we try to offer, we know that people learn in different ways and people connect in different ways. So we try to offer a variety of different support platforms for people. So we'll just talk about a few, tell you about a couple of those here. 

On a monthly basis, we host a Teal Tea. It's a virtual online gathering. It is not professionally facilitated. It's pure lead, and women from across the country. On just really it's a safe space to connect to share their story, to ask advice and to provide support for other people. 

So we also do that for young women. We have a young women's Teal Tea as well as Starla mentioned. I mean, you're facing different challenges and going through different things as a young woman with this disease. So really, giving those women a space as well to share and to connect. 

We also just recently started professionally facilitated support group so we have that once a month.We also have a group that's a six weeklong group.There's a different topic that's explored every week. So again, that's professionally led. If you're looking for something like that. If you want more, one-on-one support. 

We also have a peer-to-peer support program, so we have volunteers who are trained, they have lived experience with ovarian cancer and they volunteer to be supports to women who are newly diagnosed or facing recurrence or just finding that they need to talk to somebody one on. 

Another unique platform that we have, again it's called OVdialogue and it is an online platform. Basically, it's a discussion board that you can go on regardless of where you live in Canada and no matter what time of day it is, you can go on and you can ask questions and you can look for advice. If you can provide support to other people who are on there as well, so we really do try to hit a number of different ways that people can find the best support that they need. 

00:18:42 Stephanie Lam 

I love that. I think it's it really kind of caters to the full, the fulsome wide variety and diversity of patients who might need different things in different times of their journey. So it's amazing that they're able to access all of these different things. Can you just remind folks, are these resources accessible to patients across Canada? 

00:19:11 Stephanie Gosselin 

I think that's one of the Silver Linings of COVID is a lot of our programming went virtual and went online. So anywhere across Canada can access this information at our website ovariancanada.org. So, all of the information is there and you can register and sign. 

00:19:32 Stephanie Lam 

And we'll definitely put that website link in our show notes so listeners can access that as well. 

I'm curious from your perspective as a patient and as a patient partner working with OCC, what sort of impact have you've kind of experienced with these sorts of programs? 

00:19:54 Starla 

I have such a sense of I don't know if accomplishment would be the word.  But it's always been my goal to advocate but being able to be a partner for a patient partner in research it's important to me, because I know that I'll never see like a screening tool for ovarian to answer, for example. By being a patient partner in research, it helps me feel like maybe I'm helping with that I guess. So we provide insight and advice from a patient's perspective, which I think is very important. And then we also engage in research projects and then serve on review panels and getting to know the other women on the team as well is has been really nice. 

00:20:50 Stephanie Lam 

That's amazing. Yeah, and our previous episode of this series speaks a little bit more about this particular program and how important it is from the research perspective to get patient insights into the research process as well. So definitely check that out if you haven't already. 

OK. Just to wrap up the podcast now, I just had one last question and we try to ask this to all of our guests. It's just an invitation to ask the both of you if you had one message that you could share with an ovarian cancer patient or an ovarian cancer survivor, what would that message be? Maybe Stephanie, I'll start with you first and then we can go to Starla. 

00:21:42 Stephanie Gosselin  

I think the one message that we've kind of talked about a lot throughout this podcast is you're not alone and there's a, a great big community of people here who are willing to support you and help provide you with the best and the most up to date information and a whole bunch of different resources. And you're not alone, and that there's an organization out who is here for you. 

00:22:08 Stephanie Lam 

So I'll turn to you now. 

00:22:12 Starla 

Yeah, I think that the one thing I always say is that I would like people to know that Pap smear does not detect ovarian cancer. So I think that's one of the most... What's the word I'm looking for? 

00:22:31 Stephanie Lam 

And it's a big myth. 

00:22:34 Starla 

Yeah, it's just that. People think that like a lot of people feel that they have their pap smear and like my friends included, when we're talking about ovarian cancer, they said, well, I had my pap screen. But no, like your PAP screen is not testing for ovarian cancer. 

And so that's one of the things that I would really like others to know, but if I was talking to somebody that was newly diagnosed or somebody that was going through this right now, I would tell them that you know it is going to be hard and you're going to have to fight, but the fight is going to be worth it. 

00:23:09 Stephanie Lam 

Thank you for sharing both of those messages, I think they're both really important and such an important message to the general public, but also to patients that are going through this disease right now. 

OK, well, thank you both so much for coming on to the GOSH podcast and for sharing the work that you both do and for sharing your story. The resources that were mentioned in today's episode will be put into the show notes so folks can access that and reach out to Ovarian Cancer Canada to access these different types of resources as well as the wealth of information that's provided by this organization. 

And again, thank you both so much for joining us today. And thank you for the work that you both do for Ovarian Cancer Canada and for patients that are going through this. 

00:24:04 Stephanie Gosselin 

Thank you so much, Stephanie, for calling us. 

Outro: 

Thanks for joining us on the GOSH podcast! To learn more about the Gynaecologic Cancer Initiative and our podcast, make sure to check out our website at gynecancerinitiative.ca.