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Black Women Get Breast Cancer Too

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Published on February 26, 2020

Key Takeaways

It’s real and it’s here,” says Air Force veteran and metastatic breast cancer patient Sheila McGlown as she recounts being diagnosed with breast cancer after losing her mom to the same disease. Sheila explains that often African American women are unaware of the risks of breast cancer, and stresses the importance of establishing trust with doctors, having candid conversations and asking questions about the disease. Watch to hear her story and what she wants other women of color to know.

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Transcript | Black Women Get Breast Cancer Too

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrea Hutton:

Hello.  I'm Andrea Hutton from Patient Power, and I'm here at the largest breast cancer conference in the world.  And today I'm talking to Sheila McGlown who has been living with metastatic breast cancer for 10 years, which is amazing. 

Sheila McGlown:

Thank you.  Great doctors.  

Andrea Hutton:

And so, Sheila, tell us your story.  How did you find out you had breast cancer?  What happened to you? 

Sheila McGlown:

Well, I’m a 25‑year Air Force veteran.  So, I was sitting at my desk.  I was active‑duty military, and I was sitting at my desk and I sneezed, and it burned.  And I was like, "That's weird."  And then I sneezed again like a week later, and I was like, "Dang, that's the second time.  That's weird."

So, I called my doctor, and I was like, "Maybe I think it's my breasts, you know, because my mom died of metastatic breast cancer in 2004, and she was diagnosed in 2001."  And I was like, "You know, I think it's my breasts, but I don't know what it is." So, I went in, and she checked my breasts.  She said, "No, I don't feel any lumps or whatever, but we'll still order a mammogram." So she ordered a mammogram maybe like a week later. 

I went in.  It was December 2nd, 2009 at 10 o'clock—I'll never forget the day—just some dates and times you don't forget.  And she did the mammogram, and the radiologist told me to sit down, so I'm like, “Uh-oh, something's wrong.”  And then she said, “Well, we need to do an ultrasound.”  And I'm like, “Yeah, something's wrong.”  And then when they did the ultrasound that's when they found the breast cancer. 

But then they did an MRI, and the radiologist pulled me in, and he said, “You see all this white stuff in your breast?”  He said, “That's breast cancer.”  And he said, “What you were feeling was the pressure of the cancer on your ribs.”  It had already spread to my liver and ribs.  So I immediately started treatment.  I went down to Siteman Cancer Center and immediately started treatment, and here I am today. 

Andrea Hutton:

So this was in your family. 

Sheila McGlown:

Right. 

Andrea Hutton:

Your mom had died.  So was breast cancer something that you had been afraid of your whole life, or had you not thought about it and that was your mom, and this had nothing to do with you? 

Sheila McGlown:

You know, before my mom was diagnosed, I didn't even know black women could get breast cancer.  I knew nothing about breast cancer.  I knew nothing about cancer.  I knew nothing about metastatic breast cancer.  I knew nothing about stage IV, that was the same word as metastatic.  I didn't even know how many stages there were.  Because my doctor pulled me in and she said, "Well, it's stage IV."  I'm like, "Well, how many stages are there? " And she said, "Well, you got all of them. " And I'm like. "For real? 

I didn't know, and I didn't educate myself after my mom died, because I was so angry that it took my mom from me, because that was my angel and my best friend.  But yes, that just changed my whole course of life when I found that out.  So that's when I decided I need to be more educated, and I need to know more about my medical history, family history when it comes to cancer and other diseases that go on in my family just to make people aware in my family what's going on, so.  

Andrea Hutton:

So how did you go about doing that, and how did your family members feel about it?  

Sheila McGlown:

Well, you know, the hardest part of course was telling my dad, you know, telling my dad that the same disease that killed his wife because cancer took my mom, it was the same disease that I had. He cried.  I'm like, “Oh, God.”  He kept saying, “I'm sorry.”  And it's like, “It's nothing that you've done, you know.  It just happened.”  So I had the genetic testing which came back negative, and I wanted to take all the right steps to make sure that I knew what I could do in my family to hopefully prevent anyone else from getting this disease.  So that's why I do what I do.  

Andrea Hutton:

And so, your mom had died of breast cancer.  

Sheila McGlown:

Right. 

Andrea Hutton:

And you have breast cancer, but you took the genetic test and they don't find anything.  

Sheila McGlown:

That's right.  

Andrea Hutton:

So what does the genetic counselor tell you in that circumstance?  So what do you know now? 

Sheila McGlown:

So I took the test 10 years ago, and she said that it still could be genetic, but maybe it's a gene that they haven't—they don't know about yet.  So I took that for what it was worth, I guess.  But they said, "It's not genetic," so I'm thinking, "Well, maybe is it something while I was in the military, or maybe it was something where I was stationed at or something like that."  So.  So still to this day—because I asked my doctor, I'm like, “Where did it come from?”  She said, “Sheila, we don't know,” so. 

Andrea Hutton:

I know as a breast cancer patient myself that's one of the first questions we want to know is how did I get this?  

Sheila McGlown:

Yeah.  Or how long it's been in my body. 

Andrea Hutton:

Yeah.  

Sheila McGlown:

And she said, “Sheila, I just can't tell you.  So I started having mammograms at 37,” and she said, she just said, “Sheila, we just—that's just something we don't know.” 

Andrea Hutton:

So now you've taken this diagnosis, and you've turned it into advocacy work to help other people.  And what message are you trying to share with people?  

Sheila McGlown:

For one, to be your own advocate.  Two, that African American women, we're dying faster.  We're getting in at later stages, so we need to take all the steps necessary to hopefully reduce the risk of breast cancer, whether it's getting your mammograms and doing your self-breast exams, and just having candid conversations about breast cancer. 

That's all I want people to do is just have candid conversations.  Even, you know, October comes around and it's like everybody is in a frenzy, but November 1st it's like nobody's talking about it.  You don't see the commercials, different things.  And for me advocacy is 365 days.  I'm going to talk about it every day until one day whatever happens, but, you know, we need to have these candid conversations in our communities, for veterans, for LBGT community.  You know, just have those open conversations about breast cancer. 

It's not only about mammograms, but I didn't even know that it was all these subtypes of breast cancer.  Like who would have thought that it's inflammatory and triple-negative, and I was HER2‑positive? I never—just didn't know this stuff.  So it's important that—you know, every step that I take I tell my daughter, "Okay?  I have HER2‑positive breast cancer.  I want you to know this, and this is the chemo I'm on, and this is what the doctor's doing, because I want you to know that. I want you to educate other people."

Andrea Hutton:

Well, you said you didn't even know that black women got breast cancer. 

Sheila McGlown:

No. 

Andrea Hutton:

Even though your mom had it. 

Sheila McGlown:

Right.  Yes.  I thought she was the only one.  I'm like, “The only black woman I know is my mom”.  Because you know you look at the commercials you don't see black women, back then, 10 years ago, that were on commercials with breast cancer.  You only see white women with that.  So I just thought, “Okay, that's what it is.”  So you do the walk saying I just thought it was all about that, but it's so much more. 

Andrea Hutton:

So what kinds of things are you doing, besides talking to us here, to get the word out?  What can people do? 

Sheila McGlown:

Well, just going out to your church, just having candid conversations.  For me, next year I'm going to go out to beauty salons and barbers and do lunch‑and‑learns and talk to my congressional leaders about breast cancer and different things like that.  So just—just making sure—for nine months I didn't know that I could go to a support group.  So for nine months when I was initially diagnosed I was there in Illinois by myself, so I didn't have any support.  

And that's when I said, "No woman or man should have to go through breast cancer alone." And I made that my motto and my mission that if I can help you, if I can go to chemo with you or whatever, just showing that support, that's what I was going to do.  So just talking about it.  Just having the candid conversations that we need to have, and not just for October, just having them. 

And not being scared to talk about them, the issue, you know, of breast cancer because it's real, and it's here.  And hopefully one day we can get rid of it, but for now we've got to at least hope and pray that one day maybe they'll find a cure for it, so.  

Andrea Hutton:

Yeah.  I say, “People are diagnosed with this disease every single day, not just in October.”

Sheila McGlown:

Right. 

Andrea Hutton:

So absolutely, it's important to talk about.  Like you said, for African American women, a lot of African American women present with metastatic breast cancer, and what does that even mean?  And what's the difference—what's the difference between finding it at early stage and living with metastatic breast cancer? What's your experience with that, and how to handle it? 

Sheila McGlown:

Yeah, even talking about it and knowing what metastatic breast cancer is, it's just for me, I didn't know—I didn't even know that you can get breast cancer in your ribs, and for years I thought my mom, because it had spread to her lungs, died of lung cancer.  But that's not the case.  She died of breast cancer, and it just spread.  So it's just all about educating, educating the community about metastatic breast cancer, about the recurrence rate, about the statistics when it comes to African American women.  Just being an educational voice for the people that just don't know. 

Or what questions to ask your doctor if you're diagnosed with metastatic breast cancer.  Like,"What chemo am I going to be on?  Or is there a clinical trial?"  Because only 1 to 3 percent of African American women participate in clinical trials, and that's because of our cultural background.  But I want to teach physicians how to talk to African American women. 

Andrea Hutton:

In the African American community I'm hearing all the time how difficult that is, that the trust factor is not there.  So, what is your advice to patients about what they can do to have a good relationship with their doctor?  How do you build that? 

Sheila McGlown:

For me it was like my doctor was between me living or me dying, so.  And for a long time, I didn't even think about getting a second opinion. I never even wanted a second opinion. I never even knew I could get a second opinion, so it's a lot of things that I just didn't know.  But if you want to get a second opinion, fine, get a second opinion, but you have to build the trust first, you know, and then—our doctors they're there—somebody said today that our doctors work for us, you know, so they should be—you know, we want to survive.  They should treat me as a—they want me to survive too. 

Andrea Hutton:

You've asked your doctor, "Hey, bring in the nurse."

Sheila McGlown:

Right.  

Andrea Hutton:

Bring in somebody who can explain it to me in the way that I can hear it.  

Sheila McGlown:

Right. 

Andrea Hutton:

And if it's not your doctor, maybe there's somebody else in the hospital who can talk to you.  

Sheila McGlown:

Right. 

Andrea Hutton:

I never thought to do that. 

Sheila McGlown:

Right. And the requirement shouldn't be for me to be educated, because I'm not educated on what's about to happen in my life as far as when it comes to metastatic breast cancer.  It should be the doctor that's—"Okay, you're the educated one.  You should be telling me, 'Okay, you're about to go to menopause. ' So okay, so what does menopause mean?  I was 43 when I was diagnosed.  I know what it means, but what's going to happen to my body?  So you're the educated one.  You should be telling me what's going to happen with my body, you know.  You shouldn't expect me to know these things."

And I always tell people to take someone with you, whether you have to record the conversations when you go in. 

Andrea Hutton:

Thank you so much. 

Sheila McGlown:

Thank you so much. 

Andrea Hutton:

And for all the work and for all of the knowledge and information that you're imparting because, you know, knowledge gives us hope.  

Sheila McGlown:

Yes. 

Andrea Hutton:

Thank you.  

Sheila McGlown:

Thank you so much.  I appreciate it.  I appreciate you inviting me. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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