Episode 3: If it's just a little bit of cancer, why is it so hard?

In this episode, Nicole shares her journey of being diagnosed with cervical cancer at 33 years old. We chat about how she coped with the news and the struggles she has faced in the last 4 years since completed her cancer treatment. We also touch on the unique challenges young adults face and the continued struggles that can become a theme throughout cancer survivorship. Our hosts dive in so deep, we had spit this episode into two so stay tuned!

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Transcript

Nicole

I was really hard on myself for it because it was like, our joke was “It's just a little bit of cancer” and so it was like, “Well, if it was just a little bit of cancer, why is this so hard right now?”

Introduction

Thanks for listening to the GOSH podcast. Gosh stands for the gynecologic oncology sharing hub, an open space for real and evidence-based discussions on gynecologic cancers. We'll share the stories of gyne cancer patients and survivors and hear from researchers and clinicians who are working behind the scenes to improve treatment outcomes. 

Our podcast is produced and recorded on the traditional, unceded territories of the xʷməθkʷəy̓əm (Musqueam), Sḵwx̱wú7mesh (Squamish), and səl̓ilwətaɁɬ / sel̓íl̓witulh (Tsleil-Waututh) nations. It is produced by the Gynecologic Cancer Initiative, a province wide initiative in British Columbia with the mission to accelerate transformative research and translational practice on the prevention, detection, treatment and survivorship of gynecologic cancers.

Nicole

Hi, I am Nicole Keay.

Stephanie

And I'm Stephanie Lam, 

Nicole 

And you’re listening to the GOSH Podcast 

Stephanie

Today, we have the opportunity to dive into one of our partners and our very own co-host here on the GOSH Podcast, Nicole Keay. So of course, there's no better person to introduce Nicole than Nicole herself, so why don't you just start us off today just by telling us a little bit about yourself and your story?

Nicole

Yeah, absolutely. Stephanie. To start off with, I was diagnosed on March 15th of 2016 with cervical cancer stage 1B1. At the time, I was 33 years old. I had, for probably about a year, been experiencing really bad pelvic pain and regular bleeding. But I really haven't thought too much about it. I had ovarian cysts, right from when I was a teenager. So that type of pain was really normalized to me, I didn't really bat an eye if I started experiencing pain in between periods. It kind of started to get worse and I had also gotten a IUD, that form birth control, and I had the copper one. I had two different types of copper ones. And both of them had been nothing but issues.. I'd had heavier periods, lots of cramping and so I thought, you know, it's either an ovarian cyst, or, you know, it's the IUD. I finally went to see a doctor in the Fall of 2015, because the symptoms just kept getting worse. And I had the copper IUD removed, thinking that that might solve my problems, but they actually got a lot worse and fairly quick. So at the start of 2016, I went into see my doctor, and she was out of town. So they booked me in with a pap with the doctor that was covering for her and he was this really young guy, I think he was fairly new and it was kind of awkward to go in. Anyways, he did the procedure and said that I had an extremely friable cervix, which I had never heard before. So basically, when she touched it with the Q tip they usually use to swab you, it was disintegrating. And, and he could see that, you know, there was bleeding and right off the bat, he said I'm just gonna refer you straight to the gynecology department at VGH, which is amazing. What should have happened is for him to wait for my pap test to come back and then make a decision from there, if it was abnormal to move me forward to the gynecology clinic at VGH. So I'm so grateful that he pushed me right through and I was able to get in to see Dr. Miller at VGH fairly quickly, because my pap came back normal. And so yeah, so chances are, you know, I might have gone longer had he just waited for those results. And then you know, you typically would come back in six months and do a retest and see how it is then which I had done, you know, times before. So thankfully, I got into the clinic fairly quickly and there, I had a LEAP procedure done and then a cone biopsy. And it was shortly after that, that I got the phone call from Dr. Miller. And I remember that day, like it was yesterday. Leading up to it, I knew something was wrong. I just didn't know that it was cancer. But about two days before I got the call from Dr. Miller, my clinic had called me and said they needed to book me in right away and whether I had heard back from VGH yet, and I said no. The MOA on the line was silent, and was kind of flustered and was like, “Oh, they should be following up with you really quickly, and we will book you in anyways.” And I immediately knew something was wrong. Just from her reaction and her response, and it was a Saturday and I remember calling my mom and just being like, “Something's wrong.” And my Mom was like “You don't know. Yeah, you don't know.” And I'm like, “No, mom, just the way she was on the phone. Like, I know something's wrong.” But I would have never guessed that I had cancer.

So, you know, I got the call. And I was at work. And you know, I hear “Nicole, you have cervical cancer”. It was March 15, of 2016 and I just totally blindsided. I think most people probably are when they get that diagnosis. I remember just sitting, I took the call in my boss's office, she wasn't she wasn't there at the time and I just sat there for probably for a good 15-20 minutes just trying to collect myself and I walked out and told my coworkers, I had to go home. I drove home and called my now husband, but he was my boyfriend at the time. And he was actually at the Cancer Agency: his Dad was having his last radiation appointment for his brain cancer. And so we, as you know, as a family, they've been really looking forward to that. And he's been saying, like, “I can't wait to not have to come back here.” And it's like, well, actually, I have cancer.

So we got booked in at the Cancer Agency fairly quickly after that. And that's when I learned it was early stages. So my diagnosis was stage 1B1 so that's like, the last stage you can be in before you move to stage two. And I was told, you know, I was it was caught really early and I was really lucky for that. The recommended treatment was to have surgery. And so they would book me in for that. And it was called a radical trachelectomy, which would remove a portion of the cervix and then I wouldn't need anything further. So, for me, I was 33 years old, I really wanted to have children so my main focus in that first appointment was “what about my fertility?” And, you know, I was told being early stages that, you know, I'd be, I'd be okay: we could do the surgery, I'd still be able to get pregnant and carry a pregnancy, not to full term, I'd probably have to have a C section. But that was really all I needed to hear was, okay, we're good to go. You know, I can still do that, that really important piece that I want for my life. And so I had about a month and then I was booked in to have the surgery. And that went really well. And I was fortunate that it hadn't spread into my lymph nodes. So they were able to continue with the surgery. But it was about 10 days afterwards, that I got a phone call that they were concerned with the margins that they were able to get around the tumor. My understanding was that it was a bit larger than what they had originally expected. And then I had extensive lymphovascular invasion. So you know, it hadn't spread to my lymph nodes, but was, you know, heading that way and so they were concerned about the level of that invasions. My case was taken to case conference or tumor conference, as they called it, reviewed with other Doctors and made a decision on what would be the best course of action moving forward. So the surgeon called back to say, you know, we're recommending that you move forward with radiation and chemotherapy. I went on to do 25 rounds of external beam radiation, and then four rounds of brachytherapy and then five rounds of cisplatin, but the chemotherapy that they typically use just to support the radiation treatment. I finished that in close to the end of September of 2016 and then it's been four years now. Well, coming up to four years that I've finished treatment, and four years since my diagnosis, and so far, so good. No reoccurrence, or anything like that. But it has been an interesting journey for the last four years - a lot of ups and downs. But yeah, that's basically my story in a nutshell.

Stephanie

Wow. Well, how crazy I every single time you tell your story, I'm just so like, it's very touching. And I think, you know, what you mentioned about that first doctor and making that call right away. I think about that a lot and how, thinking about the consequences of that initial referral, and how important that probably was for your diagnosis and everything. And I think, you know, maybe you can speak to a little bit about your journey over the last four years? I think, in the cancer community, we really focus in on the treatment phase and the diagnosis, but I think the survivorship is the part that is really important as well. The last four years is a huge chunk of your life, right?

Nicole

Yeah, absolutely. And at a really, I think pivotal time too. You're coming into your 30’s and you're starting to come into your own even more and getting more settled. Who you are, friendships, career and it was obviously really life changing… cancer at any point is. But it was really, you know, nothing that I could have prepared or expected. I have breast cancer in my family so, you know, in the back of my head, I've always kind of thought that that could be something I may have to go through at a later date. But cervical cancer is not something we typically think about. And not that, you know, I was unaware of it. It was just something that, you know, was not in my view, I didn't know anyone with it. I just hadn't ever put that as something that would happen to me. 

So, you know, the time in treatment, I feel like it was, I don't want to say easier because it wasn't easy at all, but it was just, it's very routine. It becomes very routine, because you have such a full schedule of doctor's appointments and bloodwork and then treatments. And it was easy for me to kind of keep a schedule. And you know, I worked through up until I had surgery, and then I worked after surgery right up until I started my first radiation appointment. So it kind of just flowed through that I had this schedule that I tried to stick to, just to keep some normalcy in my life. And I felt like at that time, it was just really going into autopilot. And I knew what I needed to get done, these were the treatments I had to do. The end goal would be that hopefully I would be cancer free at the end of it and it just came very automatic. Being also young and being early stage as well, that I bounced back really early. I think when you hear that you have cancer, I think our first thought is when we think of cancer is that it is a death sentence. And so after, you know hearing that I was early stage and the stats on you know, survivorship at that stage and at my age, you know, I really shifted my mindset that I was going to come out on the other side of this and set expectations that I was going to be better and be more productive and be a better person. And I really struggled with life after cancer. That first year, I just felt like everything should have gone back to normal. I went back to work within a week, I threw myself into everything, I took on volunteer roles - maybe a little bit trying to avoid what I had just gone through. But just, you know, let's get back to normal, life's got to go on. I wasn't the same person. I wasn't the same person physically at that time. And I was definitely not emotionally. I think there was a lot that I was trying to grapple with and come to terms with, as well as changing in, like, what mattered to me and who I was, and not in the way that I had kind of put pressure on myself to be but just that certain things that I had put a lot of weight on before just didn't hold the same power as they once did. And that was an adjustment in relationships, friendships, family - where I wasn't willing to take some of the things that I had before or just felt a bit different. I also felt like I just didn't have - I struggled to find the same connections that I had had with other people. And so it was the last four years have really been a lot of ups and downs in terms of trying to sort out what that is and, you know, is it that I've changed? Is it that, you know, there's some situational depression going on there just trying to deal with everything. I mean, I think the fertility loss, which I’m sure we can dive into is a huge piece of that. You know, and then early on physically, it was just -  I didn't take it, the impact, really to heart of what my body had been through, you know - major surgery, brachytherapy, you're put out for each time and I had done two rounds of fertility preservation, in addition to the radiation and the chemo. So that was a lot in a very short time frame. And, you know, I thought just being young that I would just bounce back, and I'd be back to my old self, I was really active beforehand. And so, you know, it was a struggle just being me, but not feeling me. 

Stephanie 

Yeah. Yeah, I think I've heard a very similar sentiment, I think, you know, you touch on being a young cancer survivor and a young cancer patient and how that has impacted but also folks who are diagnosed at a relatively early stage. There's a lot of narrative around how the diagnosis at an early stage means that you have a chance at living life again, and that you are able to kind of survive your cancer, but there's not as much support in terms of post treatment and helping people get through that - really tough, both physically and emotionally. Like you mentioned, things that, you know, like no body is really ready to take on.

Nicole

I think that is absolutely true. And I think as well, especially in this area, you typically, and I think I'm not I don't know enough to say to really speak to the statistics. But I think typically, we see cancers in the older population. And I think even when you just look at cancer material, pamphlets or advertisements, you're typically seeing people who are of older generations. Not being represented in that you don't really think of it ahead of time as your reality. But when you go through the treatments, you're also one of the fewer is around your age, right? So I remember being in the elevator going up to a doctor's appointment and a person who worked at the Cancer Agency started just chatting with me, and then asking what department I worked in. And I was like, “Oh, actually, I'm, I'm actually patient and here for treatment.” And it was, you know, just that idea that somebody of my age or who looks like me, probably isn't there as a patient. And so, you know, when you go to wait for radiation, typically, you're seeing people like me support people. I felt a little bit like, because I am younger, and because I'm not the norm and because I'm early stage, my outcome, I'm going to bounce back really quickly, like I said. My outcomes might be different, because I didn't have a mindset that, you know, that I'm not gonna not survive this. But with that, I didn't factor in that this is still major and this is a really big deal. I've spoken about this before, but I coped with it, with my partner with humor. That was really helpful at the time, but I also think I did a bit of a disservice, because I consistently downplayed what was going on. So when I started to struggle, early on out of treatment I was really hard on myself for it. Because it was like, our joke was, “it's just a little bit of cancer.” And so it was like, Well, if it was just a little bit of cancer, why is this so hard right now?

Stephanie

Yeah, I think this is so incredibly interesting, you know, using humor as a coping mechanism. It sounded like it almost caused some sort of dissonance between what you were telling yourself, and then what you ended up feeling emotionally, which caused even more stress and anxiety when it came to dealing and coping with your diagnosis. And I think you also raised a really interesting point about how different people will end up coping with their cancer diagnosis very differently. And that can really impact a patient's journey throughout the treatment phase. But it almost seems like it is magnified even more during the survivorship period. You know, I'm also curious about what other coping strategies you used throughout your journey, you know, what other strategies worked for you, and what ended up being a healthy way for you to cope with this?

Nicole

Mm hmm. The first year out, I signed up for the Ride to Conquer Cancer. And that was really helpful for me that, that having a commitment and having something to work towards, and it meant that I could do something I enjoyed for a really good cause. And then also start giving back to my body in a very small way. And it took time to work up and you're doing short rides, and then you start to get a bit stronger. And so seeing that progression was really positive for me. And then being able to go and complete the ride and meet a variety of people that are there, just out of the goodness of their hearts to support the cause. But also other survivors was just really empowering. And it was really motivating to just be a part of it and really do something to see at the end how amazing the human body is. To go from, you know, having all of that treatment to a point where you know, walking up stairs is so physically demanding to be able to slowly work up to do something like the ride. That mentally, physically and emotionally was a really positive experience for me. And I was able to connect with a few other women who were very similar situations to mine. One of them was cervical cancer, a couple of the others had different types of gynecologic cancers but our experiences and the way we were feeling was very, very similar. Originally, or initially, just towards the end of my treatment, the Cancer Agency had put together a group for us, which was how we were introduced. And unfortunately, they didn't continue with it after a couple meetings, but just having those interactions and being able to connect with other women was also really helpful. I've been able to have conversations that I don't think would benefit me if they happened with friends or family, because there's just a different level of understanding that you have with somebody else who's been through it. So that was also another really positive way that was helpful for me in terms of healing, and moving forward.

Stephanie

Mm hmm. Yeah, I think there's so much power and, you know, sharing experiences, and even just knowing that there's someone there who knows exactly how you might be feeling and have gone through something very similar is very comforting. And in some ways, even though, you know, you may live different lives and have different experiences, but the feeling about it is, is something very unique, 

Nicole 

Yeah. And I think sometimes, you know, there's things that you think and feel that you don't really want a voice to someone else, that it's more comfortable to voice to somebody who knows and feels what you've gone through. There was less fear in sharing some of those thoughts. And then to have somebody be like “Oh, thank goodness, I was feeling the same way”. It's just so validating that I just wish there was a way that more people could connect. And I think, in today's world, we have a lot of opportunities to do that which is great. But it's just like you said, it's really powerful and it can be really positive and really healing.

Stephanie  

If you were to speak to a group of young cancer patients right now, whether they're cervical cancer patients or other types of cancers… What is a key tidbit of wisdom that you would want them to know, going into their own cancer journey?

Nicole 

One of the biggest things and I think this goes to anyone, if you have supportive people around you: friends, family, coworkers, who are willing to help take them up on it. I was very reluctant, and probably a bit closed to that. I never wanted to feel like I was a burden to people. And I would really encourage people to use their support systems for help. That could just be having somebody sit with you. I did have a few people - friends who came and sat with me during chemo, which was really helpful. But you know, if they're willing to cook or they're willing to clean or drive you somewhere or pick something up for you…take them up on it, because I think that really makes a difference. It’s really just supportive for you long term. 

And then the other one is: don't be afraid to ask questions. I feel fortunate that I think I had a decent understanding of health care and how the system works. And even I was intimidated or afraid to ask hard questions or push back and challenge. I think I accepted a lot as you know: well, they're the doctors and they know best when you know. I really felt that maybe I wanted to know more or why couldn't I do it a different way or, you know, whatever those questions might have been, I just I shied away from pushing too hard or asking them. And so that would be one piece of advice I'd have is to really think through what those questions are, write them down, and don't be afraid to ask and then challenge.

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 gynecancerinitiative.ca