Season 5 Episode 7: Ostomy, Advocacy & Redefining Life After Vulvar Cancer

In this episode of the GOSH Podcast, we continue our rare cancer series with Carly Allen, a passionate advocate and survivor. 🌟🎙 After a  misdiagnosis, stage 3 vulvar cancer, and a recurrence, Carly underwent life-changing surgery—including an ostomy—that ultimately removed the cancer for good. Now, eight years cancer-free, she shares her journey of resilience, self-love, and advocacy for gynecologic cancer and ostomy awareness. Tune in to hear her powerful story and how she’s redefining survivorship.

Resources:

Carly's Beyond the Stories Episode: https://youtu.be/mfB4u5LWaAE?si=GZikUJNgnsyplFYH

Carly's Instagram Ostomate and the City: @ostomate_and_the_city

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

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

Transcript

00:00:01 Intro 

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

00:00:36 Sabine 

Hello everyone. My name is Sabine and I'll be your host for this episode of GOSH podcast. Today, we're continuing our rare cancer series with a new inspiring guest, Carly Allen, a GCI patient partner. You may remember Carly from our “Beyond the Stories” series on YouTube back in 2022 where she shared her journey with Stage 3 vulver cancer. Diagnosed in 2014 after years of extreme pain, discomfort, and countless misdiagnoses, Carly's battle included chemotherapy, radiation and surgeries under the expert care of BC cancer. Despite facing a recurrence in 2017, she underwent life changing surgery in 2018 that included a colostomy and hysterectomy, removing the tumor for good. Since then, Carly has become a passionate advocate for gynecologic cancer and ostomy awareness. Through her Instagram platform, Ostomy and the City, she inspires others by sharing her journey with authenticity and self-love. Now, 8 years cancer free, Carly continues to empower women and redefine survivorship. We're thrilled to have Carly back with us today to share more about her story and her incredible work. I hope you enjoy this episode. 

00:01:48 Sabine 

So, let's just get started. So, I want to start by asking you when we were having a conversation on the phone, you told me that your medical complications started earlier than the cancer, and that early on in life you faced some health challenges. I was hoping you could share a little bit about that. 

00:02:05 Carly 

Yeah, I mean, I just remember being like in grade 6 or grade 7 playing soccer and I had trouble, I guess, I peed my pants a little bit. And I remember my mom and I talking about it, and I was so embarrassed, and I didn't really understand, we didn’t think any of this at that time? So, I really always kind of struggled with like bladder control. I did sometimes feel kind of not so great when it came to foods, but nothing that sent me to the doctor or anything like that, but just some minor things with that. 

00:02:40 Sabine 

So, from that, in your adult life, what were the initial symptoms that led you to seek medical care? 

00:02:48 Carly 

Yeah. So, in the early 2000s, I had what's called bartholin gland cysts, and I went to the hospital, had some surgeries. Unfortunately, I even had a cyst that first. It's called marsupialization I believe if I remember my information correctly. And that was kind of what we thought that's all that it was. And I'm pretty sure at the time they also biopsy your tissue and, you know, try to see what's causing these things, but nothing was alerted then. So, jump forward Many years later, I started to have pain while sitting. That was my biggest symptom. And it started feeling like I was sitting on a pebble, which made me think it was another cyst. And then it kind of felt like a marble and like, the size just kept increasing and the pain kept increasing with it. So, I would go to the hospital, and they were like, oh, yeah, it's probably another cyst because you reveal your medical history and make sense that it would be that again. And then I went to my GP, and he was like, let's get you a referral to a gynecologist. And nothing happens overnight. And so, I just kept living with the pain. But I knew it was getting worse all the time, and so I kept going back to the hospitals and no other results were being told to me that it was anything else. And so, I just lived in constant pain. 

00:04:12 Sabine 

And how long was that? Until you got that diagnosis? 

00:04:16 Carly 

I mean, probably a good year from when I really started to feel the pain, the pressure sitting down, like even coughing like everything in that area just was really unpleasant. And yeah, it was probably pushing a year. 

00:04:32 Sabine 

Yeah. And you told me that you faced a lot of disbelief and unfair treatment at work due to the condition, people weren't believing you, your boss. How did that experience impact you emotionally and physically? 

00:04:47 Carly 

Yeah, I mean this is, you know, in 2014 when this all came to light. In 2025, now you see a lot more balance when it comes to how you treat your employees in the workplace. Fair quality, all that kind of stuff. But I was going to the ER like all the time and calling in sick to work. And they don't.. I don't think they believed me. Like I had told them. Hey, like I'm waiting for more, doctor, something's going on. Like I couldn't sit in the chairs at our meetings Because it wasn't comfortable. And when you can't sit and walk and you know, feel good. The last thing you want to do is go to work. And my pain was really high, and I didn't have pain medication because I hadn't figured out what was wrong with me. So, I was taking Medications that weren't treating the root cause, like an antibiotic, if it was a cyst that had burst type thing. And when I was in the ER, I remember having to send a picture to them of me in the scrubs and IVs because they didn't believe me, they just thought I was a young girl who maybe partied too much the night before. But I Wasn't the type of employee that called in sick on the regular before this happened? So, it was really hard to handle because it started to also give me a little bit of a complex like “AM I, you know, making this more than what it really is or is? Or is it waht it really is? What did I do to myself?”. So, I started putting it back on me versus thinking, hey, they're not treating me fairly. Like something's up with my health. 

00:06:19 Sabine 

Yeah, they definitely weren't treating you fairly. It's very shocking and surprising that anybody would react that way, to be honest to that. 

00:06:27 Carly 

That would not happen now. 

00:06:28 Sabine 

Yeah no, hopefully not to anybody. And can you talk about the emotional and practical challenges of deciding on the treatment that impacted your fertility that we talked about? 

00:06:41 Carly 

Yeah. So, once they diagnosed me, which was, you know, it's only journey just to be diagnosed, Obviously, it all happened really quickly because I was diagnosed at stage 3. So, I was 38 years old, I was gonna be 39 in a couple months and they were like you have cancer. You're gonna need chemo. You're gonna need radiation. And those are gonna affect your fertility. Do You wanna be a mother? And I had never really thought of it in those Terms because I always was like, well, if I ever meet someone and have kids, cool, and if not, cool. When cancer is on the table and it makes that decision for you, It's a whole other ball game. And I just remember being like, wow, like, I'm not actually making this decision for myself, my illness is, and I have to decide this within a couple days, you know? And I was like, how Do I decide? Because they said we can try to retrieve your eggs but there’s No guarantee that it would work. And again, we have to do it quickly Before we get you into Treatment, do you want to do That? and you can't decide that in 2 minutes, you know. But I really only have like 24 hours to decide this. And so, I spoke with my friends and family. Lots of tears were shed and ultimately, I made the decision not to go through the process because I Was 38. Had I been 28, Absolutely, because you don't know where your life's going to go when you're 28, When it comes to motherhood. But at 38, I thought, you know what? It's just not in the cards for me. I would have needed a surrogate. You know, I wouldn't have been able to carry the child. All those factors came into play as well. And so, I just mourned that part of what I thought my future would be, Because 17-year-old, me always thought she would have, you know, 4 kids and all that kind of, you know, happy family life. And now her i am at 38, going wow like this is never going to happen for me and That was a lot to take in. 

00:08:43 Sabine 

And do you feel like your family and friends were supportive or were they influential? Was it overwhelming to hear everybody's opinion? or were you able to kind of like put that aside and be like, this is what's right for me? 

00:08:56 Carly 

Yeah. I mean, most people just listen to me because they can't really tell you what to do, right? It's Your body, It's your life, It's your emotions. So, they just listen. A lot of great conversations with my female friends, in particular about what does it mean to be a woman? You know, like, first of all, I'm diagnosed with this cancer, this vulvar cancer diagnosis, Now I'm talking about do I ever want to be a mother? And this is what I would have to do if I did want to be a mother. Like how am I even going to be a woman when this is over? That Was really a hard conversation and a lot of hugs, and a lot of raw emotion. And I just told myself, like, there's a lot of women in this world who don't have children for a variety of reasons, not just illness related. So, what you know, can you take inspiration from those women for yourself to know that being a mother doesn't make you any less of a woman. 

00:09:55 Sabine 

Absolutely. I think obviously it's a little harder when someone's telling you like you have to do it or like it is because of your physical health. So, it's a bit tough, but I agree with you. After your surgery and the reconstructive surgery that you went through, what was the recovery like? And previously you mentioned that a nurse had said something that was deeply reassuring. Can you also share that with us? 

00:10:23 Carly 

So having gone through cancer twice, I learned a lot of things in the first battle That kind of carried into my second battle. And you're so, not naive necessarily, but you don't know what to expect when you're first starting this, because it's all new, and it's also a rare cancer to put on top of it, right? So, I was a little stronger mentally, so I went through the 1st bout with, you know, chemo, radiation, surgery. And then the cancer was back and I had to have pelvic exenteration surgery, which would mean I was already infertile, but that was already done, but I still had all my parts on the the inside.  I didn't have a hysterectomy during cancer 1. so now I'm having this pelvic surgery, which requires a complete hysterectomy, Vulvar recunstruction, A colostomy bag, the removal and closing up of my rectum, and I was just like, wow, I just told myself it's a I'm going to be a woman, so I still have worth And now all this. I'm like man, like, how strong am? I like this is this is hard, right? And so I remember going into the hospital to be marked for the colostomy bag. And I was in tears, Like not just rolling down, not like sobbing, out of control of it. And it was a male nurse and he's like, are you? And I was like, no, I'm just really scared. And at that moment, he thought I was scared about getting the colostomy bag. And I said no, I'm not scared about the colostomy bag. I'm scared about the builder reconstruction specifically, and he said “don't worry if we can reassign gender in this hospital, we can fix you”. And i just gasped. You know, like he didn't know what was going on with me, really. And he was So quick to say that to me and it still sits with me today, you know, and and it's what, 2025, ten years later now. And that was huge. So when I went in for the surgery, which was just a few days later, that was just on repeat in my mind. And I think that nurse is probably most impactful in my mental health Recovery than almost anyone else in those two minutes, he really affected my whole life in a positive way. 

00:12:36 Sabine 

Absolutely. And do you feel like your experience with healthcare workers has been mostly positive? somewhat negative? Is there anything that you as a patient would ever want to tell healthcare workers how they treat you know, patients? 

00:12:50 Carly 

I have a lot of respect for people who work in the health care system of all levels of their employment. Be at the front desk clerk or the person giving you your chemo, or checking you into that hospital. It Is not an easy job. And so, I always try to treat those people the way that I want to be treated. And instead of my anger coming out on them just because they're in the place that I don't want to be in. I don't want to be here, right? I Don't want to have cancer, but they didn't do this to me. So, Treating people as kindly and as Coherently, when you're on medications as possible is a really good thing because not like they don't take care of patients who are rude and mean that the kinder you are the kind of your treatment is gonna be. And so, I just always was kind. Didn't say that I didn't have moments where I had to say, like, hey I Need some more medication, Like I'm in pain, but generally I just treated them like they were my new bestie. You're in the hospital for a long time and you wanna be friends with those nurses that are overworked, those doctors are like, overworked, everybody's overworked. So, I really just Try to maintain like a good vibe, friendship with them and it kind of paid Off in the end. 

00:14:04 Sabine 

That's definitely the right perspective. And so, I Want to talk a little bit about your living with an ostomy bag. And so, it's obviously very life changing, but can you describe how you adapted to it and what the journey was like for you? You were telling me a little bit about the choices you had to make. Kind of Advice you would give to other people. 

00:14:27 Carly 

For sure. An ostomy bag, for those of us who don't know anything about it is a really scary thing. you know, to go #2 from the front versus the back is, it's odd, right? Even though there's 13 million plus people in this world that have one, it's still a really stigmatic thing to talk about to think about. And so, during cancer number one, it was always on the table. If I wanted to get better margins, an ostomy bag was always on the table, but of course nobody wants one. So, we proceeded with other types of Treatment to theoretically avoid it. So, when it was my reality, I did a little bit of research about it, but not too much because I find that doctor Google can be not your friend and you hear horror stories a lot easier than you do the happy stories. And so, I just kind of said to myself, like you're going to Be alive. If You deny this surgery, this pelvic exenteration surgery, you will not be here in a few months. And so yeah, it sucks that you're going to have this, but it sucks more to not be here anymore with your family and your friends. And so that mental part for me really helped me go from there. Not To say that they weren't challenges or moments. But I was in a bad way, after radiation, like pelvic radiation Destroyed my sphincter and I had no control. I was wearing adult diapers. I was soiling myself on the regular. I had anxiety that was 20 out of 10. I was homebound because of those accidents. So, I also looked at it in the way of hey, I'm getting this colostomy bag that's going to help me get rid of those problems that are way worse than what this is going to be. And so, I just tried to find the silver lining. And now I jump forward Like almost eight years to the day, it'll be 8 years next month and it is nowhere as bad as Thought it would be. 

00:16:28 Sabine 

Yeah. And it's great that you've stayed pragmatic through all of this. And speaking of that, so you have a platform called Ostomate and the City, which has been very inspiring, I'm sure for a lot of women. What motivated you to start it and How do you Has it helped others connect with each other? 

00:16:49 Carly 

Yeah. Again, over time, just like healing, social media changes and involves and what Instagram was in 2014 is nowhere in comparison to what it is today. But I'm a single person, even though I have great family and friends, I live alone, so I needed to find a sense of community. And Instagram is where I went. And I searched hashtags and I was not even out of.. I didn't have my platform yet. I was just searching hashtags and seeing what other people Were talking about. And that kind of “Oh, so there are more people like me, OK.” And over time, I would watch their videos. I Had my surgery. I probably had my colostomy for about 6 months and I said I think I'm gonna talk about this too. These People are inspiring me, right? And I was like, I need a cool name. Like something kind of fun and I Love the show, sex and the city, still love the show sex The city. And I would just said to my friends and family, like, if you want to call a channel by a name for me, what would it be they were like Well, it's gotta be Ostomate and the city because you love sex in the city. And i said “ that’s brilliant!”. As a person who has an ostomy bag, there’s various types of ostomy bags, and that’s an ostomate. So that's how I got the name ostomate and the city and it's not just about ostomy life. Primarily it is because that's also where I'm more comfortable and we can talk a little about that. About I talk about cancer, And in my stories I talk about the makeup and fashion and share pictures of my cat because it's about my life, which is exactly what the show was about. It Was about their their lives and what they did together. And that's kind of what I'm doing with my community Out there. 

00:18:32 Sabine 

Yeah, I mean I follow you and It's so fun to watch. Like you're so great with social media. 

00:18:37 Carly 

Thanks! 

00:18:38 Sabine 

And I was wondering have support groups played a role in your journey at all? Do You recommend them to others. 

00:18:44 Carly 

Mm hmm. Yeah, I think no matter what you're looking for be. If you're a golfer and you wanna hang out with other golfers or if you're a personal cancer or an ostomate, you know, whatever the case, finding people who are in similar predicaments as you or similar interests as you Is very important. And I wanted to find that community early because I felt alone, Not meaning like again, that I didn't have support, but just that I didn't know Anyone else Like me. And so I just got on Google and said “Vancouver ostomy bag”. And up pops this chapter, the Vancouver United Ostomy Association and I was like, oh, there's a whole association in Vancouver. Cool. This is awesome. so I reached out and I also reached out to ostomy Canada. I Was very new, I didn't know what these organizations were, I didn't know they were volunteer run, I didn't know anything at the time. and I started to go to some meetings, and then I met other people of various ages, various reasons as to why they have their ostomies. And I was like, wow, it feels great to be around others, not just looking at someone on a computer, but actually like in the same room as them. And with that, I kept going and Then I was like ok I think I'm going to volunteer now. So then I volunteered as the secretary. I wouldn't say I Was the best secretary that they've ever Had, but I did volunteer. And just this year, I've taken on the role of membership and coordinator. So I'm going to help, you know, make sure people are joining and renewing their memberships, That type of thing. So over time, I've kind of changed my use of the chapter and also my involvement of the chapter. And on Instagram I found lots of people that weren't even part of the chapter that lived in the Greater Vancouver area and we just get together on our own for dinner or hang out at somebody's house, and we've become really good friends. And we have a group of about 12 of us who see each other every few months, and we just, like, hang out again all ages, all Reasons, but still medical journeys. And we just bonded and become really good buddies. 

00:20:55 Sabine 

That’s amazing. You've created so many community just on our own and you're also a patient partner with the GCI. So how did you come to be part of that and what’s it been like? 

00:21:07 Carly 

So that started, I don't have my calendar, but many years ago When I was still off work, When I had a little more time and I still wasn't like as healthy as I am today. And I Was approached by Stephanie. And I did that interview Which we have on the YouTube channel and it's been seen by quite a few people. And then I would join on the zooms and you know get input to create educational content, whatever we are working on. I did take a little bit of a hiatus because my life started to change and when your life starts to change and for me at the time it Was for the better, The amount of time you have to put towards other things changes as well. and I had to really focus on just getting back into the workplace. I was off work for mostly six years. And then I got a job and I just celebrated my three years being back in the workforce. So I had to really concentrate a little bit more on me, but now I'm back with the GCI. I'm on a call tomorrow because I've just really figured out my balance of my life a little Bit better. In the beginning, going back to work after such a long time, and I still wasn't physically where I wanted to be, It was really hard for me mentally. and I had to take care of myself before I could take care of others. And I've done the work and even though I'm still overwhelmed with all the things that I do, it's a different type Of overwhelm. 

00:22:36 Sabine 

Well, your involvement is very important No matter how how little you think you're doing, you're always doing the most. It's excellent. And are you involved with any other programs or initiatives similar to this? 

00:22:49 Carly 

Yeah. So they're still volunteering with the vancouver United Ostomy association. I do my social media. I work full time for a healthcare company. so one of the things that was really important to me was to make this bad stuff kind of make sense in my life. And I wanted to work in healthcare so badly, at the cancer agency or a warehouse, just some medical is what I wanted. And when I went to the support group meetings, I met a gentleman by the name of AJ who has an ileostomy bag which is connected to a small intestine From gut disease. And he has an online store for medical supplies, And they were looking to bring on someone for the team. And I said, Oh my gosh, let’s talk! So in those conversations, I was offered a position where I could work from home. I could use my tech savvy skills. I do like maintenance of the website marketing type work and I've been there now for three years and it just is a great feeling To answer the phone and talk to someone who's going through a medical journey. And when I tell them my journey, they're like, Oh my gosh, I don't think I've ever called somewhere and actually talked to someone who knows what I'm talking about Like from life experience. And so it's it's definitely been a gift to be able to work. The company's called inner bid and it's basically like an online medical supply store. 

00:24:16 Sabine 

Yeah. And your experience is very valuable. Like definitely. And I just have a last question and then we can talk about anything you want to talk about. But what advice would you give someone facing a similar journey? 

00:24:31 Carly 

You know, it's so hard to give advice when everybody's situations are different, but I think, I Don't know if motivation is the right word but, Just remember that you have worth, you know, and it's OK to be different, you know. breast cancer survivors are different, vulvar cancers survivors, colorectal, ovarian, it doesn't matter. The cancers are everywhere more than ever, and it's not easy to go through. And if there's a way that someone can just stay out of the darkness, That is key. It is so easy to go to the dark side, more so than it is to stay in the light side like the bright side of things. Darkness always wins. And so I just kind of told myself from moment 1 like this is now your new job to fight this illness, But also your main job is to stay like sane, because the more you learn about what your disease is and how you're going to treat it and what it's going to do to you, it's like depressing and scary. And  so I just was like, you know what? My mom is my main note taker. If I need to leave the room because it's too much, I'm gonna leave the room, as long as mom knows What they're gonna do, we’re Good. And so I really, I always knew what was gonna happen, but I didn't need to know Every microscopic detail because I would have gone crazy. You know, and I Think as much as it sounds corny to say Stay positive, you don't have to be positive. It sucks. Like going through this sucks, like, you know, but if you can just stay a little bit ahead of it. It really goes a long way. 

00:26:13 Sabine 

Absolutely. That's wonderful. And is there anything else you want to talk about? This is really a continuation from beyond the story, so I feel like everybody was like, ready to hear from you and like where you are now. 

00:26:27 Carly 

Yeah, I think I just touched on earlier about taking care of oneself, right. And that can be done in so many different ways. Whatever you need to do for yourself, you know, do it. And It took A little longer to really figure out what I needed for myself. At first It was like I really focus on making sure that my parents and my sibling and my friends were OK because I was worried about their mental state. And after a while I was like, I haven't worked enough on myself. Because it was a really daunting task and I'm really good at deflecting. I'm going to put it out there. and so if I could just think about that and not think about myself, I did. So after a while I really had to just kind of be like you need to work on yourself And it's not easy to do. I had a lot of physical challenges after my treatments. I would try to work out. I would try to, you know, go to an exercise class or just walk up the hill of my neighborhood. And I'd come home and I would be in agony. I'd be down for a couple days because my pelvis had just been like, basically rebuilt, you know. And It was really hard for me because my mind was ready, but my body wasn't. So ultimately for me, and this is not for everybody, but I gained a lot of weight during my cancer because I was So immobile. even though I looked In quotations a normal person, I was not anywhere close to normal and I was in a lot of agony. and I couldn't get rid of the weight myself and I had to look in the mirror one day Because I was just getting really down, I was going into that dark side of it Because I was trying I was doing, but I was also older and the body's different, so I actually had gastric sleeve surgery. I had hernias as well after my surgery that were really hard to deal with and extra weight before surgery is not recommended to have. But I spoke to my doctor said I am trying and said it Is no lack of trying here and he actually said maybe you should look into weight loss surgery. And so I did. And unfortunately, the weight in BC is years and years long. So I went to Tijuana, but I had amazing medical care. I highly recommend going down there and it Changed my life For the better, not just physically, but also mentally. Here I am dealing with, you know, a vulvar cancer diagnosis and all that It's done to me. Ostomy life, just pain. And then wait on top of it. I just needed a little bit of a helper. I don't think it's a miracle by any stretch, you Have to do the work. But I'm now here in three years and it's one of the best things I've ever done for myself in so many different ways. 

00:29:13 Sabine 

I'm so happy for you. 

00:29:16 Carly 

So that’s what I needed for myself. Not out of vanity, but for my health. Right, like I needed it. And so I guess whatever anyone has to do, go. Go, girl. Get her done. 

00:29:27 Sabine 

That's a great. I'm very happy for you and where you are now. 

00:29:31 Carly 

Yeah. And it’s not like I'm like I'm skinny Minnie here, I just wanted to be Healthy and athletic, you know, like I didn’t Want to be A size 0 or anything like that, so yeah. 

00:29:41 Sabine 

For sure. Wonderful. Thank you so much, Carly. This was great. I loved speaking with you. 

00:29:49 Carly 

Me too. I'm always willing to talk. I guess I should say to like I have been really struggling for all these years about how to talk about this kind of stuff on social media. You know you Can't let dance in a reel and Show like, hey, I have vulvar cancer. You can't show this type of cancer. You can show the scars From your surgeries But it's not a visible illness or disease is vulvar cancer. So I've really struggled with how to represent it. And I know I need to do better. But it's also about me being a little more vulnerable with with my followers, with my community. But I have found times where I have been more vulnerable that the response has been overwhelming. So my goal for 25 is to do a little bit better at that.  

00:30:39 Sabine 

Yeah. And I'm sure it's gonna go great. You're Very good at it already. Thank you so much this was great. 

00:30:50 Outro 

Thanks for joining us on the Gosh podcast to learn more about the Gynecologic Cancer initiative and our podcast. Make sure to check out our website at Gainey, Cancer, initiative.ca.