Season 4 Episode 5: eSense-Cancer: Revolutionizing Approach to Sexual Wellness in Gynecologic Cancer Survivors

Welcome to the first episode of the new year! 

Meet Geneviève Allaire-Stacey, Researcher behind eSense-Cancer 🌱👩‍🔬 Delve into the insightful work of Geneviève, focusing on adapting therapy modules in sexual health for gynecologic cancer survivors. Her commitment to nuanced, patient-centric research is at the heart of eSense-Cancer

Geneviève Allaire-Stacey is currently doing her Master's of Science in Women+ and Children’s Health Sciences under the supervision of Dr. Lori Brotto. In 2022, she graduated from McGill University after completing her Bachelor of Arts as a double major in Psychology and Gender, Sexuality, Feminist and Social Justice Studies as well as a minor in Behavioural Science. Through her studies at McGill, Geneviève developed a marked interest for women, sexuality, and health, and it is with the goal of having a direct impact on women’s health that she applied for the WACH program. Genevieve’s focus at UBC and in the Sexual Health Research Laboratory is centered on treatments for sexual dysfunction in cancer survivors. Specifically, she works on eSense-Cancer, a branch of the eSense study, which seeks to adapt the original digital therapy modules to gynecologic cancer survivors’ lived experiences with female sexual dysfunction. Geneviève hopes to continue onwards doing work related to sexual health and advocacy once she is done her master’s degree.  
 

Geneviève’s presentation won Barbara Berthon Ovarian Cancer Presentation Award at the annual GCI Trainee Research Day conference.

Sexual Health Lab at UBC 

https://brottolab.med.ubc.ca/ 

https://brottolab.med.ubc.ca/genevieve-allaire-stacey/   

eSense Cancer 

https://brottolab.med.ubc.ca/studies/esense-cancer/ 
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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 

Geneviève Allaire-Stacey, Stephanie Lam 

SUMMARY KEYWORDS   

Sexual Health, Cancer survivorship, Gynecological cancers, 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. 

00:00:22 Stephanie 

So welcome back to the GOSH podcast. Today we have a very exciting guest joining us today. Today we have Geneviève Allaire-Stacey, welcome to the podcast. 

00:00:41 Genevieve 

Hi, thanks for having me. 

00:00:43 Stephanie 

Great. Thank you for joining. 

So, let me introduce, Geneviève Allaire-Stacey is currently doing her Master's of Science in Women+ and Children’s Health Sciences under the supervision of Dr. Lori Brotto. In 2022, she graduated from McGill University after completing her Bachelor of Arts as a double major in Psychology and Gender, Sexuality, Feminist and Social Justice Studies as well as a minor in Behavioral Science. Through her studies at McGill, Geneviève developed a marked interest for women sexuality, and health, and it is with the goal of having a direct impact on women’s health that she applied for the WACH program. Geneviève’s focus at UBC and in the Sexual Health Research Laboratory is centered on treatments for sexual dysfunction in cancer survivors. Specifically, she works on Essence-Cancer, a branch of the essence study, which seeks to adapt the original digital therapy modules to gynecologic cancer survivors’ lived experiences with female sexual dysfunction. Geneviève hopes to continue onwards doing work related to sexual health and advocacy when she has done her master’s degree. 

So, thank you so much for joining us on the podcast today. Can you start off just by telling us a little bit more about yourself? 

00:02:03 Genevieve 

Hi, yes. Well, you did a wonderful job at summarizing my background and how I got to where I am today. Essentially, I've always had a passion for Women's Health research and long had a goal of being able to offer health care to women. At first, my objective was to become a gynecologist, which is why I originally pursued an undergraduate degree and psychology and GSFS, you're right. That is a mouthful. I believe that possessing a background in these fields would provide a critical foundation as a physician. Then, however, my time studying these domains really exposed me to this area of health research, which is how I found myself looking at the interdisciplinary watch program at UBC. So, to make a long story short, I met with Lori Brotto, my supervisor, and she's the one who suggested the project that I'm working on right now, and this is how I started my graduate studies with a focus in psychosocial oncology. Now, outside of academia, you can find me at a bar class or Pilates class, or spending quality time with my friends and family often around the table with a dinner I've spent all day cooking and a nice bottle of wine or serve one tea. I also adore playing with my 2 cats, Chai and Pomelo, as well as knitting and reading. 

00:03:20 Stephanie 

Ohh, I love that. That's great. So, I guess you just recently came to Vancouver for this WACH program, right? 

00:03:31 Genevieve 

Yes, I moved in June of 2022 right after I graduated from McGill and settled in Vancouver to start my program in September of 2022. So, I've been here just over a year. 

00:03:43 Stephanie 

A year. That's great. And how are you liking Vancouver so far? 

00:03:48 Genevieve 

It's a great city, it's very different from Montreal, where I was before, but I really enjoy the outdoor activities that it offers, the skiing is unparalleled. 

00:04:05 Stephanie 

Yes, yes, that is true. Yes, the and I think we've also been having really nice summer is here as well, so it's nice to, you know, go on hikes and just enjoy the outdoors as well. Well, it's so nice out, I think it's currently really, really sunny out outside, even though it's like October when we're recording this, right? 

00:04:23 Genevieve 

Indeed, indeed. I went out and I was it was warm. It was very pleasant. 

00:04:27 Stephanie 

Yeah. Yeah. OK. So, you've alluded to this a little bit more, but I would love to hear more about kind of how you became interested in Women's Health research and what that journey was like for you. 

00:04:41 Genevieve 

Yeah, it's an interesting story and I feel like I have to give credit to the first thing that truly sparked my interest in the matter and got me thinking about this career path, and that was the TV show “The Mindy Project”. Yeah, it sounds silly, but I watched it in a very formative years of my life. I was about to graduate from high school, and I was questioning what I wanted to do in my life and seeing the characters work in Women's Health got me thinking about it. My curiosity led me to research the field of obstetrics and gynecology, and this is how that goal was founded. And that said, the merging of the two areas I studied in undergrad was really unique. I knew of only one other person double majoring in psychology and gender studies, and this extremely tailored interest of mine led me down this path, which I'm so grateful for. Like many other younger grads, I was figuring out what I wanted to pursue once I graduated, I had strong organizational and project management skills as well as strong competence in writing and an especially large in like sense of curiosity. So, I went ahead and decided on research. It also helped that I really wanted to do something that was meaningful, which had a direct impact on Women's Health. So, this is the work that I'm doing. It’s truly a passion of mine. 

00:06:04 Stephanie 

Mm-hmm. That's amazing. That's great to hear. I love that a TV show kind of sparked your interest and kind of sent you on this tailwind of, you know, discovery and you know, moving into this space, I think it just speaks to kind of how important you know representation and media is in our stem field, right? 

00:06:26 Genevieve 

Yeah, I don't have like healthcare professionals or at least not OBGYNs in my family. So, I wasn't exposed to it in any other way. So yeah, it was the TV show. 

00:06:37 Stephanie 

Yeah, yeah, I love that. OK. So, can you tell us a little bit about your research work? Obviously, the GOSH podcast. Many of our listeners may be gynecologic cancer survivors or patients, so we'd love to hear a little bit more about what you're doing for your master’s degree right now. 

00:06:57 Genevieve 

Of course. So, the project I'm working on is called essence cancer to give a little bit of background essence is an online program delivering cognitive behavioral therapy, or CBT for short and mindfulness-based therapy to treat sexual interest and arousal disorder in women. This was developed by my supervisor, and our Co investigator, Dr. Kyle Stephenson from Xavier University, and it seeks to fill a gap in sexual healthcare. So, sex therapy is often costly, and therapists are generally located in urban centers. And additionally, the reality is that there's still a lot of stigma and taboo surrounding sex, and people can be reluctant to seek help for their sexual problems because of that. So, the team at the sexual Health Research Lab wanted to offer an alternative therapy, which would lower some of these barriers of access. With that in mind, when we looked at gynecologic cancer survivors and their needs regarding sexual health. We not only saw that this group of people is at a disproportionate risk for sexual difficulties following treatments. But they too face the same barriers and more. So, the long-term effects and demands of treatment also impact survivors’ ability to go to therapy. For example, chemotherapy can leave individuals with brain fog, fatigue and other physical limitations which make going into in person therapy difficult. Having a program that they can do in the comfort of their own homes at their own pace can be highly beneficial to their sexual well-being. So, with that said, we decided to adapt essence and create essence cancer, tailoring it to the experience of survivors who are left with sexual difficulties due to treatment. Once that's done, we'll also be evaluating it first through a small feasibility study, but then hopefully in a larger randomized control trial. 

00:08:50 Stephanie 

That's amazing. I think you're so right when you're talking about the way that gynecologic cancer survivors experience their survivorship journey, I think we on the podcast have explored a lot about kind of that phase of the cancer journey and the numerous challenges that come with it, I'm curious kind of how are you and folks on the team going about adapting the models to fit gynecologic cancer patients needs and everything? 

00:09:22 Genevieve 

Yeah. Well, we originally gathered a group of patient partners who had, you know, experienced a gynecologic cancer and had experiences with sexual concerns afterwards. And they reviewed all the modules in East Sense. They gave written feedback while they were working through the modules. And then we also held group discussions to kind of go deeper into the feedback they gave, give more nuance and kind of have thoughts bounce off from one partner to another. So, that I could gain that insight that they have and implement those changes or those recommendations in essence and create essence cancer. So, I'm at that point now where I'm taking all their feedback and I'm making concrete changes to the program to be better representative of their experience. 

00:10:24 Stephanie 

Oh, that's amazing and when you've been working with this group of patient partners, what are some of the kinds of key issues or key things that have come up as being really important to them while thinking about this program?  

00:10:45 Genevieve   

Yeah, that's a big question. And our patient partners all had, like varied experiences with sexual difficulties after cancer, which reflects the reality that everyone has their own individual journey, and there can't be one model that fits all. So, in essence, cancer, a lot of the content that we're adapting is through the example. Specifically, we have 3 characters with their own stories and sexual concerns in this sense, and this is meant to be so that you can follow along as you work through the modules and see their development throughout the exercises. Now, at the time, and he sense only one of these three scenarios had a woman dealing with cancer and the sexual consequences of treatment.  So, one way in which we're including a lot of the insight provided by our patient partners is through these scenarios, we're adapting the other two characters such that they have three different gynecologic cancers and different concerns with their sexual functioning and well-being. We hope that while individuals taking the therapy won't necessarily connect with entirely with one of these cases, they'll be able to relate to parts of each story. Now, to address your question some concerns that came up quite often are about pain, and this category is huge. It includes sexual and physical pain. In other words, pain during sex, often with penetration as a result of surgery, radiation and hormonal changes. Indeed, radiation and surgery can leave scars inside the vagina of cancer patients and hormonal changes due to surgical menopause can lead to vaginal atrophy. So, this is the thinning, drying and inflammation of the vaginal walls, which makes intercourse painful. Other types of physical pain include neuropathy, which is the decrease or loss of sensation, numbness or pain in the body as a result of nerve damage. And then this can also impact your ability and willingness to engage in sex. Finally, you have psychological pain, so anxiety is probably the number one psychological factor that affects sexual well-being and survivors based on what our patient partners share. Anxiety or stress about sex causing a recurrence or inflammation or anxiety about losing a relationship over the lack of sex and worries about domains outside of the bedroom, such as dying and leaving your family behind and finances, came up so often in our discussions just to name a few other examples of the vast array of emotions and feelings that were expressed by our patient partners. There was shame and embarrassment, frustration and anger, sadness, guilt, fear, blame, resentment and these were all tied with their experience of self and sex after cancer. And so again, I could go on forever with this. But we're also including matters related to self-esteem and body image. The changes that occur to the body, such as scarring but weight loss or weight gain, can feel embarrassing to survivors, and this was a reason why they may not want to engage in sex. We're also addressing the shift in priorities that happens with diagnosis and treatment. So certainly, sex may not be on your mind when you're first undergoing treatment, but it's also normal and OK to want to address these concerns as they arise later on in the journey. We've also heavily discussed self-judgments and feelings of failure as a result of cancer. Our patient partners sharing how it felt as if their body was letting them down and they could no longer trusted to do the things that it's supposed to do. So, we're addressing that in the appropriate sections of essence cancer. And there's cancer thoughts, cancer fears, there's chemotherapy side effects. I mean, I could go on and on, because the feedback and insight that we've gained through our patient partners is phenomenal, but these are just some of the themes that we're implementing in the program to make it more reflective of the cancer experience. 

00:14:53 Stephanie 

That's amazing, I Love the kind of focus on both the physical, but also the mental and emotional. And I think, you know, many of the guests that we've had on the podcast and the patients that I've worked with as well have kind of really brought that to the forefront. And so, it's great to hear that the program is really kind of prioritizing that and making sure that that's built in throughout the entire kind of program and digital tool. I can only imagine kind of what sort of endeavor that is to go about making all of those adjustments and tailoring everything to this group and this population.  

00:15:36 Genevieve 

For sure. And this is just content related, right? We also looked at the formats of essence and how we can make it better suited for cancer survivors. I didn't know this, but I learned that apparently chemotherapy can leave patients with vision problems and the font and backgrounds in the program sometimes clashed or made it difficult to read, so we're also increasing the contrast between the two. We're trying to implement, potentially a way to have like the content delivered via audio. There’re some videos embedded throughout. But, you know, you can have long term brain fog after treatment and reading heavy material can be difficult. So, how can we make it more accessible, right? to this population. That's other changes we're also trying to make. 

00:16:31 Stephanie 

Yeah. Ohh, I love that. It's so exciting to hear the work happening in this space. So, obviously, I think you've been working on this for about more than a year now and you've had this great group of patient partners from what I can hear, who's so open and sharing so much of their journey. I'm curious if you can share a little bit about kind of any learning lessons that you've had while working with this group of patients and any particular challenges you've encountered, touching upon kind of a bit of a sensitive topic for some folks. 

00:17:07 Genevieve 

Yeah. Well, as I mentioned earlier, sex is still very taboo in our society as someone in the field of sexual health research, it's something that I tend to forget, because these types of discussions are so normalized in my day-to-day work. My team and I have no issues openly talking about topics concerning sex and sexual difficulties. Orgasm arousing stimuli, et cetera, right? But for a lot of people, these subjects are still hush hush, and they can also be shocking for some who grew up in more conservative environments, and I don't mean this in a bad way, but it's just that there's still a lot of people who've never talked about what a healthy sex life should be. So, coming back to your question, I think a major challenge is staying aware of the variable comfort level around this topic and meeting folks where they're at with this regard. This can mean adapting my language, letting others lead the discussion and making sure that it's clear that there's no judgment on my part if folks around me share sensitive and or personal information. This was especially true when I worked with my patient partners. Fortunately, the women who participated were open to these types of discussion, but nonetheless I had to be mindful that their experience of sexual difficulties after cancer treatments were often linked with trauma and were, if not now, at some point in their life, a major source of anxiety. So, depending on where they were at in that journey, some still experienced difficulties with sex and for them to share this with me, to allow me this insight into their experience for the betterment of essence cancer. I did not take it lightly. My responsibility now is to do them justice and create a program that reflects the vast array of experiences that survivors may face after treatment. 

00:19:02 Stephanie. 

 Yeah, that's amazing. And I think, you know, you eloquently articulated the kind of nuance and the skills required to work with patient partners effectively and really kind of touching on those really sensitive topics and especially as it pertains to cancer and that this particular group of patients. So, thank you for sharing that. I'm also curious to learn a little bit more about kind of what you feel essence cancer will be able to bring in terms of impact on patient outcomes and the quality of life for future gynecologic cancer patients. 

00:19:49 Genevieve 

Yeah, you have really great questions for me by the way. But to answer this one, the literature shows that sexual well-being has a tremendous impact on overall quality of life. In fact, sexual difficulties caused major distress and have a significant effect on the psychological well-being of survivors. Especially when these consequences occurred due to vital treatments, right that you need. So, psychological variables such as anxiety and depression have been shown to be correlated with levels of functioning in simpler terms, depression was negatively correlated with sexual satisfaction and functioning, so someone with less sexual satisfaction had higher depression. And lower sexual frequency was also associated with higher levels of depression. The same results were also shown with anxiety. So, the lower the sexual satisfaction and functioning. The higher someone's level of anxiety. Therefore, addressing the sexual concerns of survivors, can greatly improve their mental health, which directly impacts their quality of life. So, if we look at to essence. It's gone through its fair share of testing with the randomized control trial wrapping up right now and the scale up underway. And this is the direction we want essence cancer to go in. In fact, our goal is that one day this self-paced treatment can be made available for gynecologic cancer patients to take at home on their own. And this is because going back to what I mentioned earlier, there are many barriers to accessing sex therapy and this online tool would provide an additional option or an option that may help people work through their sexual difficulties and hopefully resolve some of these issues, leading to higher quality of life. 

00:21:41 Stephanie 

OK, amazing. Yes, I love that more tools and more services and supports for patients, especially in the after-treatment phase. I think we've heard time and time again that there just aren’t enough resources that are accessible. And I love what you're saying about accessibility. Because I think many patients go through a lot of other supportive care services that are already very challenging to access and to, you know, be able to afford. So, you know increasing accessibility to other resources is so important for any group of patients. Really.  

00:22:24 Genevieve 

Yeah. And you're right. I didn't touch it a lot, but there is a lack of resources. Specifically, adapted treatment options for this population, right? Because it's just not there and it's not a topic that's really brought up often in a medical settings either, unfortunately. So, we're just trying to wedge our way into this world, then offer this as an option. 

00:22:50 Stephanie 

Yeah, absolutely. I love that. OK. So, for the very last question that I have for you, would love to kind of hear a little bit more about where you're going in your future and kind of what aspirations you have, you know, throughout the rest of your master’s degree, but also beyond and kind of how you hope to continue in this particular space. 

00:23:13 Genevieve 

Yes, well it very briefly. I'm not sure. I'm young and well, I have a general idea of where I want to go. Who knows how my career will develop, right? That said, I do want to continue working in Women's Health. That's not a question at all. It's truly what I love doing. So, right now, my plan is to pursue further studies and obtain a PHD hopefully. I want to see the essence of cancer closer to use it in the real world. So, outside of academia and research, I also want to help women directly. I think my patient partner interaction has shown that I truly love that connection with people and so I'm looking at my options and counseling and clinical work in psychology and sexology. There are some programs that I could complete in the future that would allow me to have that patient interaction that I appreciate, but I also want to leave the door open to research because I truly love this type of work which offers, you know, different tasks and challenges and always keeps me on my toes learning new things, applying new concept. So yeah, ‘’who knows?’’ is my answer. I've always lived by the motto that life is a journey. You'll get there eventually and what is meant to be will be. 

00:24:37 Stephanie  

Yes. How true, how true. The world is your oyster, right? Yes, I love that. You know, I think there are so many different ways to make impact in Women's Health and in healthcare in general. So, it's great to kind of here keeping your options open and seeing what there is as you kind of go along this journey and building out this platform, so yeah.  

Thank you so much for taking the time today. I really appreciate you sharing everything that you're doing with essence cancer and building this out and kind of the impact that it will have on future gynecologic cancer patients and survivors. Is there any way that you know listeners can maybe learn more about the sexual health lab, or the project that you are doing right now?  

00:25:29 Genevieve 

Yes, definitely. I think the easiest way is to go on our lab website. It's the sexual health research lab at UBC. The link uh is brottolab.med.ubc.ca. And a quick Google search will pull it up for you, and we have a tab with studies and my studies listed there with more information on what's happening with essence cancer, where I'm at and how you can reach me if you're interested in participating or engaging with the project in any way. 

00:26:11 Stephanie 

OK, amazing. So, we will definitely put those links in the show notes and reference any of our listeners to reach out if they have any questions or if they're interested in participating. I think I'm hearing talks about feasibility studies and evaluation and stuff, so perhaps there may be opportunity in the future. So, yeah. 

00:26:31 Genevieve 

Yes, exactly. As I said, you know, I'm currently implementing those changes and creating essence cancers website, but that's going to be done shortly. We're really close to the finish line and then we're moving on to the feasibility study. So, we'll be looking for, you know, people who experience sexual difficulties due to treatments and want to try this program. 

00:26:54 Stephanie 

Yeah. Amazing. So, we'll put all of that information in our show notes, and if any of our listeners are interested, please feel free to reach out. I think this is great and would be awesome to kind of see this out in the real world and helping patients here as well as potentially in other places as well. So, thank you so much for taking the time today. 

00:27:18 Genevieve 

Thank you for having me on the podcast. 

00:27:20 Stephanie 

Yeah. No, I'd love hearing about your journey and about all the work that you're doing. So, thank you for taking. 

00:27:26 Genevieve 

It was a pleasure chatting with you. 

00:27:29 Stephanie 

OK, have a good one. 

00:27:31 Genevieve 

Have a good day. Bye. 

00:27:32 Stephanie 

Bye.