A Survivor Story That Will Inspire You to Advocate for Your Own Health

In this episode of What to Know Down Below™, Beverly Wolfer, Executive Director of Tina’s Wish, sits down for an inspiring conversation with ovarian cancer warrior, social worker, and mom Elizabeth Johnston.

Elizabeth shares her journey from fertility treatment to an unexpected diagnosis, the choices she made to protect her health, and how adoption reshaped her definition of family. The episode also explores symptoms, self-advocacy, and the power of support groups.

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Transcript

Welcome And Mission Of Tina’s Wish

SPEAKER_00 0:05

Welcome to What to Know Down Below by Tina's Wish. We're here to empower you with the knowledge and tools you need to advocate for your own gynecologic health. Knowledge is power, and we encourage everyone to join us in learning more about what you need to know down below.

Introducing Elizabeth’s Fertility Journey

IVF Challenges And Concerning Findings

SPEAKER_03 0:23

Hello, my name is Beverly Wolfre, and I'm honored to be a part of the Tina's Wish team. Tina's Wisht is a national not-for-profit that was founded in memory and in honor of the Honorable Tina Brosman, who sadly was diagnosed with ovarian cancer in 2007. Our goal and our mission is to fund scientific research for the early detection and prevention of ovarian cancer, and in addition, we provide education and awareness around gynacologic health. But today I'm really excited to be in conversation with Elizabeth as we talk about her own fertility journey and how it eventually led to ovarian cancer diagnosis, as well as talk a little bit about the fact that she didn't have any of the any signs or symptoms, nor family history, as well as talk about her journey to motherhood. So without any further ado, I'm excited to get into conversation. Can you share a little bit with us about what happened when you went in for fertility treatments or what you thought were going to be fertility treatments, and that eventually led to ovarian cancer diagnosis?

Surgery Surprise And Chemo Plan

SPEAKER_01 1:31

So me and my partner, we were, we wanted to become parents, we were, you know, we needed some help. We saw a fertility doctor, began treatments, everything seemed normal aside from us both having fertility issues. We didn't have very productive cycles, but we did three IVF cycles. I switched reproductive endocrinologists after my first cycle to someone who specialized a little bit more with people who had more challenging cases. And so we were working with him and he was wonderful. We didn't make a lot of embryos, so we were sort of gathering what we had, and then at the point at which we were ready to do our first embryo transfer, my doctor wanted to be as cautious as possible, and you know, so we did an endometrial biopsy, and that came back showing some uh atypical hyperplasia, um, which is I think considered precancerous. Um, and throughout the treatments, I I knew I had endometriosis because of um I'd had an MRI at the beginning of our fertility treatments, and one of the endometriomas I had on one of my ovaries had gotten a lot larger. So at that point he became a little bit more concerned and suggested I have another MRI done, um, which you know showed that that there was maybe a possibility of something malignant. So at that point, he referred me to uh a GYN oncologist. They said it's very un, you know, it's unlikely it's you're young, you have no family history, no known risk factors. Um we'll go in, we'll remove the endometrioma, and then in the procedure, they they can like sample a little part of it and look at it closely, and it did look like one of the endometriomas had um some malignancy, so they removed that ovary completely. You know, my reproductive endocrinologist and my GUN oncologist were sort of collaborating in my care, and so he was very attentive to preserving fertility. So I was I kept my second ovary. Um and then it came back, the pathology came back. Um I think I got the call from my doctor like two days before I turned 39 that it came back. Um showing cancer, and then we made a plan, and I did the six rounds of chemo, that's you know, a typical frontline treatment for ovarian cancer. After that, we decided we're done with my ovaries, so we took the other one out. We had, I think, three or four embryos that we hadn't had a chance to transfer. And so during the chemotherapy, I was also taking hormonal treatment for the uterine issue, and um the uterus looked uh healthy after this, so I transferred the embryos as soon as we could. It didn't, none of them took. Maybe I think six months after I'd finished chemo, I I had a hysterectomy. Yeah.

SPEAKER_03 4:56

Can I go back a little bit? What was that like when you woke up? That you thought you were just having something small removed, and you woke up and found that an ovary had been taken out because I think you now have ovarian cancer.

SPEAKER_01 5:09

I mean I think at the time it was just I was a little bit in dis disbelief. Like I think inside I remember feeling like, are they sure? Did they make a mistake? It didn't, it really didn't seem um it just felt sort of unbelievable to me. Um and then I think as I went through chemo cycle after cycle, it became more sure uh like I I realized that this was happening, but initially it was just I guess a little bit of shock and disbelief.

unknown 5:44

Right.

SPEAKER_03 5:45

And it also seemed like we're in 2025, and like you're a young woman, as you said, you didn't have family history of the disease, you don't even have genetic variants for the disease, and like what had your doctors almost missed along the way yet. We know there is no early detection screen for ovarian cancer.

SPEAKER_02 6:04

Yeah.

SPEAKER_01 6:04

So that's and in this way, I mean I do I feel very lucky because I feel like if I hadn't been monitored so closely, if I weren't going through um these treatments, if my doctor hadn't recommended getting the uterine biopsy, um you know, there are lots of I feel like he was very attentive and you know I feel very lucky because it's not usually caught as early as it was caught with me. Um and that was now this summer, it'll be eight years ago. Wow. So amazing. Congratulations. Thank you.

SPEAKER_03 6:41

One of the things that you've shared though is that you had like this incredible doctor. How did you go about finding this team to support you? And do you have any suggestions for others that might be looking for a doctor or team of doctors for any kind of whether it's a cancer, gynecologic cancer, any other health issues they may be going through?

Missed Symptoms And Self-Advocacy

SPEAKER_01 7:01

I mean, my my RE, my reproductive endocrinologist, was wonderful, and I, you know, I would say the first doctor I had was was was was really good. She was like I I felt she did a fantastic job, but I think when it became clear that I didn't have very productive ovaries and we were having different issues, I I think I looked on Inspire. Um and there it's an online community and there are different groups you can join. And I joined an infertility, one of their infertility chains, and um I came across this doctor there. So there were a number of women with they called it low ovarian reserve and um got to him that way, and he was really phenomenal. And then I think because I trusted him so completely, um I also trusted his recommendation when he connected me with a Chuan oncologist. Um and in hindsight, you know, I know a lot of women who've gone through this have gotten second, sometimes third opinions. And I didn't. I just stuck with my initial, I felt comfortable with my initial doctor. Um it also might have been a little bit of my disbelief at first, and just things move along quickly at the beginning. Sure. Um, but yeah, I felt I felt comfortable. Yeah, I felt like he also involved me, you know, he was very sensitive to the fertility preservation. Um we spoke about the pros and cons. He let me be involved in making the decisions. It was my decision to remove the second ovary. It was his recommendation to have the hysterectomy, but we, you know, I feel like I felt like a collaborator in my care.

SPEAKER_03 8:47

Amazing. Because you don't always hear that, so it's so nice to hear that at least there was some positive piece. So um, if you think back to even before you began your fertility journey, um, was there anything that you can look back on and be like, oh, that seemed different about myself or anything like that? Because one of the challenges we know with ovarian cancer is the lack of early detection testing, like the pap smear detects cervical cancer. Um, but is there anything that you would think about that may have been an indication or that you could share with others to kind of be aware of?

SPEAKER_01 9:24

The short answer for me was no. But I I do think that as I was continuing with the fertility treatments, so I'd always had endometriosis, and I knew my I'd endometriosis in my family. And I've since learned that there are a couple types of ovarian cancer that often begin with endometriosis. I did not know that at the time. Um so that wasn't on my radar, but I will say I've always had you know some discomfort with periods. I could have discomfort when I ovulated. And I remember I'd say for the a few months before my diagnosis, I don't know, maybe three or four months, um, I just started having that discomfort I would get with ovulation, like every day. Oh wow. And I was taking, I mean, I would take Advil probably daily. And I just, you know, I knew they were getting bigger because I was being monitored for the like I knew it had grown in size. And so I just thought, oh, that's the discomfort, but I wasn't even thinking about uh cancer. But I think it's not normal or healthy to be taking Tylenol every day for months. So I think I would be much more hesitant to accept that as a normal thing or something to just look over. And so I yeah, I think I could have, I don't think I mentioned to my doctor that I was having that discomfort or taking.

SPEAKER_03 10:49

Okay. So I hear you're saying is advocating for yourself and things going on for more than a few weeks, like bring it to your doctor's attention to at least let them know that something's different than it was a few months ago. It was different.

SPEAKER_01 11:01

And paying atten paying attention and not sort of just being like, I have you know, I was working just being like, I'll I'll deal with this later. I have work to do, I have things to do in high school.

SPEAKER_03 11:15

Find time for ourselves and self-care. And I always say like self-care is not just by getting manicures and massages, right? It's also making those doctors' appointments and staying on top of our own health where we know we can always find other things to take its place. Yeah. All right, well, thank you for sharing that with us. So we talked a little bit about your healthcare team, which was amazing. Did you have any other support teams in your life to help you get through this journey?

SPEAKER_01 11:42

Um, I mean, I think my my partner was a big support, and he would come to chemos with me, he would take, you know, take care of things. I mean, I was pretty once I learned about you know the rhythm of it, it was but he he was very um supportive and understanding. I did, I didn't know I was young, I didn't know anyone like personally who had gone through what I was going through, but I did have a friend who had a friend, and she connected me to her, and through her and she had breast cancer, and she had connected me to share. Okay. And so I started going to an an in-person support group with them, and I think that was helpful to meet other women. And I was the youngest, but there was another woman there who wasn't that much older than me. Um, and she had young kids, and so we kind of connected and I had a friendship, and it was nice to just be in this group where you could talk about whatever and not have to be worried about other people's feelings, because other people have a lot of feelings about you having you know, my parents had a lot of feelings, my partner had a lot of feelings about it. So it's really nice being in a group where you didn't have to be really worrying about that. My family was supportive. Um, my you know, my parents are close, like physically close, and so they were helpful. My mom would, I think, bring over food, you know, after a chemo cycle. And um I also my work, my workplace was very helpful. So I worked through chemo. I did reduce my hours to part-time, but like they were very accommodating about me moving around my days off to accommodate my chemo treatments, and they were they were great. So I was lucky.

Adoption Path And Becoming A Mom

SPEAKER_03 13:26

Yeah, that's amazing to have such a community of support from all dimensions. So two years ago, we had the privilege of having you and your incredible daughter, Mirabelle, walk in the Tina's Wish runway for research event. Can you tell us? Obviously, when we saw you on the runway, it was this beautiful smiles, beautiful dresses, but I know the journey then to get there, as you've already described, wasn't so straightforward. Can you share a little bit about that journey from fertility treatments, trovarine cancer to finally becoming a mom?

Joys Of Motherhood And Identity

SPEAKER_01 13:57

All right, I will try. Um I was already preparing to become uh a parent and have a kid, and so we we had started that process, and we had always been, I've been can it's it's sometimes hard to think about infertility like IVF treatments and adoption simultaneously, but we had sort of put our feelers out a little bit. It wasn't all in one basket, and so when after we transferred the embryos, I didn't have ovaries, we'd also used up my insurance benefits for IVF. So we kind of switched gears pretty quickly and went towards adoption. So um there was this great adoption conference we attended that was totally overwhelming, but it kind of introduced you to all the different routes you could take and had panels and QA. And I we I remember it was overwhelming but very helpful. And then soon after that we decided, you know, we were ready to try this, and we hired a lawyer, and we completed our home study and made a book, you know, because you have to like sort of like online dating where you make a profile and birth parents get to look at it and choose who they want to raise their child, and um we had a match. We we actually, I was very fortunate. Um that part was also, you know, I feel like it was a lot of emotional roller coasters with the IVF and then the cancer and then adoption, but we were lucky and it didn't take us very long to match with someone. Um yeah, so actually, if our embryo transfer had worked, it would have taken longer. Oh, interesting. Like that, so a year after I finished, my daughter was born. Congratulations. And I was thank you. You know, and we didn't know when she would be due. We got like the call in the morning, you know, get to the hospital. It was near, like we could drive there, which was very cool. Um and I remember we didn't know, I just remember going into like, you know, we were waiting in the cafe, and the the social worker from the adoption agency came down to meet us and was and said, you know, would you like to meet your daughter? And we had no, we were like, oh my god, yes. Wow. And what was that like when you held her in your arms? I mean, I don't know. Like I see pictures and I feel like we just looked so joyful, like it was just, it was just sort of why it was just a wild, happy feeling. I don't know. It was yeah, it was pretty, pretty amazing. And then like unbelievable that you're allowed to like leave the hospital with this tiny little thing. Um yeah, and so that was she's turning seven this July. Wow.

SPEAKER_03 16:53

And has there been a moment um that you've been like just wow, like this is what I was like, what has that motherhood journey been for you, particularly since it certainly was not maybe the vision you had like in your twenties of how you were gonna become a mom?

Leading Support Groups For Survivors

SPEAKER_01 17:10

You know, I I feel like we all do we all have different ways of thinking about these things, and sometimes I can I think I'm I feel fortunate that I didn't have a really like I wasn't someone who was like, I always want to be a mom. I like it's really like I never I didn't I didn't imagine my children. I didn't so I I feel like that maybe that made it a little easier to be flexible about what would happen. Um I feel like now when I see her and I watch her and I look at her, I feel like I mean it's I I I just like I love her. I can't imagine loving anyone any other child more than I love her. I wouldn't I feel like she's better than any child that me and my partner could have made. Like I don't, you know, it feels this I don't um so I I feel like it's fun. It's fun to get to to know her. She's she like becomes more and more of a person with her own likes and talents and personality. Um and so getting to Yeah, become a family with her and get to know her has been really, really fun. Challenging too sometimes, but really fun. Is she one of those purple, pink, sparkly tutu girls? She is like pink and sparkle. And yes, much fancier than me. And that's fun. Right. I've actually gotten a little fancier because of her. I feel like my wardrobe, my wardrobe has well, I'm glad to hear that.

SPEAKER_03 18:52

I'm sorry that we didn't ask you to dress in pink and purple and to spice things up a little bit on set. One of the things that you talked about a little bit earlier that really provided strength for you was some support groups. And I've jokingly said that when I take the train to work in the morning, I sit around and talk with other working moms, and they're like my support group in the morning, and I learned that I'm not the worst mother of the day. I can get through my day. But what I really think sometimes is that, and you described it where you could just be you and not worry about anyone else, and you could really almost normalize what you were going through and to recognize that this was a journey that I'm on, that other people have been on it, and that I can kind of share that. So, can you talk a little bit about the support groups that you've not only been a part of, but I also know that you run for another not for profit organization that's really important called Share?

When To Seek A Support Group

SPEAKER_01 19:47

Yes. So, Share is where they ran the support group I attended in person. And then during COVID, everything moved online. And the facilitator who's you know, I developed a relationship. With and she's wonderful. She and she her co-facilitator could no longer assist her, and she asked me if I would do that. And so I started co-facilitating with her, and then she said, you know, Elizabeth, I think it'd be really helpful if we had a group for younger women, because the the group that we had tends to be old, you know, some demographically people who are getting overeanic cancer are usually a little bit older. Um but there are more and more younger people getting it. Um and I think maybe also like me having going through infertility treatments, maybe getting caught a little bit earlier, other things too seems to be changing. And so we s we s um me and another young woman who was actually in the group with me in person um when we did it, um, are working together now and we co-facilitate that. So I do the original, you know, newly diagnosed group with Andrea, and then we have this other group for younger women that we we open that up to to all gynecological cancers. Um and I think I mean I I volunteer, I do it, I really look forward to it. It um it's something I enjoy. I usually feel really good afterwards. I mean, just I think that there's something like when you're going through these things of just getting to speak freely about what you're thinking, what's going on, sometimes maybe complaining about the Medicare system or the ways in which other people just don't get it, or frustrations that you have. I I think it's it can be a very helpful place to to share those things and feel supported and share resources a lot of times. The women in the group, you know, have really share their experiences, and we all know that everyone's body is different and your experience with treatment is different, but there there's a way in which it's I think very helpful to not feel alone and to realize that other people are doing it. And one of the nice things, these are open groups, so you also have people like who are just recently diagnosed going through treatment and other people who've been out for a couple years, and so you can I f I feel like there's a lot of support that can be provided that way too. And I think a lot of people come back because they also get to feel good about helping out other other people who've were going through something difficult that they get.

SPEAKER_03 22:42

So for anyone who might be listening, who might be recently diagnosed with a cancer, gynecologic cancer, you know, any other disease, is there a time along that journey that you'd recommend they seek out a support group?

Practical Tips For Gyn Health

SPEAKER_01 22:56

I mean, I think anytime. Anytime. I mean, I started going, it was like between my first and second cycle. I found it helpful. But I think we also have people who are years out that are coming. And I think sometimes like the process, sometimes you'll be going through treatment and it's really you can be really focused and you're and you have a next step, and you and then sometimes treatment ends and you're like, oh now I have the existential crisis. Now is when I need the support. And the rest of the world who doesn't understand necessarily because they haven't been through it, might think, oh, you're done. That's wonderful. You know, and and that's when sometimes you start to be like, well, what do I do now? Or like I'm not I don't feel done. Right. So I think that support can be really helpful then and and continuing on because I a lot of people it can be tra I mean it's traumatic. The the effects linger and I mean like it could be physical, but it could be psychological. So I think there's always it's always helpful. I mean, I found, and I know different people have different experiences. Um I think at any point it could be helpful.

SPEAKER_03 24:11

Right. I think that's great advice at any time throughout the journey, and it's never too early or too late to join a group. And I think one of the things we'll do is also drop in, it's both on our website, but we'll drop into the podcast some uh support groups that people could reach out to as well so that they could take advantage of that. I will also just say that I had a friend who was interested, but she actually said to me, I just can't send in that first like email or fill out that form online. And I said, Well, what would happen if I did it for you and put your information? And she was like, Oh, that would be okay. And so I did, yeah. So I had her permission. And she and quite honestly, I she was grateful because it then allowed her to be a part of it. But I get it, it can also be scary and hard and like kind of recognizing that you're on this journey. I just want to ask you if you could um think about, I don't know, one, two, three things that you would want to leave the women who are listening to our podcast with in terms of encouraging them to stay on top of their gynecologic health. What might some of those suggestions be?

Looking Ahead With Hope

SPEAKER_01 25:17

I mean, stay on top of it. Pay it pay attention, I guess. I mean, it's your health, and we like once and need you around, like for yourself or other people. But keep up with appointments. If you're young, if you have daughters, get them vaccinated for HPV. That can help with cervical cancer. If um get your pap smears regularly, see your gynecologist. Um, you know, whether or not you have problems, whether or not you're sexually active, see your gynecologist. And then if something changes, um pay attention and tell tell your doctor. And if you feel like I so in the support groups, I've it it's very common that like the symptoms, especially if you're young, if you don't have the family history, if you don't have, if you don't, if the doctor doesn't think it's likely that you would have one of these, like things get missed and and being persistent is never a bad thing in this situation. Be persistent if you feel like what they're telling you doesn't make sense to you, and you're uh get an get a second opinion, get a third opinion. Um I feel like there's been a lot of people in the groups who, you know, were diagnosed with IBS or diagnosed with told other things and and they they knew something was wrong or were event so just be persistent and advocate for yourself. That's great. Thank you.

SPEAKER_03 26:54

I think I need to remember that too. And maybe just in closing, is there something that you're looking forward to most in life right now, whether as a mom, as a partner, friend, daughter?

Closing Resources And Subscribe

SPEAKER_01 27:09

I mean, I feel like there's it's nice. There's a lot I'm looking for. I feel like I'm I mean it's really fun. So my my daughter's turning seven. I feel like she ch like she keeps changing, and so it's it's I mean, we'll see. I'm sure some of those changes will be harder to deal with. But I even um in my social work, my yes, my uh my internships, I worked a lot with adolescents, and I I do like them. So we'll see we'll see how it is with her. But I mean I'm I'm looking forward to seeing kind of how she grows and changes and who she becomes and getting to have relationships with her at these different stages in her life and me growing and learning from her and changing through that process. I feel like that's exciting. I'll see where I land professionally. I'm looking forward to that. I've also in the last two years, me and my partner have started scuba diving. So I'm looking forward to that too. That's like a new thing I would never have thought I'd be doing. But it's, you know, something well, Elizabeth, I just want to say thank you.

SPEAKER_03 28:16

You've been so honest in sharing really such a challenging journey. Um and yet it just sounds like you've had such resilience and such belief in that things were going to turn out the way you wanted them to, but it obviously took a lot of hard work and advocacy on your own behalf. And so I just really thank you for sharing that journey with us. And I kind of feel like I want to ask you, can we like do a part two in like 12 to 18 months? Because I also think your life experiences are going to play and have such an important impact on whatever you decide to do professionally and how you're going to be able to impact others through their journeys. And like I always tell people, you're always just kind of filling your professional toolkit. But I think you not only have like an incredible professional toolkit, you also have such a robust and genuine personal toolkit that is going to really change the lives of other people. So thank you for deciding to do this and um for sharing your story with all of us today.

unknown 29:23

Thank you.

SPEAKER_00 29:26

For more information about gynecologic health, visit Tina'swish.org slash what to know. That's Tina'swish.org slash W H A T T O K N O W. And like, follow, or subscribe wherever you listen to your favorite podcasts.