At the recent American Society of Clinical Oncology (ASCO) Annual Meeting, Megan-Claire Chase, breast cancer survivor and Breast Cancer Program Director at SHARE Cancer Support, sat down with Oncology Data Advisor to talk about her diagnosis, treatment, and survivorship journey, as well as her advocacy work to empower people living with cancer.

This podcast episode was recorded live at the 2022 ASCO Annual Meeting in Chicago by Oncology Data Advisor and ConveyMed. 

I had a difficult time being heard. I was dismissed a lot, because I am a Black woman. Also, I was under 40 and I had strange symptoms that I knew were not right. My hair, which used to be bone straight to my shoulders, started falling out on the left side. I'm like, "What is happening?" Even my stylist was like, "Are you missing a nutrient?" Then I started getting tiny green bruises on my lower left leg. I'm thinking, "Oh my God, it's leukemia." But then I was like, "Okay, wait a minute. I'm right-handed, right dominant." All of these things were going on in my head. I was like, "Something's not right."

Then I got, what I was told by a dermatologist, was a zit on the outside of my left breast. I'm like, "I've never had that before, are you sure that's a zit?" She's like, "Yeah, here's some cream, it'll go away in three days." And it went away in three days, and there was no pain. I'd also gained a bunch of weight. I used to be fit. I grew up dancing. I was a cheerleader in the college days, and all of a sudden, I'm heavy. None of the doctors, I realize, ever said, "Is this is normal?" Not one ever asked that. I just kept going to the doctor. This is over a two-year period, by the way.

Then I got a bruise that was in a circular shape on the back of my left arm. By this point, my primary was like, "Okay, obviously, something's going on." I'm like, "Yes, thanks." But no one really knew, because I kept doing blood tests. No one thought to do a mammogram, because I was able to get a preventative one at 35, because of the ovarian cancer history. But they were like, "It's clear, come back when you're 40." I was like, "Great, peace out."

Then it wasn't until I was in the shower—I remember this distinctly, because I was watching Super Girl and I could hear that in the background. Because of the weight gain, my breasts got really big. So, I was always feeling them. And I'm like, "What is this?" Out of nowhere was this huge thickness. It was as hard as a rock, and it was huge. It came out of nowhere and I was like, "What is this?" I remember calling the next day to my primary. They were like, "Yeah, we can't get you in for another two weeks." I could just hear my Nana, who was a registered nurse—she was already passed away—she was like, "This is your time to get pushy." And I got pushy, and I was like, "I need to talk to someone right now."

And I did. The PA was like, "Let me find your primary." I get a call. My primary is like, "Okay, I've written an order for a diagnostic mammogram." I'm like, "A what? Wait, what is that? What?" So, everything moved really quickly. Now, when I went and got my biopsy, I knew it was a mass. I was like, "That sucker's too big to be some lump." I wasn't surprised by that. I distinctly remember this date, because it was on a Friday, and I purposely wanted something on a Friday afternoon. It was 9/11/2015. That's why that is ingrained in my brain. She told me she was only going to take eight to 10 tissue samples, and she took 20. I knew, I just knew something was wrong, but I never thought breast cancer.

At the time, I was working in radio, and so I'm highly aware of the time. I'm always looking at the time, because I was listening to a commercial, and I was timing it. Now, I had that biopsy on Friday. Well, they told me I wouldn't hear anything, probably until Tuesday or Wednesday. So, I'm literally not thinking anything on a Monday at 3:05 PM. And I'm in Atlanta, Georgia. You might hear a little accent going. I almost didn't answer the phone, because a stranger's calling me—I'm not going to answer it. But my gut said, "Answer the phone." That's why I remember the time so well. I heard the doctor, and I was like, "What?" I'm a little dramatic. I was like, "Let me run to a conference room." And that is when I could run.

She goes, "You have invasive lobular breast cancer." I was like, "Wait, what?" And then I started to get hysterical. She just snapped me out of it by saying, "I need you to go get a pen and paper and take down some information right now." That just snapped me back. So, I go running back, because, again, I'm dramatic. They're all like, "MC"—which is one of my nicknames—"MC, what are you doing?" And I was like, "No, no, no." I run back, and she had already spoken with my primary. They had a list of oncologists, a breast cancer surgeon, a plastic surgeon. I'm like, "What do I need a plastic surgeon for?" Nothing was processing. I immediately call my mother and my mother's like, "Can you call and make these appointments?"

I get diagnosed on a Monday. I am meeting with my new oncologist on a Tuesday, my breast cancer surgeon on a Wednesday, my plastic surgeon on a Thursday. This was all happening really fast. Then we fast-forward to 16 rounds of chemo. We fast-forward to one blood transfusion—which, believe it or not, I was really stoked about the blood transfusion—because for some reason I always thought I had O and I was like, "Oh, I am B+. I'm special. I get special blood." And then I looked like Bella from Twilight, because I was like, "Whoa, my eyes are red." So, I had to have some fun—I had to keep my sense of humor.

But then I had my surgeries, and I went with a lumpectomy. I've been surgery-shamed in the breast cancer community for just getting a lumpectomy, and also by people outside of cancer-land saying that too. I'm just like, "Okay, you do know that a lumpectomy with radiation is the equivalent of a mastectomy?" Again, it's a private, personal choice.

By that point, I'd had 33 radiation treatments. Let me just tell you this, any doctor that tells you, "Oh, I've seen worse"—my flesh burned off. I now know what a burn victim feels like. it actually burned up the side of my neck through my back. I'm just crying, I'm screaming. I'm like, "Oh my God, my flesh burned off." "Oh, I've seen worse." And I said, "Well, you know what? I haven't." So, this problem, I'm really still traumatized by that. I have scars, burn scars, and I made it through that.

I really thought that survivorship would be different, because all you ever see are the smiling faces, people high-fiving and wearing pink tutus. Now keep in mind, I had pink tutus and butterfly wings and tiaras before all this breast cancer nonsense. So I thought that's what I was going to expect. I remember my oncologist said, "You might feel a little depression after this, because you won't be seeing the doctors as much." A little depression? We don't talk about the mental health side. We don't talk about the grief. I lost my fertility—so much was happening—I lost my career, and I realized that no one's talking about this. I'm a talker, obviously. I realized I can't verbalize this, so I'm going to start writing. I started writing my blog, Life on the Cancer Train, and it really just helped me keep my mental health in check.

I was just hoping maybe two other people would read it, not just my besties. And it really took off, because I don't just write about the happiness. Yes, I do have some happiness, and amazing things like sitting here with you are happening, but I'm also highly aware that we don't talk about the rage. We don't talk about the loss on so many levels—loss of body parts, loss of career, loss of feeling sexy, even. I started writing about that in a really raw and authentic way, with my humor. It seems to really resonate with not just women, but men as well, and trans and non-binary people. It's just been really lovely to see that connection, because it might be different cancers, but we all have some similar things that happen throughout the cancer path.

But here I am now at my first ASCO. What?! I really decided to make the change and do more advocacy work. After I left the TV and radio space, I went into marketing, but I was doing so much volunteer advocacy stuff. I started making a name for myself through my writing. I was like, imagine what I could do if I could work in the cancer space full time. Lo and behold, here I am now at ASCO as the Breast Cancer Program Director at SHARE Cancer Support.

Oncology Data Advisor: Amazing, you have such an incredible story. Thank you so much for sharing it with us. So, tell us more about SHARE Cancer Support. What work do you do?

Ms. Chase: It's been really exciting. They are based in New York City; I'm the lone Georgia girl. I'm in Atlanta, so I work remotely. But we have educational and support services for all of the female cancers. So that is breast cancer, early-stage metastatic breast cancer, uterine, cervical, and ovarian. We also have what is called LatinaSHARE, for the Hispanic and Latina community. We also have Japanese SHARE, which has been around for a few years. We are starting a Chinese SHARE, as well.

What's great about SHARE Cancer Support is there's a lot of boots-on-the-ground work. We have ambassadors in the Black community and the Hispanic and Latino community that go out to food pantries, that go out to health fairs, to really try and reach those historically excluded communities to say, "Hey, we hope that you get your screening. Here is the right information on why you should do it and why you should stay on top of it." Of course, especially in the breast cancer space, the Black community was really hit very hard, though I did not have triple-negative breast cancer, which is what is prevalent in the Black community. We need more people to be aware of it.

We also need men to be aware of it too, because men can get breast cancer too. Also, you do know someone—you know a woman at one point or another, either you or someone else you know, who is going to be touched by one of these cancers eventually. We work really hard on educating and having the current information, the latest research. And then they bring me on board, and I'm going to shake things up a little bit, because I'm a little dramatic. But I want to incorporate different segments, because not everyone is ready to hear research and understand mutations. I want to break it down a little bit and do things on some different platforms, where we're really talking with the communities and not at the communities.

I really just love that we work hard on that education piece, but I'm also excited to have SHARE Cancer Support say, "You know what, Megan-Claire? Shake it up. Try some new stuff. We want to see what can happen." Even though I'm remote, I feel like I'm so part of the team. One of the things that we are discussing here at ASCO—and this is a big deal, y'all—we have a health disparities conference. It's virtual, June 24th. Our keynote speaker is none other than Stacey Abrams, who's running for Governor of Georgia. And guess what my CEO asked me yesterday. She goes, "I want to ask you something. I need you to do something." I'm thinking, "Oh my gosh, do I have to go to a dinner by myself? What's happening?" And she goes, "We would like you to introduce Stacey Abrams. And I said, "What? Oh, my God." I'm just beyond stoked.

But more importantly, we all know that health disparities are a problem, right? But we're not just going to keep talking and talking about it. We are going to have some action to make some impact. We're going to be broken out by the different races to talk about where we're seeing the holes, and then all come together and talk and say, "Okay, here's where I think we can make some really impactful steps and move forward." So, I am pleased as punch to just be here at ASCO. I'm pleased as punch about this conference that we're having and that I'm going to be introducing Stacey Abrams from my hometown of Atlanta, Georgia.

Oncology Data Advisor: That's so exciting. It sounds like such a wonderful organization doing a lot of really great work.

Ms. Chase: It is.

Oncology Data Advisor: So, I guess my last question would be, if there was one thing that you would hope that attendees here at ASCO would know about breast cancer from a patient perspective, what would it be?

Ms. Chase: That the journey is never over. What's been really exciting is to be able to talk as not only a professional in this space, but also from the patient lens, and say how important our patient voice is. I've been able to connect with a lot of doctors and researchers and medical students, even. I'm saying, "Make sure that you see us and make sure that you understand that." Just because we enter the survivorship stage does not mean it is over. Believe us when we tell you that we are in pain or we're having rare side effects. Really listen to us, because we need help to keep us moving forward.

Oncology Data Advisor: Absolutely. Well, thank you so much for all of this, and congratulations on being at your first ASCO. It's very exciting.

Ms. Chase: Thank you.

Thank you for listening to this podcast recorded live at the 2022 ASCO Annual Meeting by Oncology Data Advisor and ConveyMed. For more expert perspectives on the latest in cancer research and treatment. Be sure to subscribe to the podcast at conveymed.io and oncdata.com. Don't forget to follow us on social media for news, exclusive interviews, and more.

About Megan-Claire Chase

Megan-Claire Chase is the Breast Cancer Program Director for SHARE Cancer Support, a nonprofit organization that seeks to empower women with cancer by providing public education and support for patients and survivors. As a 5-year survivor of stage IIA invasive lobular breast cancer, Ms. Chase became involved in patient advocacy and research after completing her treatment. She is a prolific writer, blogger, and public speaker, having been featured in the New York Times and People Magazine.

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Transcript edited for clarity. Any views expressed above are the speaker's own and do not necessarily reflect those of Oncology Data Advisor.