Taking the Stage for Patient Advocacy With Megan-Claire Chase

Oncology Data Advisor: Welcome to Oncology Data Advisor. I'm Keira Smith, and today I have the pleasure of being joined by Megan-Claire Chase. Thanks so much for coming on today.

Megan-Claire Chase: Thanks so much for having me.

Oncology Data Advisor: Would you like to introduce yourself and share a short overview of what you do in your work for cancer awareness?

Ms. Chase: Yes, I'm known in the cancer space as "Warrior Megsie." I am a soon-to-be seven-year, come October, invasive lobular breast cancer survivor. I'm also a caregiver; my mother is an ovarian cancer survivor and has a rare blood cancer now. I live right outside of Atlanta, Georgia. I have a cat named Nathan Edgar. He may or may not be making an appearance, so if it sounds like a baby, that's just him talking.

I never set out to be an advocate. It happened very organically because I was coming up against so many barriers. That is ultimately how I entered the whole world of advocacy. And it's because I couldn't keep quiet of what I was going through. I was like, "I can't be the only one." So, that's really how it all started. Now I work in the cancer space; I did ultimately change my career. But I realized there's still a long way to go regarding those who come from—I hate to say the word "minority," so I say "minoritized", "marginalized", or historically excluded communities. There's a long way to go.

Oncology Data Advisor: I was really excited to see that you recently appeared on the "Beyond Cancer" episode for PBS. What was this like, and what did you talk about on the show?

Ms. Chase: Oh, my gosh, it was seriously one of the highlights of my life. What a lot of people may not know, is I'm definitely on the dramatic side. I've always wanted to be on stage, I wanted to be on Broadway. I even wrote a blog piece about how it felt being on the stage. It's just a different kind of stage and a different audience that I never thought about. I was on "Stories from the Stage," and it was great, because it was all cancer survivors or those who are currently in treatment or metastatic. We were all of color, and this was a partnership with the organization Count Me In, where they do genetic testing and amplify Black voices.

So, we got to go to Boston. I've always wanted to see my name in lights. I saw my face on a billboard outside of Boston's GBH TV station. That moment, I still can't believe that happened. Oh my gosh, I got so emotional just seeing that, because it was like I had arrived. But I was like, "Wait, where am I going?" It was a challenge, actually. I'm someone who blogs and writes. It's a lot from the personal side, essays and things like that. Learning how to be a storyteller for this experience was different in that I was writing what I was ultimately going to memorize.

This was their first time having cancer survivors and patients appear on "Stories from the Stage." A lot of us were nervous, because a lot of us have some residual or continuing chemo brain, and we had to memorize a seven-minute story about ourselves to tell in front of a live studio audience. I want everyone to know, that was recorded in front of a live audience of about 120 people, so talk about nerves. But it was beautifully challenging, because it really helped me understand that when you become a storyteller, you have to focus on very specific elements of your story. Of course, there's so much you want people to know, but what did I want people to know right now about my story? All of us had to drop in some facts about our specific cancers. The facts that I dropped in were a.) lobular breast cancer is known as the sneaky breast cancer, and b.) it's rare in Black women. In fact, there's barely any research on invasive lobular in Black women. Then I dropped a few other facts in there as well.

I have to tell you, it was so interesting and amazing to bond with these other cancer survivors and cancer patients. One had literally finished her treatment two days before we started recording. As emotional as it was listening to their stories, we all had some similar experiences of being dismissed, being talked down to by our medical providers, and our symptoms not being really heard or reviewed.

Instead, it was just, "Oh, you need to stop drinking." Well, I'm not a drinker. "Well, you just need to lose weight." Well, the whole point is that I've gained weight. I was never an overweight person. We all have that similarity of our providers not talking to us and dismissing us, and then we get diagnosed with cancer and it's still a struggle.

So, it was really just an honor. And I have to tell you, when I was told that I would officially be on PBS, and that it would be on World Channel as well, it was like I was watching myself. I remember walking up on the stage, and then I remember saying my first line, and then I remember walking off the stage. I had no memory of the actual performance. I was all like, "Was I even good?" But then people were coming over to me and they were crying, so I was like, "Okay, I must have hit home somewhere." But I kept wondering, why do I have no memory of this? What's happening? It's because I was literally living my dream of being able to perform, and I was so in the moment that I had no memory. When I watched it on PBS, to me it was like the first time. I actually made myself cry when I heard myself telling this element of my story about losing my fertility. I don't even know how to come back from that experience. I want to do it 24/7.

Oncology Data Advisor: That is absolutely incredible. It must have been such a surreal experience.

Ms. Chase: Absolutely. And I also knew that it was a different audience. Normally, when I'm on panels or telling parts of my story, it's to others in the cancer space or medical providers in the medical community. This time it's going to reach a different audience and really help educate people of what it's like to a.) get cancer, and b.) get cancer when you already have so many barriers due to your race.

Oncology Data Advisor: Yes, it's such an amazing platform to be able to share all of that. What was the main message that you were hoping to convey to the audience?

Ms. Chase: I really wanted them to know how hard it is for us to be believed. We're not being—and when I say "we," I mean the Black community specifically, since I'm a Black woman, so that's what I'm going to talk about—we're not being oversensitive and it's not our imaginations of these microaggressions that we experience in the medical community while trying to stay on top of our health. Another thing I wanted people to recognize is that a lot of us are mixed with something. We are all mixed with something. Our symptoms may not present the same as our White counterparts. That was my second message I really wanted to hit home, that our doctors really need to see us, the person, and get to know our family history to actually recognize that this could be breast cancer, because none of my symptoms were obviously breast cancer.

But when I finally did get the diagnosis and I told my primary about it, she was like, "Oh, well we don't know if that's what it was really, if that was the cause of it." I'm like, are you kidding me? So, we need to be talking about that. Then the third point of my story that I wanted people to know and to have an impact is about fertility preservation for Black women specifically, especially because there's such a high mortality rate when it comes to pregnancies. Though I lost my fertility, I want other Black women to know that when you get diagnosed with cancer, you can ask what you can do about fertility preservation or at least have a consultation. Sometimes they won't even tell you that maybe you should get a consultation, because if they see you with kids, they might be like, "Oh, she doesn't need anymore."

They're making decisions for you.

What happened in my situation is that I was meeting my oncologist for the first time, and in the same breath, she was like, "You're going to need 16 rounds of chemo, and do you want to freeze your eggs?" So, of course, all I heard was 16 rounds of chemo. My immediate thought was, how am I going to pay for this? How am I going to work through this? My mind was going a mile a minute. I wasn't even thinking about fertility because I'm chronically single and I have no human kids. My cat, Nathan Edgar, he's my baby. But there was no follow-up with that. There was no nurse calling me the next day and saying, "I know that was probably a very overwhelming appointment for you, first time ever talking with an oncologist, and I want to make sure that you fully understood what's happening next."

That's something I really, personally, value as one of my advocacy things that I talk about. We really need to have those kinds of conversations, because you're like a deer in the headlights. The way I ended my piece of my story was that I will not have a physical legacy. I never really thought about that grief and how much that would change me when I had to get a hysterectomy and a bilateral oophorectomy, which means also removing the ovaries. I have nothing in there that makes me a "woman." All of it had to be removed because my body would not tolerate the current medications to help reduce recurrence. It really hit home once I literally felt nothing inside and how my insides had to shift around, because now there was all this room and that was really painful. But I was like, "Oh my God, I'm an only child, who's going to know I existed?" You know what I mean? It's like my stories actually do end with me.

That is why I am so open about what I've been through and continue to go through, because I want to know that I was here and that maybe something I said might have helped someone else to have the confidence to ask the questions of their doctors, think about things in a different way, and know that it's okay to speak up. It's okay to advocate for yourself in the moment. You're not being too sensitive or crazy when you feel some type of way after talking to your provider, because those microaggressions in the medical community are just how it is every single day of our lives. That's what made me sad too, is that even in cancer-land, we still have to deal with the implicit bias, the racism, and the microaggressions.

Oncology Data Advisor: Thank you so much for sharing all those messages. I'm sure your story and your advocacy are an inspiration and a catalyst for many people, so it's definitely making an impact.

One additional question I'll ask you is, we're in the process right now of launching a Patient Advocacy Hub on Oncology Data Advisor. We're really trying to spotlight some of the patient stories and the advocacy work that you and so many others are doing. So, one question I'll ask you is, what are some of the elements or the important pieces that you think would be most valuable for our clinician audience to hear on this site?

Oncology Data Advisor: First of all, that's amazing, and it's so needed. I think it's just so important for clinicians to slow down and actually be present with the patient. A lot of that is systemic. We constantly hear, whether you're at your primary care physician's office or you're at your oncologist's office, how pressed they are for time. But that's actually really hurting the patients, and it's also hurting us building trust with them, because we can tell a lot of times that they're already thinking about their next patient and not really fully being present with us. That can feel so uncomfortable for someone. I mean, I'm not a shy person, but it can be really hard for me to get the courage to ask questions when I'm sitting there in a hospital gown on the exam table feeling really vulnerable.

Then I think about those who don't have an education or those who have a language barrier, and I'm just like, "Oh my gosh." We really do want to build trust with them, and we want this to be a partnership. I also feel like clinicians need to know that when patients and advocates bring up research to them and say, "Hey, I found this and it's from a reputable source," they should actually acknowledge that and say, "You know what? Let me look into that. I will get back to you, because I want to review this more in depth." Instead of just outright dismissing it and saying, "Well, I highly doubt that's the case for you, and it's not relevant because it was done over in the UK." I've actually had those kinds of responses from doctors when I've brought up research. That is just something that's really disappointing. They really need to be open to that because we know that if they barely have time to see us as patients, how are they keeping up with the latest research? So, that's something I would add in there.

Oncology Data Advisor: That's great, thank you. That's definitely something really valuable we can incorporate, so thank you again. Anything else you'd like to share, maybe about other opportunities that you have coming up or what you're doing next?

Ms. Chase: What am I doing next? I mean, I do have some things on the horizon that I can't talk about yet, because they're still being planned. But what has been exciting is the response from the medical community, quite frankly, to my story, and also other patients who have watched it. I think what you'll see is some more writing being done and making more videos. I sit on quite a few boards as a patient advocate and help with content for certain industry partners, making sure that the images that I'm seeing are reflective of the communities that they say they're trying to serve.

I don't like to call any community underserved—no, they're unsupported. If there was support, if the doctors and researchers would come out into those communities, I think we would really see a difference, because we're still dealing with that medical mistrust. I still have it. My pain has not been believed for over five years. So, that's something I think you'll continue to see from me, continuing to talk about the needed changes—changes in the way that people talk about Black people and those who are unsupported and historically excluded communities. Stop calling us minorities; that has a negative connotation. Also, we really need to see our images in your materials. Quite frankly, something that I continue to help others work on is how to make the language more patient-friendly. So, those are some of the things, and I may or may not be officially trying to write my one-woman show. I need to get back on the stage. So, I hope that I get another opportunity to do that, even if I have to create it myself.

Oncology Data Advisor: Great, and I'm looking forward to seeing whatever the next one is. Well, thank you again for talking with me today. This has been really great.

Ms. Chase: I appreciate it, and maybe it'll help somebody.

About Ms. Chase

Megan-Claire Chase is a patient advocate and 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 survivor of stage IIA invasive lobular breast cancer, Ms. Chase became involved in patient advocacy work after completing her treatment. She is a prolific writer, blogger, and public speaker, having been featured in the New York Times, People Magazine, and on PBS's "Beyond Cancer" episode of "Stories from the Stage." Her story and work are documented in her blog "Life on the Cancer Train."

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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.