Endometrial cancer patient advocate reinforces the importance of normalizing conversations about symptoms

 

Transcript:

Bonnie Rochman (00:03)
Today, I’m talking with Margie Wilson, who was diagnosed in 2016 with endometrial cancer, about the road that she’s traveled. She went from not even knowing what an oncologist is to being an outspoken patient advocate for Black women with cancer. Margie, welcome to our podcast from Bench to Bedside and Beyond.

Margie Wilson (00:42)
Thank you, Bonnie, happy to be here.

Bonnie Rochman (00:45)
Happy to have you. So I’m hoping that you can just start by telling our listeners how you first got diagnosed and what that was like for you in back in 2016.

Margie Wilson (00:56)
I was first diagnosed and started having symptoms that were bothering me probably seven or eight months before I was actually diagnosed. It was just bleeding, unexplainable bleeding, and for a while I thought it was menopause, and I finally mentioned it to my doctor.

She said no and sent me through a biopsy. Well, I didn’t get the biopsy at that moment, but I did do an ultrasound where the lady thought my lining was a little thick. I remember her saying that your lining’s a little thick and once again I still didn’t know what that meant and then I went and saw another after I moved — I was in transition; I moved from one city to another — and when I got a new doctor, I went to another OB-GYN because this bleeding was still off and on but getting heavier and I went to another OB-GYN and that’s when she took the biopsy in the hospital, which was horrific — no painkillers, nothing, they just started grabbing stuff up there, it was bad.

They did the biopsy and then she connected me with an oncologist OB-GYN specialist and at that point was when the words were all thrown at me: You have this, might have that, you might have this, and I’m just sitting like a deer in headlights. And then from there I went and got a couple other opinions before I actually started treatment.

But it was the unexplainable bleeding that led me there. I didn’t have any real cramps or pain or anything, but I just felt like I shouldn’t be bleeding still. I mean, is menopause over? Really, I always say my cancer was hidden menopause because I felt like every symptom I had mimicked menopause. So be aware, ladies. When menopause starts, watch that. 

Bonnie Rochman (02:33)
Which makes it much more complicated. Thank you for pointing that out. So I remember you said that the doctor, the oncologist that you saw initially, not at Fred Hutch, had asked how old you were. And you said, I think you said 58. And he said, You don’t need that anyway, referring to your uterus, we’ll just take that out. Right. And that did not go over well with you.

Margie Wilson (02:38)
Yeah, yes.

Bonnie Rochman (03:01)
Why is that?

Margie Wilson (03:01)
Well, for one, Bonnie, I was in his office for like 15 minutes, and all of everything I’m going to tell you happened in 15 minutes. He checked me on the table. I was bleeding then. He said to me, you might have carcinoma, this might be cancer. It might not be cancer. How old are you? 58. Oh, you don’t need it anyway. We’ll just take everything out. And then at the very end, I was in the office next door, making an appointment to have surgery to have a hysterectomy. And a friend of mine with me was asking him to slow down — he talked really fast — and to explain to me what he was telling me.

You know, like he was throwing these words at me that I had no idea what they were because when I first heard the word, you know go to an oncologist OB-GYN and bring somebody with you, from the OB-GYN doctor who did the biopsy, I just said, Oh, okay. And I just casually mentioned it to my daughter, and she was like, Well, mom, they think you have cancer. And I said, Well, how do you know? She goes, where are you going to see oncologists?’ I’m like, oh.

I’m fine. I’m fine. Mind you, I’m healthy. I’m strong. I’m a fitness instructor. I eat fairly well. I take care of myself. There’s no reason cancer can touch my body. So yeah, that was not a happy experience for a person who doesn’t know the medical field. I go to the doctor once a year for my Pap. That was it. I dealt with fibroids in my early 40s, I mean, and that got healed with a natural remedy from a friend. They were gone. And so here I am listening to this man just talking. I’m like, really? 

Bonnie Rochman (04:43)
Yeah. So that’s what prompted you to get a second opinion. Is that right? You just felt like you were not being listened to. Okay. So then what happened?

Margie Wilson (04:52)
Absolutely. And my girls. Absolutely. And my son. Then my friend who was with me said, You know, you can get another opinion, too. I have two adult daughters. They were in their late 30s then and they were both like, get another opinion, get another opinion. After my surgery — and I want to say that my surgeon, the doctor that I did see, the fast-talking, not-listening doctor was a very great surgeon because everyone throughout my process said he did an amazing job. And so yay for that. So that was something positive about that doctor. 

And so then I went and I saw him after the 10 days, the post-op, and then I never saw him again. He said, we don’t take your insurance here. You’ll have to go to the [Seattle] Cancer Care Alliance then, which is now Fred Hutch. And that’s where I met my radiation doctor who gave me his opinion. And then my youngest doctor knew a doctor from UW, who knew the doctor, Dr. Kemi Doll, that actually does research on uterine cancers and endometrial cancer research. And so she plugged me into Kemi and I saw Kemi two weeks, no, about a month after my surgery. And then she ended up being my chemo doctor too, which I didn’t know at the time when I saw her, but my time with her was amazing.

Bonnie Rochman (06:08)
Right. Okay, and so you were saying that you, now you have this woman, this female doctor looking you in the eye, talking to you, stopping, making sure you understand. Do you want to write this down? Do you have any questions? And so that must have felt really different for you.

Margie Wilson (06:35)
Oh, it was so different. Finally, I felt like I was in my space. And you know, she was a Black woman. That made a big difference, too. I mean, I was just like, ah, because when my daughter sent me the picture of her and she goes, here’s her bio, her office is going to call you. And they did within the next week. And I got in to see her. Yeah, she was like, telling me all my options with the chemo and she broke down like the percentages of because she kept saying three to four rounds of chemo and the first doctor told me six to eight rounds of chemo and then she goes no, we only need four max you know and all of that so that was really cool and I kept asking her why and then she literally broke down the percentages letting me know that uterine cancer is high and a lot of time when they come back, it’s dark. By the time they find out, you could be well into stage 4. I was a stage 1B and grade 3.

You’re talking to someone who doesn’t really like to take a Tylenol. So I was very anxious, but we had a great conversation and I felt heard. Actually, we’re sitting at a little round table not in her office, in another space in the building, and it was just so comfortable. After that I felt like I could breathe. I was like, okay, you’re gonna be fine. You’re gonna be fine.

When I got to Dr. Doll, she said, “We’re not going to do pelvic radiation. We’re going to do brachytherapy. And then describe that to me all what that entails. And I’m like, OK, you’re going to do, yeah.

Bonnie Rochman (08:21)
Right, okay, before we started recording, I said, are you comfortable talking about brachytherapy? And you said, I better be because I talk about it all the time and I’ve been doing it for nine years. So can you?

Margie Wilson (08:41)
I know, I do. For one, it’s like what? Brachy? Wait, what is it? And believe me, I had to break it down before I could learn to say it.

Bonnie Rochman (08:50)
Yeah. Yeah. Okay. Well, so I’m sure a lot of people, I bet, don’t know what it is. So what is it and how did it factor into your treatment plan?

Margie Wilson (09:00)
Okay, so brachytherapy is where they do internal radiation where they take this little tube and they put it right up inside your vagina. Nine years ago when I was going through this, the machine was in this big open room, your feet are up in a stirrup and my day when I was there the intern, the intern’s assistant, the doctor, there’s five people all going. I was just like, really? But I did take a sedative because just the whole idea of it was daunting to me so I wasn’t completely coherent but coherent enough to know the room is full and everybody’s looking up your hoo-ha going, My gosh. Dr. Coe was great, he said it looks great up in there. Dr. Coe is no longer at Fred Hutch, but he was the kindest soft-spoken man and very, very intentional. I was probably in his office at least 40 minutes.

The first treatment was 10 minutes, then the other two treatments were less, like maybe six minutes, then four minutes for the last one, three or four minutes. But yeah, and I really didn’t have any major side effects from the brachytherapy because before he started, he showed me the dilators, which helps elasticity, you know, like if you’re not sexually active, which I wasn’t, it helps the elasticity come back into the vagina after. And he explained all that to me before my first one and I appreciated that he gave me all the tools.

But I did take a bath because I didn’t read the paper. So I took a bath and when I came back the second time, I mentioned it to the nurse and she was like, no, you’re out. And I said, no, she goes, it was on the paper she gave me, but I just overlooked it and I lived in the bathtub. I lived in the bathtub when I was going through chemo. It just always felt good. But it was just mild. I’m having some burning down there. What’s going on? And I never got in the bath again until I was done. But yeah, so for me, the side effects weren’t horrific. And it’s not painful at all. It’s just uncomfortable and invading. But yeah.

Bonnie Rochman (10:55)
But when that the story you related about everyone being crowded in there and saying it looks great — I mean, that is what you want to hear. 

Margie Wilson (11:23)
I did follow up with lower pelvic therapy. I did seven or eight sessions of that. Lower pelvic, very enlightening. Very, I had no idea. 

Margie Wilson (11:46)
I had two different therapies. I did it I think in 2018 then I did it again in like 2021. I just wanted because I’m still getting pelvic exams and they still look up in there once a year or so and I don’t want that to be painful, and if there’s no elasticity, then you know and I didn’t want that but that is what they teach you about. Well, and some of it I knew, a lot of it I didn’t, and just how they work inside to break down the scar tissues from the radiation. They said they mostly deal with people just who just have really tightness down in their vagina. And I was like, they’re really nice, both of them really nice ladies and I learned a lot. 

Bonnie Rochman (12:28)
Yeah, you don’t meet those people every day on the street. It’s part of the whole patient experience. So speaking of patient experience, I think a lot of patients have their treatment, it is certainly not a high point of their life, and then they’re ready to move on.

Margie Wilson (12:37)
That’s right.

Bonnie Rochman (12:51)
But you opted to get deeply involved in patient advocacy and you remain deeply involved. So you are now a program manager with ECANA. Am I pronouncing that correctly? Okay, the Endometrial Cancer Action Network for African Americans. So how did you get involved in that in the first place?

Margie Wilson (13:06)
Yes, you did. Absolutely.

My very last appointment with Dr. Doll, she said, and I knew she did research, she goes, I’m fixing to start another project and I need a patient’s voice. Would you be interested in being a patient partner with me? What else could I say but yes? And I’m like, sure. Not really understanding the full magnitude of what that meant. And then in December of 2017, we started ECANA.

We have our first meeting. Yeah. And today I think we’re in our seventh year. Is that right? Oof, oof. Yes. I manage all our programs — our flagship program was our survivor sanctuary, where we meet right now four times a month to support Black women who are going through endometrial cancer at whatever stages they may be. And then we do educational initiatives. We sit at the research table. We’re in the room with the doctors and the scientists to be that patient’s voice and to share our stories to help them learn and do what they need to do as well. And then we do community, which is our survivor sanctuary. So we do all kinds of activities and we’re all virtual.

So I think we represent about 25 different states where people can show up. Like when we have our group, we’ll have them put their name and then put where they’re from so we know where people are. We have quite a few ladies on the East Coast. I always tell people I live in East Coast time. I always say, I start my meetings at 5 a.m. I’m done by noon.

Bonnie Rochman (14:54)
You do chair yoga, you do Bible studies for people who are interested. You have exercise groups, you encourage women to move even if it’s just walking to the mailbox daily. Yeah, and I remember you had said some of these women when they first come on and they first find out about it, they, they, you know, join the group online. And some of them start crying because, well, rather than me saying why I think that is, why do you think they start crying?

Margie Wilson (15:20)
Well, for one, they like me had never heard of endometrial cancer, had no idea what was ahead of them. Some have not, hadn’t had any support at all. Like they didn’t have any, it was hard to, you know, of course your family and friends love you, but it’s sometimes really hard to talk to them to where they’re, they actually get what you’re going through and what you’re feeling. And for those that did show up, we’re like, my gosh, I’m finally in a space where I have people that look like me.

But they’re like, they’re talking about all the cancers. And then they’re talking, I mean, I’m looking around and I’m the only Black woman in the group. And it’s just, just that feeling of sisterhood, I think that that’s what we get a lot, you know, like, my gosh, I’m so glad I found you ladies. And then what’s wonderful in it, which is my, one of my main goals is to have the women connect outside of sanctuary. They’re on the phone. If they’re close to the same cities, they go see each other. Every time they meet up somewhere I’m like, send me a picture, send me a picture. You know, like maybe one’s going on vacation here and one day, I’m gonna be there, I’m gonna be over there, good, get with so and so. And they did meet up, take pictures and build relationships because I really strongly believe that community and relationships is a huge part of our healing process and not feeling alone, and hearing someone say, “me too.”

Everyone’s nodding their head while they’re describing their experience. We’re all like, yeah. Of course, all of our journeys are a little different, but they’re so much the same. Yeah.

Bonnie Rochman (16:57) 
Yes. Right. And it’s particularly important because the rate of diagnosis within the Black community is lower, but these women are dying at higher rates because they’re being diagnosed later. And you believe that’s because they’re actually not being listened to.

Margie Wilson (17:14)
Absolutely. We hear that story way too much. They said, you’re going to be okay. No, you’re fine. Take a Tylenol. It can’t be that painful. You know, it’s like, who are you to judge what kind of pain I’m in?

You know, and then the longevity, I’ve heard this year, my doctor canceled the appointment again. I was supposed to go do this. it got canceled again. And literally the head-down syndrome, when you’re in the doctor’s office, they’re taking their notes or on their computer. They’re not even looking or talking to you to see who they’re talking to. And they just, that dismissive look, it’s hard, especially when you’re going through something that you don’t know what’s going on, and inside you’re just feeling not heard and not listened to. And so we’ve helped navigate women through that as well. We have all this on our website as well.

Bonnie Rochman (18:07)
And what, so I think a good way to wrap up would be to ask, having gone through this yourself, what sort of advice do you have for women and especially Black women who you’ve noted are less likely to talk about cancer openly, publicly? So do you have any advice? What kind of advice do you have after going through this yourself?

Margie Wilson (18:26)
Well, for one, when I was about 10 or 11, my mom, and my mom had all of us really young, too. I was the third. She’s in her early 30s and she had a complete hysterectomy. I didn’t know why.

Today, I found out two years ago when I was talking to my sister. She goes, it’s because of the fibroids. No one talks about it. We’re talking about it in our home. I have five grandchildren and my grand girls. We talk about everything. I talked about it more than my mom did, but I didn’t talk about it like I do now. And talk about vaginal health in your home so everyone’s comfortable. It’s not hiding. It’s not secret.

By the time I had been bleeding for so long off and on, I was tired of talking about it. So I wasn’t talking about it. Well, nobody else did either, right? So it’s like, talk about it in your home so it makes it comfortable. That's one of our  initiatives that normalizes it — our Project Impact where we literally hand bags out with information on endometrial cancer and a way to contact ECANA. So women can say, what is that? 

Bonnie Rochman (19:19)
Yeah, normalize it.

Margie Wilson (19:36)
Get the knowledge. Knowledge is power. And that is how we save our community. And keep talking. And then of course I told you earlier, my story is my cancer hit in menopause. Don’t let that happen to you. All my close girlfriends all have journals. Most of them are younger than me. You have a journal. When you go that one year and there’s no blood, you know you’re done. If you see any blood after that, go straight to the doctor. Don’t ask any good questions. Don’t ask any friends. Go to the doctor. That one sign is bleeding after menopause, postmenopausal bleeding.

Bonnie Rochman (20:11)
Margie, thank you. This has been amazing. Really just hearing this is going to educate a lot of women. Thank you so much for joining us.

Margie Wilson (20:12)
You’re welcome. You are so welcome. Thanks for having me, Bonnie.