Season 4 Episode 1: Navigating Endometrial Cancer: A Mother-Daughter Perspective

GOSH Podcast survey:
https://ubc.ca1.qualtrics.com/jfe/form/SV_9vJ2Jt3Mr6OPJBk 

Welcome to the first episode marking the 4th season of the GOSH podcast! We are excited to share with you more fascinating discussions with researchers and physicians, and inspiring patient stories. 

Today we have the founders of Down there aware(or DTA in short) podcast which was launched in 2020 to propagate a real and relevant discussion about women’s health. Meet Alex Massey who with her mother Mary co-founded and host Down there aware podcast. Alex was born and raised in Florida and currently resides in the capitol city, Tallahassee, with her perfect pooch, Sadie Mae. At the age of 32, she was diagnosed with endometrial cancer. Her journey with gynecologic cancer motivated her to become an Women's Health advocate and encourage women to be aware of their bodies and become their own best health advocate.  

Meet Alex’s mom, Mary Massey is the co-founder of DTA and a retired, career teacher. She began her career as a music teacher and, after earning masters and doctoral degrees, she wrapped up her teaching career as a college professor, training future teachers. Having experienced several serious, and some unusual, medical issues, personally, and through her family members, Mary has developed a keen interest in all things medical, researching and delving deeply into causes, treatments, and outcomes of various health issues. Her incentive to become involved in DTA was to support Alex after her cancer diagnosis and to help inform, educate, and advocate for other young women.  

Down There Aware website - https://www.downthereaware.com/  

Down There Aware episode: Alex’s Cancer Story - https://www.downthereaware.com/podcast/episode/f4e3dd31/my-cancer-story  

Down There Aware episode: A Mother's Perspective - https://www.downthereaware.com/podcast/episode/2bced4d9/a-mothers-perspective 

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For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at info@gynecancerinitiative.ca  
 
Where to learn more about us:  
 
Twitter – @GCI_Cluster 
 
Instagram – @gynecancerinitiative 
 
Facebook – facebook.com/gynecancerinitiative

Transcript

Speakers: Stephanie, Alex, Mary 

00:00:21 Stephanie 

Welcome back everyone to the first episode marking the 4th season of The GOSH podcast. We are very excited to share with you more some fascinating discussions with researchers, physicians and also patient and advocacy stories.  

Today we have two very special guests joining us today. We have the founders of Down There Aware podcast which was launched in 2020 to propagate a real and relevant discussion about Women's Health. Meet Alex Massey, who with her mother Mary co-founded and host down their aware podcast. Alex was born and raised in Florida and currently resides in the capital city Tallahassee with her perfect pooch, Sadie Mae. At the age of 32, she was diagnosed with endometrial cancer and her journey with gynecologic cancer motivated her to become a Women's Health advocate and encourage women to be aware of their bodies and become their own best health advocate.  

We’ll also be meeting Mary Alex's mom Mary Massey, who is also the co-founder of DTA and a retired career teacher. She began her career as a music teacher and after earning masters and doctoral degrees, she wrapped up her teaching career as a college professor, training future teachers, having experienced several serious and some unusual medical issues personally and through her family members, Mary has developed the keen interest in all things medical, researching and delving deeply into causes, treatments and outcomes of various health issues. Her incentive to become involved in DTA was to support Alex, after her cancer diagnosis and to help inform, educate, and advocate for other young women. 

Thank you both so much for joining us today on this episode. Thanks for. 

00:02:07 Mary 

Thank you. 

00:02:09 Stephanie 

OK, great. So to start us off, Alex, would you be able to start us off and just tell us a little bit about yourself and your cancer journey? 

00:02:18 Alex 

Sure! So like you said, I was born and raised in Florida and I've lived in Tallahassee for about the last 20 years or so. And I have always from the time I started my period really early. I've always had really heavy irregular, just kind of unusual periods. And I was told that it was normal, that it was familial history. I was overweight, so that was a contributing factor and was very quickly put on birth control. And so I was on birth control for several years and then it just kind of got to a breaking point. I was in my 30s and I went to my General practitioner Doctor and he said, you know, I'm a little concerned about this “You're anemic”. We started me on iron pills. It was starting to become a health concern. And so he sent me to a bleeding specialist gynecologist and he said “You know, you're so young. This is probably fibroids, this is nothing serious to be worried about. We'll do a D&C (Dilation and curettage (D&C) is a procedure to remove tissue from inside your uterus). Clean y'all out and you'll be good to go” So I had no reason not to believe him, and so I did the D&C.  

While I was on a work trip, I got a phone call that it was cancer. And so I canceled the rest of the trip and I flew home and talked to the pedagogic oncologist pretty quickly. Just a couple of days later and a week after my diagnosis, I had a full hysterectomy. They did save my ovaries to prevent early menopause, which I'm appreciative of. And it was caught pretty early. It was stage one, grade one and so the hysterectomy was all of the treatment I needed. And so, since July of 2019, I have had no evidence of disease and under surveillance they call it. So in the first couple of years is every three months and then now we're on to every six months. And so that's what kind of kick started everything and it was a shock to say the least. But yeah, that's just kind of the overview. 

00:04:23 Stephanie 

Wow, that must have been a bit of a journey whirlwind of a work trip and imagine how kind of overwhelming that experience must have been for yourself, Alex. 

00:04:35 Alex 

Yeah, it really was. And it would be the lesson I learned from that is the very last thing at the end of all the documents you're signing and checking and whatever when you go visit a new Doctor, they say “Can we leave a detailed message or can we, you know, call you with detailed information” and I now mark 'No’ because I would just like them to call me and say we need to talk and then be able to set it up instead of surprising me. So that's something that I never would have thought of. But you know, when you give that permission, they can call you and tell you anything 

00:05:06 Stephanie 

Wow. So they actually left a voice message. 

00:05:12 Alex 

I happened to pick up. I did have pick up, but I was. Driving and you know it was. Yeah, it was very. It was just a kind of a surreal experience and so pulled over to be safe and talked to the guy through everything, but I, you know, once you hear the word cancer it. Just kind of. I don't hear anything after that, you know? And my doctor happened to be out of town that week. It was in July. So he was on vacation or something. And so like a tech from the lab called who I didn't know. And he was nice enough. But you know, you don't have that personal connection. So yeah, I t was an interesting way to receive that news. 

00:05:49 Stephanie 

Yeah. No, definitely. How about yourself, Mary? What was your experience like when you heard the news of Alex's diagnosis? 

00:05:59 Mary 

Well, you know Alex was on the work trip and my husband and I had just sat down for dinner and the phone rang and I saw it was Alex and you know, she calls on trips and lets me know how it's going and that kind of thing. So I didn't think much about it. But I said hello. And she was sobbing. I couldn't even understand her. And finally, she got the words out. I have cancer, which was a complete shock. Totally was not on our radar. In fact, I kind of forgotten about her D&C because when the doctor came out to tell me he was finished. He showed me some of the films and he said she's too young to have endometrial cancer. I'm not worried about it. I'm going to because of protocol, send it to pathology. But this is nothing to worry about. And so it was not on my mind at all. And uh so my instinct was just to say you need to come home. She still had things she was supposed to be doing on the work trip, and she was trying to decide how she can leave early and get on home and I just kept saying you need to come home. Because I knew talking over the phone wasn't the way to deal with it. 

00:07:22 Stephanie 

Yeah. Yeah, no. Absolutely the face to face connection is so needed in these sorts of situation. Alex, do you mind sharing a little bit more about you mentioned that you had your hysterectomy and that you've now been on surveillance for several years. What has that process of being on surveillance after getting your hysterectomy? What does that process and that journey been like for you? 

00:07:50 Alex 

So the protocol for, you know, my diagnosis was after my hysterectomy, I saw my practitioner who actually left the practice. So I saw a new Doctor immediately after, and that was every three months, and I had a regular scans. So I had CT scans and if they lit up, they say or if you know, if anything kind of showed weird they would do a follow up scan either an MRI or I had a couple pet scans along the way and they've never found anything in that time, but it's always like, well, that's a little strange We're just going to investigate further. So along with the scans, I have an exam, a physical exam and so for the first two years that was every three months. And then for the last three years of that five year chunk that they are really looking at you. It was every six months and before that doctor's visit, they just do a blood work. They check. What's the name of that? CA the CA-125 marker, it's a hormone marker that can indicate a higher level of estrogen, which can indicate cancer, but it's interesting. The first this is the first time I've heard this, but I just had my four year check up a couple weeks ago and the doctor said, you know, we can keep on with these blood tests. But the range is really wide, so you know when I had cancer my marker was up 45 and then it dropped. And now I've kind of hovered between 12 and 15 and that's pretty normal. But she said she's had patients who don't have cancer and their normal number is 200. So it's a wide range and so. But they do take it and they test it and just to kind of see a trend if it works but between the blood tests. The CT scans and then a physical examination regularly, though that's really my protocol. And so I was very fortunate they caught it really early. I didn't have to have any chemotherapy or radiation therapy or brachytherapy. And so you know, in that way, I was fortunate and so. It's been almost just like, OK, I'm ready to be done with it. Right. Like how quickly five years can get here, but thankfully it's been unremarkable the whole time. 

00:10:20 Stephanie 

I'm so glad to hear that. You're doing well and congratulations on the four year mark, yeah. So obviously I think navigating a cancer diagnosis at any time is very challenging, but even more so, I think when you are navigating that diagnosis at a younger age has comes with many different challenges, both physically, mentally as well as emotionally. I'm curious if you have anything in particular that. Do you think you would want people to know about young cancer patients? 

00:10:55 Alex 

Well, and in particular with gynecologic cancers, that can affect your reproduction and your fertility. You know, I would want people to know that it, you know. Yes, I was very fortunate. You can cut the cancer out and it's gone and there's no evidence of. But I can't have children. I didn't have children before. That was actually a risk factor for getting uterine cancer. Who knew? It's like a use it or lose it. You don't have kids. You're at a higher risk and so it affects so much outside of just the cancer and the treatment. And you know that I was 32 and I had friends having babies and you know, so it hit a little bit differently in that it's taken a long time to be comfortable with that. But I focus on sharing the joy that I get to be the aunt to all of my wonderful friends’ kids. And so that I can have that in my life and I hope to adopt one day and you know, and to find motherhood in a different way. And so I think that just remembering that, you know, not all cancer patients are old or losing their hair or, you know, I went to work pretty quickly after my because it my surgery was laparoscopic and so there, you know was healing but it didn't. It didn't put me out for weeks and weeks and so. It doesn't always show right the pain and the effects of the cancer doesn't necessarily show outwardly, and so just to be aware that, you know people are going through things that they might not talk about or might not just show on the outside. 

00:12:44 Stephanie 

Yeah. No, thank you for sharing that and I think we talked a lot on this podcast with Nicole because she also was diagnosed at a relatively young age and she talks a lot about how you can't always see cancer. There and go those kind of impacts are very far reaching and can show up in many different ways and can suddenly pop up every now and then when you don't want it to. So thank you so much for sharing that and Mary coming to yourself, I'm curious a little bit about what your role was in supporting Alex throughout her cancer journey and has that progressed or changed throughout the different stages of the journey? 

00:13:30 Mary 

Well, I think initially. Certainly on the phone call, my role was to try to calm her down that immediate need. But once she got here and we started, we had to communicate very specifically because we were in territory neither of us had been in and she said to me early on, she said, you know, this is my story, I need to tell it when I'm ready and to whom I'm ready and I said I get that. But I'm your mother and I need my tribe as well, so we need to figure it out together and communicate with each other. So we both get what we need in the process and I think that's hard as a caregiver because it's all about the patient and you want to put the focus on the patient. So the patients taking care of. But there is collateral damage and I think it's important to have good, open, honest conversations so you can kind of navigate your way through that. Alex has her own house, but after surgery she recovered at my house. It was easier for both of us, really. She has an 80 pound dog and so she needed help with Sadie and so it just worked out that she stayed with us for her initial recovery. And my role really has been since then when she asked me to Co-host the podcast, I said, you know, that is not in my wheelhouse. But I'll do it. And you know, just I want to be a support for her because she is the one who's going through it. And I think she turned it into something as positive as she could, wanting to get the word out to other young women that you can't just look at the data and how endometrial and uterine cancer is primarily a post menopausal cancer. You can't just look at that because certainly and we've spoken to other oncologists who tell us more and more young women are being diagnosed with endometrial and uterine cancer. So it's something that we all need to be aware of. And that's why Alex wanted to start the podcast. 

00:16:08 Stephanie 

No, that's amazing. Thank you for sharing that. And I think you touched on a little bit about one of the questions that I had. Around mental health and kind of support for yourself as a parent, helping your child navigate such a tough journey. So thank you for kind of sharing a little bit about how the both of you navigated that throughout the process and thank you also for sharing a little bit more about the podcast. Umm, I think that's the next kind of area that I would love to chat more with the both of you about. Alex, I think we talked a little bit before we started recording, but why don't you share a little bit about what motivated you to start Down There Ware. 

00:16:55 Alex 

So you know immediately after diagnosis and surgery and recovery which felt like a whirlwind, you know? It was a week from diagnosis to treatment and you know, so in the weeks and months after that. I really just started to get frustrated and angry that no one told me that this was a possibility. No one said, hey, you have this symptom, you have this experience in your life. You probably maybe could end up having this kind of cancer it's not 100% preventable, but you could change your lifestyle in this way, or you could be more aware of catching an early kind of thing and I just wanted to like, get the word out. You know, I had joined a Facebook group, actually the day I was diagnosed, I couldn't sleep that night and after I had watched all kinds of YouTube videos about peoples journeys and stuff and it really just was kind of depressing and I didn't know what my journey was right. I didn't know. Like how far it was going to go or anything. And so I just started searching like, are there other people out there who aren't post menopausal. Who are dealing with this and there are there's a whole community of women who have been diagnosed with uterine cancer before menopause. And so I connected with them and I really just, I wanted to do more and I am a bit of a go get her a do or I just wanted to to do more and so. Put our heads together and thought, well, what how can we get the word out right? Like how can we really make an impact? And in this day and age, a podcast was pretty easy to put together. It's pretty cheap. I you know, I have a background in media editing and music editing and so I was like. I probably can do that like that's not that hard, right? And so after couple weeks of researching and putting it together and the fun part of, you know, picking out the name and you know, designing your logo and all that stuff.  We got really excited about it and we launched February of 2020. So just a few months after my surgery and then about a month later the world shut down. And so honestly, I think I don't know how my pandemic would have gone if I didn't have the podcast .Because You know, we're so isolated and you know, I isolated with my parents separate houses, but we, you know, could come and go between our ourselves. I was working from home full time after you know, the shut shutdowns and all. And so we had that time to be able to be intentionally together. You know, I think it could caused more of “no, I'll just be by myself like don't worry about it”. Whatever. But we had a mission. We had work we wanted to do and with technology we were able to connect with people during the pandemic, we were able to have zoom interviews. And so that was really a neat experience and you know, to have it start when it did. You know, was just serendipitous that it all worked out that way, but yeah. We're grateful, I think for it. 

00:20:20 Stephanie  

No, that's amazing. It gives a reason for people to come together and connect. And I think similarly to the both of you, we actually started this podcast in the midst of the pandemic. So October 2020 and I would totally agree with you that it kind of gave us an opportunity just to connect. And just to kind of be more you know, expand our network when it's so hard to kind of do that during the pandemic, what are what are you doing now in terms of advocacy, how has down there aware grown over the last couple of years? 

00:20:58 Alex 

Yeah, so after three seasons of the podcast, we took a break for the holidays in the winter and we're thinking, what's next? You know, the podcast is great. We want to keep doing it. We want to keep having guests. We want to keep sharing stories, talking about difficult topics, sharing research, all of. But we just felt like we could make a bigger impact and so I have a degree in nonprofit management and I was like, I'm kind of not using this right now let me dig up my school books. Let's figure this out. And how can we create a nonprofit that can make an impact locally in our community? And so we got all the paperwork, all of that over the holidays and were approved in January of this year. And so now we are hitting the ground running with project ideas and reaching out to companies to partner with us and really to make a tangible impact across our Community and you know really with all of our listeners and trying to spread the word because it's such an important topic. And I'm really passionate about making sure that women don't have to go through what I did and making sure that they have a choice in you know how their health progresses and that they have questions to ask their doctor. And if you might not have cancer, you probably don't, but if you have these symptoms, at least know how to ask about it and how to bring it up to your doctor and talk about it. And so we just want to empower and advocate for people. 

00:22:28 Stephanie 

No, that's amazing. I'm so glad to hear that it's expanded and grown over the last couple of years. Alex, you mentioned or sorry, Mary, you mentioned a little about the reason that you kind of jumped onto the ship and started to Co-host this podcast with Alex. How has that experience been over the last couple of years? For yourself, as you guys are now branching off into the nonprofit sector? And how has that impacted kind of your relationship with Alex? 

00:22:59 Mary 

Well, Alex and I have always been close. We've always had a good relationship, but I think we've grown to communicate better. We share, we found we're a lot, a lot alike, much to her chagrin sometimes I think, but we really have learned how to communicate with each other. We've I think worked at kind of listening more and better with each other so that we can have we can have an impact on the podcast and the things we're trying to discuss and help each other narrow down what we actually want to say, and so it I think it's been really a great tool for bringing us closer together. 

00:23:54 Stephanie 

That's amazing. Great. Thank you. OK .So just to wrap up the episode, I, I'd love to kind of wrap off with some of your final thoughts on the whole journey of navigating the cancer diagnosis as well as doing all of this advocacy work that you guys are doing right now. Mary, if there was one thing that you would like to tell. Someone who has a loved one going through this journey of a gynecologic cancer, what would you say to them? 

00:24:27 Mary 

Well, it's hard to name one thing. I think the one general thing is to be supportive, but that's for people like me, the moms, the friends that you know, I think that patient learning to be an advocate for themselves is paramount. And the person who's supporting them can help by encouraging that and encouraging questions when they go to the doctor, even offering to go to the doctor with them because it's so important to have another set of eyes and ears with you. And I think that was kind of a hurdle Alex and I had to get over. I mean, she's a grown up and, you know, she didn't need her mommy to tag along. But I tried to help her understand somebody else being there is important because it's hard to get all the information and retain it and just having another person there didn't have to be me. But I preferred. It was me. And she can speak to that. But I think, you know, she finally understood. It wasn't that she was dragging her mommy along. She's a grown up. So I and I think having your own tribe, you know, having your own support system is important as well. That's as important as the medical treatment. 

00:25:58 Stephanie 

Yeah, yeah, no, absolutely. Alex, I'm curious now, what was that experience like about the processing that you had to do? 

00:26:06 Alex 

Yeah, well I would say you know, I don't have any regrets about my treatment plan about how I progressed through my diagnosis. But if I could go back and change one thing, I would pause and breathe. I felt hurried, I felt a sense of urgency. I felt you know, I wanted the cancer out of my body however, I didn't want it there anymore. And you know, I went to one doctor. I had one appointment with that doctor, and then I had the surgery. And so again, I don't regret that decision, but looking back, I do wish I had said thank you for your opinion I'm gonna go talk to somebody else because I just want as much information as possible. And so there are some cancers that are so aggressive you really don't have that time. But I uterine cancer, it's pretty slow growing, so taking a couple of weeks and talking to someone else would not have changed the outcome likely and so that's what I would say not only to breathe, but figure out that it's OK to ask questions of your doctor. It's OK, like you're not going to offend them, and if you do it doesn't matter. Ask the hard questions, Ask what you care about and don't be afraid to politely and respectfully, you know, bring up topics because it's your body, it's your life, and yes, they're an expert. But you're an expert in you. You're an expert in your body, how it behaves. They've known you for a split second in comparison to how long you've known yourself. And so to be your best at it, you really have to take the time slow down and ask the questions and formulate those. And don't be afraid to stand up for yourself. I've never had a doctor when I've asked a hard question or pushed back a little bit or said something to throw their hands up and walk out the door, or to be upset with me. Right, like they just respond. As you think they would like. OK, let's talk about this and so don't be afraid to advocate for. 

00:28:26 Stephanie 

Thank you. Alex, I was gonna ask you if you had any last words, but I think you so eloquently articulated that, and I think that message is so important. And I'm definitely seeing how it kind of transcends throughout all the advocacy work that you and the both of you are doing. So thank you so much for kind of that final message. So for our listeners today, we will definitely be including episodes from Down There Aware and all of the other amazing work that they are doing in our show notes. So please feel free to check that out and support Down There Aware and all of the amazing work that they are doing in this area. 

Thank you both so much for joining us today on the podcast and for sharing your story. And thank you for all of the advocacy work that you guys are doing. I think it's absolutely amazing and so needed and filling such a big gap in our society and our community overall. 

00:29:25 Alex 

Well, thank you so much for having us appreciate it. 

00:29:28 Stephanie 

Thank you.