This episode of the Season 3 GOSH podcast features Lexi Mestas. Lexi shares her struggles of navigating a rare type of cancer as a young adult including feelings of isolation and infertility. You can learn how family support, community, and advocacy through social media helped Lexi in her journey.
Lexi is a creative with a background in city development, urban food access, community health, social media campaigns, fundraising, and state-wide project management. In her late teens, Lexi was suffering from symptoms of ovarian cancer but didn’t know they were related to ovarian cancer until undergoing the necessary tests. She was diagnosed with a rare type of ovarian cancer, Low-Grade Serous Ovarian Cancer when she was 27 years old. Lexi became her own advocate pursuing her passions, raising over $72K and spreading awareness through social media campaigns, a weekly newsletter, media appearances, and community partnerships.
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STAAR fundraiser for women with low-grade serous ovarian cancer:
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Cancer patient, survivorship, cancer survivor, gynecological cancers, oncology, British Columbia, podcast, cancer treatment, chemotherapy, side effects, mental health, support, fertility, cancer advocacy, awareness, cancer patient journey, resources, COVID19, pandemic, low-grade serous ovarian cancer, rare cancers
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.
Welcome to the GOSH podcast! Nicole here. Stephanie is going to sit this one out. I'm really excited to be joined by Lexie Mestas.
Lexi is a creative with a background in city development, urban food access, community health, social media campaigns, fundraising, and state-wide project management. In her late teens, Lexi was suffering from symptoms of ovarian cancer, but didn’t know they were related to ovarian cancer until undergoing the necessary tests. She was diagnosed with a rare type of ovarian cancer, Low-Grade Serous Ovarian Cancer when she was 27 years old. Lexi became her own advocate pursuing her passions, raising over $72K and spreading awareness through social media campaigns, a weekly newsletter, media appearances, and community partnerships.
Thanks for joining us today. Welcome to the show, Lexie!
Thank you for having me! Excited to be here!
To kick us off, we've got a little icebreaker question to get started. We heard that you had a food blog where you shared different recipes, and you've also got a master's degree in food studies. So, big question for you, what is a meal you could eat every day? Or if you could only eat one meal every day, what would it be?
Oysters! I'm a Gulf Coast gal! So, I love oysters and could eat them from anywhere all the time and never get sick of it.
No, not concerned if they're too big, too small.
I love them all. Char grilled ... I love them all. There's no discriminating against the oyster.
Yeah, I love it.
All right. Let's get to the reason why we are actually here. Why don’t you start off by telling us a little bit more about yourself and your journey with cancer?
Sure! I think that my journey with cancer started a lot earlier than being told you have cancer. I had severe abdominal pain from the time that I was about 16-17 in high school. There was a lot of bloating. It seemed like maybe it was related to GI (gastrointestinal) issues, or that it was dietary. Lots of distended sort of abdomen, frequent urination. It went on for a very long time, worsening dramatically until I was 27. I had just atrocious pain. Beforehand, I had some spotting, which is super abnormal for me. Lower back pain and intense fatigue like could not stay awake no matter what I tried to do. Middle of the day I was out. And I just thought these things are very strange. In the middle of COVID everyone wanted to blame everything on COVID. Didn't know what's happening to me. And I had this lower left pain. In particular, that started getting worse and worse over the course of a year. I saw a GI doctor, and I mean many times. So, this is the same doctor, and he was like, you're constipated, just take some fiber and then I was taking too much fiber. There was no right answer. This pain became so severe that I was vomiting uncontrollably.
My husband is like “What is going on?”. We call my dad. He's like, get her to the ER immediately. Both my parents are in the medical field and if they're saying like go to the to the ER, like this is serious. I got there. In my head I was so convinced, and I had been told for so long that this was GI related. I came in strong saying "Oh, I have a bowel obstruction.” And they took one listen to my bowels and they're like “No, your bowels are moving smoothly.” I just had this moment like the air sucked out of the room like “What is this? What is happening? Is it an ectopic pregnancy? Am I dying?" Not one time did it go through my mind that this could be something related to my gynecological health. What's wild and what blows my mind is that I had all of the symptoms. But if I type in those symptoms on Google, it doesn't pull up anything related to ovarian cancer. It it's so hard because the symptoms are so related to GI symptoms as well.
So, I was told “you have cancer” over the phone because of COVID. I mean, it just completely shifted my world. It has changed how I work and what I do. It was earth shattering information, but somehow relieving to know, after going so long of living in pain.
Yeah. There are answers. I imagine from there you got a path forward and a treatment plan and have them working through that.
Things moved very quickly, but there's something odd about being a young person with a gynecological cancer. That you have to have a conversation about your fertility. With my cancer, because what sent me to the hospital was actually a torsion ovary[=a condition that occurs when an ovary twists around the ligaments that hold it in place]. And they couldn't actually see the ovary because it was covered by three massive cysts the size of my hand. And I don't have a large hand, but It's still very big. They said there's a kind of odd line of cells. We think it's endometriosis, but we sent it to pathology just in case. And in my head, I just never thought about cancer or anything along those lines.
So, they didn't do what you might do if the type of cancer was known. Is this like estrogen positive? What kind of cancer is that? They weren't going to do that until they went in to do my exploratory by debulking surgery. So, we had to make a lot of decisions. Very serious, scary, sad decisions without having a lot of these answers. We made the right decision. But I was told, you know, “You're 27 years old. If you want to have a baby right now, we will pump you full of estrogen and that could make the cancer worse. But you would do the egg retrieval and we would poke through your ovary and potentially having cancer oozing out into your abdomen. And you could have a baby. But you would live a very short life. Or we could just go in and take it all out and get more answers. Lexie could live as long as Lexi could.”
I was like “Ok. Well, obviously that's not really a choice for me.” There's a huge grieving process and that and I think that's something that is so overlooked in Adolescents and Young Adults(AYA) ovarian cancer.
We are so young and we're at the age where there's so many of us discover this cancer because we're going through fertility treatment. I am not one of those people, but that happens very often. It is a crushing piece of our experience to not be able to relate to people who are our age anymore. My husband and I think all the time, inevitably “we're going to reach an age where every single one of our friends has a family and we don’t.” And it's a daunting sort of experience.
Did you know you want to have kids? Like that was your potential future or were you on the fence about it?
We were so career driven, like everything was career. We were thinking when we were like 35-37. But it wasn't like we never wanted to do this. So, I think that just for us, not having the choice was so awful. And there are these fleeting moments that we have. We hosted our whole family over for Christmas in our new house last year. My husband doesn't really talk about it much, but he was like “it makes me really sad to think around holidays like this. Like, we're never going to have like kids running around.” There are those moments and I think that ovarian cancer is so often thought of as an older women's cancer. It's just not. There's so much conversation to have around the struggle that AYA patients have with this cancer.
Yeah, I 100% agree and I can definitely relate in some way to having to make those tough choices. We talked about in your bio that you've got low grade serous ovarian cancer, which is a rare type of ovarian cancer. I mean, aside from what we were just talking about with the challenges around fertility, what other challenges have you experienced or are you experiencing having a rare type of cancer?
I'm the kind of person that is like there is like doing nothing is not an option. I am a do-er. But I am almost doing too much maybe. But when I did a lot of research and was connected with Cure Our Ovarian Cancer, which was the first organization or charity that exclusively revolves around research for low grade serious. They're out of New Zealand. Then there's STAR, which is their sister organization here in the US. This rare subtype only receives 1% of all funding for ovarian cancer research. Recently there was a $50 million grant or amount of funding that went to research for ovarian cancer and low grade serous got 0. Because the idea is that they're 1in 1000. It's not that big of a deal. We'll give it to the population where there's more people. It's devastating and terrifying because the prognosis as a 27-year-old is an average of 10 years. I have so much that I want to do. We all have so much that we want to do.
Back to the fertility beads, people were like “why don't you just adopt?”. Well, that's a huge decision to make when I have a prognosis like that. So that is, that is a huge, huge challenge.
The other challenges with low grade serious I think are that it disproportionately impacts young people with ovaries in their 20s and 30s. And as we know a AYA patients face a myriad of very unique challenges. Maybe not having a partner yet and trying to describe this to their partner. Or losing their partner because their partner doesn't want to sign on to have this type of baggage and this type of life. It is just really hard to feel not seen by a government that is supposed to be funding us. Because of that lack of funding, we have very limited treatments available, which is why our prognosis is only average of 10 years. Because it is a very slow growing cancer. We deal with just very challenging things, being young and feeling so isolated. Having cancer alone is already very isolating. It is so isolating and to have a rare cancer as well. You find yourself in the waiting room and you're the only one your age and the only one who can understand the pain of not being able to have kids because all the women in the room have adult children of their own. It is just one huge challenge, the entire experience.
And how do you navigate that? Because that hits so many different areas, physically, mentally, emotionally. How have you supported yourself through that? Or have others helped support you through that?
Step number one was writing like a madwoman. I avoided therapy during. I think this is pretty common during treatment because I was like “ I'm in survivor mode right now, I can't talk about this hard stuff right now. I can't do it.” And I got everything out onto Google Doc or Substack and just published everything. I started a newsletter called “Hypochondriac” about my experience because I had been quite frequently called a hypochondriac. And it turned out to be something serious. I like a good comic relief. But this dark comedic, like very honest and raw way to just get it out there. I felt like I needed to be able to control the narrative in this because everything was so out of control.
In that same vein, trying to be able to control anything. Fundraising was huge for me. I dove into it immediately. My first fundraising effort started on March 21st of 2021 and I had my debulking surgery on March 3rd of 2021. Like I was not messing around.
You got ready to work.
Work. Work. I got it finished, went into therapy, had recurrences and like things have continued to be hard for me. This has been a year and a half long process that has not ended. Therapy has been incredible. I highly, highly recommend. Also allowing yourself to continue living despite someone telling you as if they've looked into a crystal ball how and when you're going to die. Because life continues. Your life is going on, and really, really good things can happen at the same time that bad things are happening. And I made this move home, which I had not lived there in 10 years, and I only ended up there after Katrina [-destructive hurricane that caused over 1,800 fatalities in late August 2005]. So, it wasn't really like home to me. My husband and I moved home because, I was like “I think I'm dying. I need to be with family.” And it just was not the right fit. It was not the right fit culturally. So many of our friends already have full families. It just wasn't right. We were supposed to be moving to New York right before my diagnosis. We were just like “You know what? Let's go. Let's go and go do things that you still want to do”. Because your desires absolutely change when you are diagnosed. Your life totally shifts. But some of those pieces that are still you that you still want, go do those things. Because you live in limbo with cancer and to grasp control of things that you can and want to control and feel alive again in some way is so powerful.
That's really the main way that that I have been able to navigate through this. 100%. I will also say with the help of my incredible husband. I know it comes from a place of privilege when I say this because most people my age do not have a partner. But we have been together since we were 14 and 15. He knows me inside and out. To have that kind of support is just incredible. I mean, it's priceless. You feel so lost in this. Because my life was so career driven and I had this feeling of like, “What am I supposed to be doing? This job isn’t right for me. I don't like this. I don't know what I am supposed to be doing?
And I walk one day, I asked my husband “What even is my dream career anymore?” He said maybe we shouldn't be thinking about dream career but more like “What's a dream life for you?” And it's just so helpful to have somebody who knows you and can ask those questions and allow you that kind of space to be vulnerable and explore those things. Also, like very honestly supporting us financially and providing me a space like “I'm a freelancer. You provide the insurance.” I'm very lucky and a lot of AYA patients don't have that.
If there was one thing that you wanted those AYA patients to take away or to know, what would it be?
There are so many things. I will say life doesn't end with the diagnosis. And I think for me, I felt so crushed because I had such plans for How I wanted my life to be. Such vision. Not everybody has such a need for control like me. But bad can keep coming, and sometimes it can feel totally overwhelming. But that there are just awesome things in life that can happen at the exact same time. Like I had a toxic response to my oral chemo and I had no idea this was happening. Meanwhile, I'm literally surfing in Hawaii with an EA Cancer camp, project Koru, and having the time of my life. So many beautiful, amazing things can happen in the midst of cancer. Just because it's there doesn't mean that it is your life. It's just a piece of it. That has been a huge lesson for me.
Yeah, it doesn't define you or who you are.
I think we talked a lot about on the podcast and at the Gynecological Cancer Initiative we talked a lot about cancer survivorship and how it is really important to think about the whole person. Like just as you're pointing out in terms of AYA patients and some of the unique challenges that they have. I know you're still sort of going through it, but how are you navigating that? Life after cancer. Life kind of moving forward and the survivorship aspect of it.
And again, going back to therapy. Therapy is best. My therapist helped me so much.
I was like,”I don't know what I'm supposed to be doing with my life and my career. The only thing that feels good for me right now is fund raising. I just love it so much”. She was like, “Well? When did you know what you wanted to do in life? “. I think I might have been like first or second grade. She was like, “Well! OK. So, what if you think about how you want to live your life moving forward with this huge change in your life, your life has changed. What if you looked at this with this childlike wonder? Allow yourself, don't limit yourself to “I'm supposed to do this? Or I liked this? Or I wanted to do this. Think about it in in a way of what excites you, what interests you. And if it's totally different than it was, that's fine. You have space to learn and things to do.” I never thought that I would be a freelance social media manager or part time and then part time just raising loads of money for fun. Some days I'm like, I'm kind of still figuring out what it is that I want to do. But I found that cancer gives you this kind of like get out of jail. Get out of life like free card, like, get out of the rat race free card.
You can do whatever you want. And I love that. I love that I can say “You know what. I feel like going to take a trapeze class, because that sounds interesting right now. Or I think I might ask my friend to teach me how to play the drums. I think that having that kind of wonder helps you as well, when you feel like things are ending in a weird way.
Yeah. And I think whether you had a concrete path forward or not, it really rocks your sense of self and your purpose. Who you are? Your relationships. Like it impacts every aspect that you have, and there is this regaining or relearning, rediscovering it. Like the way your therapist framed it. Having that childlike wonder of who I am now or what matters. Because I think for a lot of people, for myself included, that shifted. What I thought was important was no longer important. So, I think that's really important too. I like the messaging that you're providing. In having that as more, I think it could feel overwhelming. But taking that more positive and curiosity approach to it.
Yeah! So, you're really active now doing advocacy. You've got your blog, you've got Instagram, you're on TikTok. what motivated you to start with social media advocacy?
I've always been very active on social media because I had a blog and it was just a comfortable place for me. And going back to like that need to control my narrative. I did not want people to be like “Oh. The sick girl?” or “Oh, she has cancer” or assuming that I was going to die, because in my mind, I'm like, I'm not going to die. I'm not design deciding this. No, absolutely not. It became more comfortable for me. I have started to push really heavily on educating people, sharing my story and being very honest. People are like “Thank you so much for doing that. It made me feel comfortable to share mine”. And if we're going to talk and reach young people about ovarian cancer or gynecological cancers or cancers that don't typically happen to young people, the best and fastest way to do that is on social media.
I'm like OK, reels. Like everybody making reels, that is reels are reigning supreme on Instagram right now. Tiktok is all short form video. It's so easy to just find a trending audio, put your experience to it and people are shocked to see that this young healthy-looking person had this happen to them and that it could happen to them too. Especially people with ovaries are absolutely shocked when they're like, “Wait, you had bloating, abdominal pains, urination? I have that too.”
So yeah, I social media was like a given. It was just like a place for me where I felt completely comfortable. At first, I was just sharing my story and not really trying to reach a massive audience or anything, but it started just rolling out and more people with ovarian cancer and gynecological cancers started following me and it continues to expand. Since maybe February or March of this year, I started this thing called “Serous Sunday” and every Sunday I post education and tools and resources about Low-grade Serous ovarian cancer, and we fundraise for STAR. That has been really fun and I'm considering doing like some sort of a live where I can get more even not just low-graders [people living with Low-grade Serous Ovarian cancer], but young people with ovarian cancer and even people in the cancer community, maybe in the nutrition space to provide some resources.
But social media is my home. I live there.
What a great way to educate and build awareness. Because I feel like especially in a younger population, things like ovarian cancer, you know, because it typically impacts older women, we just are not aware or know to look for the symptoms. I mean so similar to GI, but also so similar to just as women, the type of symptoms we get every month with our periods, the bloating, the pain. So, I think it's really easy to pass them off as things that are not threatening or part of the joys of being female. I love that you're bringing so much awareness in such an easily accessible way to a younger population.
Yeah, you know, I felt like when I approached it, I wish that there was something like this that I had found beforehand. I can't believe that I had all of the symptoms that I couldn't just type into Google and have ovarian cancer pop up. That was constantly something like diverticulitis or something completely like GI based and not happening to me. I just hope that people find me and my messaging before it happens to them. If it's not as an AYA patient, it may be as a woman in her 60s. It's given me a lot of purpose and definitely way to giggle about it. Because Reels can be hilarious. I will make so many of them and I'll show my husband like look at this line. This is so funny. And he's just like I Know that this is funny for you, but this is not funny for me. Like if someone's gonna laugh about it.
Sometimes you just need a little humor to work your way through it.
Yeah, definitely. That is for sure been the way that I have coped. That's definitely been a coping mechanism.
I think it helps to just come, you know, for others who you know if they're going through something similar. It provides validation, if you are feeling isolated, you don't have somebody to talk to. Then you stumble across an account like yours that is honestly sharing what that experience is like.
It can be so validating to know that you're not alone in what you're thinking or feeling or going through, which I think builds a sense of community without directly having a community around you, which I think is really helpful.
Yeah, I definitely, definitely feel that. Yeah, it is very, very isolating.
I think when I was first diagnosed, I was constantly asking like, “Where are we all?” Like, they're there. We're out there and “what's happening out there?” Of course, Facebook groups and that sort of thing, but it does help so much to see that other people are going through it. You know, when you first get diagnosed and you're looking at other people's Instagram and you're like, “Oh that person is not alive anymore. They haven't posted since 2012.” Like just really morose, sort of like.
Yes, I do share my experience with things from time to time, but it's so nice to just, I think, have an account that's trying to just push information. And give you a little bit of laughter like a moment of giggle break. I think the fun part about it for me is that it's constantly evolving and doesn't feel like it has to be this one thing or any one way. For me having any kind of freedom right now is like gold, because having cancer can just feel so constricting. Having to go to this exam and this appointment and these injections and this CT scan and all of these things and take this medication every day. And just to have some freedom. It is wonderful. I encourage everyone to start some sort of social media account. It'll be fun.
Well, in our show notes we'll definitely link yours so our listeners can check you out. And if anybody is interested in starting their own, they can maybe gain some inspiration from you. So just last question for you. What advice would you give to patients who are going through a cancer diagnosis right now?
Like newly diagnosed? Well, stay off Google.
It's always one of mine.
Stay off google if you can. And allow yourself some grace. This is uncharted territory. If you don't want to chat with the person who somebody knew somebody had cancer at one point in time, you don't have to. If you want to pretend that things are totally normal, that's fine too. If you want to avoid therapy, that's fine too. There is really no one way to do this, but I would say really take stock of how you feel and allowing yourself to feel that. Then take advantage of what resources feel right to you because we are all different going through this. We all respond to trauma in a very different way and maybe making very dark TikToks about it is for you. And maybe talking in a, you know, support group is for you. Support groups sound like a nightmare to me, but I think that the right thing to do is just know that there's no one way to do this. There's no one way to be a cancer patient and allowing yourself to the grace and the time to figure it out and grow through it is the best thing that you can do for yourself. And completely release the pressure off of yourself.
And it can change as you go through the journey, right? Dark TikToks might be fulfilling at one point, and that support group might come in down the road. You just never know. But I love that message of providing that yourself, that openness, letting go of that perfection and just, you know, moving through. Very good message.
Well, thank you so much, Lexie, for joining us today and sharing your story. It was really great connecting with you and getting to know you more. We'll definitely like I said, link your social profiles in our show notes so people know where to where to find you and connect with you.
Amazing. Thank you! So much for having me! I really enjoyed chatting with you.
All right. Thanks everyone!
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.