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Organization With Breast Cancer Resources for Women of Color

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Published on May 5, 2020

Key Takeaways

Breast cancer is not the same for everyone. Neither is access to quality care. In this interview, Marissa Thomas and Jasmine Souers, co-founders of For the Breast of Us, sit down with Patient Power’s Rebecca Seago-Coyle to discuss the distinct challenges women of color face before and after a breast cancer diagnosis.
 
Marissa and Jasmine met through social media after being diagnosed with breast cancer in their 20s and 30s. When they finally met in-person at a conference designed for young women, they still didn't feel like part of the group, so they started their own organization.

Listen in as they talk about their diagnoses, discuss the barriers they faced and explain what they’re doing now to help others.

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Transcript | Organization With Breast Cancer Resources for Women of Color

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.

Rebecca Seago-Coyle:
Hi everyone. I'm Rebecca Seago-Coyle with Patient Power, and I'm joined here by two wonderful women who have started a really great organization called For the Breast of Us. Jasmine Souers, hi, welcome.

Jasmine Souers:
Hi. Thank you for having me.

Rebecca Seago-Coyle:
Yeah, and Marissa Thomas.

Marissa Thomas:
Hi.

Rebecca Seago-Coyle:
So these two lovely women were diagnosed with breast cancer at a young age and met up through social media and started their own foundation called For the Breast of Us. It's very important to them and also to Patient Power to be able to show that there is a range of diversity with people who are diagnosed with breast cancer. One thing's for sure that if you have breasts, then you're at risk for developing breast cancer, but it's nice to know that you're not alone and that there are resources out there to find someone who looks like you, your age and everything. So thanks, ladies, for joining us tonight.

Marissa Thomas:
Thank you for having us.

Rebecca Seago-Coyle:
Marissa, now you're in Seattle, Washington, and you were diagnosed at 35. Is that correct?

Marissa Thomas:
That is correct.

Rebecca Seago-Coyle:
Yeah, and you had ER-positive, right?

Marissa Thomas:
Yes, mm-hmm.

Rebecca Seago-Coyle:
So can you tell me a little bit about your journey? Did you go through chemo or radiation and reconstruction?

Marissa Thomas:
Yep. I kind of did the whole gamut so lumpectomy, chemo, radiation, and then I had two reconstruction surgeries after that as well.

Rebecca Seago-Coyle:
And, Jasmine, so you're down in Florida, correct?

Jasmine Souers:
Yes.

Rebecca Seago-Coyle:
Yes, and you were diagnosed actually at 28, which is very young.

Jasmine Souers:
I was actually diagnosed at 26.

Rebecca Seago-Coyle:
Wow.

Jasmine Souers:
Yeah, I think we started For the Breast of Us when I was 28. I was misdiagnosed at 25. It took about six or seven months for me to get an accurate diagnosis. Then I was officially diagnosed at 26.

Rebecca Seago-Coyle:
So that's a common thing that women of color typically have a challenge of getting diagnosed with breast cancer. I know from my own experience being—I was 35 and had felt a lump, and even my doctor at the time said women my age get lumps all the time. I knew that wasn't true, and I knew I needed to fight a little harder to find someone who would listen to me and pay attention to my family history. But as a woman of color, what challenges do you guys have with getting that diagnosis, especially at a young age?

Jasmine Souers:
For me, I think it was probably a more painful experience just because the doctor that—I think one, it was a lack of information. I think that's one of the challenges to getting an accurate diagnosis. So my grandmother is actually a two-time breast cancer survivor. She's currently living with metastatic breast cancer, and my understanding of breast cancer was that it's in the family. I didn't really understand. I didn't know that there were genes or things like that. It was just like I know it's in the family. So when I first started having the swollen breast, and it's painful, and everyone says, “Cancer doesn't hurt,” and we never felt a lump. There were all these abnormal things, but I went to the same doctor that my grandmother saw. So that doctor kind of held onto it a little longer it, and she did the mammogram. She did the ultrasound, but as most people know, for younger women, mammograms are not effective screening methods.

I did not know that a mammogram was not an effective screening method. So even though I knew something was wrong, I was still thinking that my doctor did everything that they were supposed to do or that they could have done. I think that was probably the most painful but hurtful experience, because I really trusted that doctor to have done everything. It wasn't until, like I said, about six or seven months later when I got to a breast surgeon and we did a breast MRI, and by then almost the entire breast had lit up when they used the contrast. So really lack of information and I think kind of going against that stereotype that young women can't or don't get breast cancer, and there's such a large community of young women with breast cancer.

Rebecca Seago-Coyle:
Yeah. And, Marissa, did you have a similar experience too with getting diagnosed?

Marissa Thomas:
Somewhat. I actually had my physical like two weeks before I found my lump and my primary care doctor when she was doing my breast exam, we both felt it, and we both kind of paused. And I said, "Oh, well, I've been kind of working out a lot. Maybe I just like strained a muscle." She kind of dismissed it too and was just like, “Oh, it's no big deal. We don't have to worry about it." I remember getting in the car and texting my sister and was like, "Oh, my doctor kind of felt something," and then she was just like, "Oh, it's probably nothing if she's saying it's nothing." I think that's another one of the big misconceptions within our community or women of color. It's like what Jasmine said. She trusted that doctor. That's what they told her, so you believed that.

But I think what we are trying to empower more women now, it's like you know your body. So if something is wrong and if the doctor that you're telling this to if they don't listen, then you need to go find somebody else that will. Because a lot of women that we talked to have all said they have found a lump themselves, and they go to their doctor, and they say something, and they say kind of like Jasmine's situation. It's just like, "Oh, you're too young. That's probably not it."

I remember my sister also telling me, "Oh, well, if it's close to your period, maybe that's what it is." But I know for myself, I didn't have lumpy breasts, so I knew right away when I found it myself two weeks later after getting out of the shower, I knew that it was something was wrong.

Jasmine Souers:
Just to piggyback off of what Marissa is saying, that a lot of black women are affected by inflammatory breast cancer, and inflammatory breast cancer does not present the way that the traditional or the media-rized version of breast cancer. It's the complete opposite. So you have, this is again another lack of information and misinformation of what breast looks like.

Marissa Thomas:
Right.

Rebecca Seago-Coyle:
Right. So thank you for sharing that. I think that's really important to note. I think just knowing that breast cancer does not look the same in every person, I think that's something. A huge misconception too is just because we're human and we have breasts doesn't mean that we will have the same—it's not the same.

Jasmine Souers:
It's not cut and dry. Not at all.

Rebecca Seago-Coyle:
Exactly. It's not cut and dry. Thank you. Now both of you guys were diagnosed at about the same time. Is that correct?

Jasmine Souers:
I think we were about maybe a year apart.

Marissa Thomas:
Yeah, mm-hmm.

Rebecca Seago-Coyle:
How did you guys meet? I heard that you guys met through social media, but can you tell me a little bit more about how you guys got connected, because you're on opposite ends of the country?

Jasmine Souers:
We are. I fell in love with YSC. My first time was probably 2018. My mom has been my closest co-survivor, and it was probably two weeks before the Orlando Summit that I asked my mom was like, “Can you go with me?" So I went and I fell in love. Then ever since then I'm like, I have to go. It's my favorite place. It's like Disney World.

So around that time I was posting more and more. I really wanted to get more women to come out to it, because it was such an incredible organization, and I didn't really know about them until one of my metastatic friends had told me about YSC. As I'm posting around this time, Marissa messages me and she's like, "Are you going?" Yes, I'm going. We had a couple of mutual friends, so it's like, can we meet up while we're there. I remember, I think the first day I probably came in a little late, so we kind of missed each other. But over that weekend we both had kind of this really bizarre moment of feeling like outsiders among people that we knew, and we kind of hung tight that whole weekend. After we did the Summit, learning about diversity inclusion and clinical trials, we basically talked every day since then.

Marissa Thomas:
Mm-hmm.

Rebecca Seago-Coyle:
Yeah. And just to clarify, when you say YSC, we're talking about the Young Survivor Coalition. That is a really great organization that is for women who've been diagnosed with breast cancer who are younger than 45. Let's call it younger than 45ish. That's usually what I say. They have a yearly summit where they bring everyone together. I think that's really important too, because like we just said, breast cancer doesn't present the same way in every person. Someone who's been diagnosed young in your 20s or 30s is not going to have the same experience of breast cancer that maybe your mother or your grandmother who are older, maybe post-menopausal. And so, getting these women together is really a powerful thing. I think as a result of that you guys came up with For the Breast of Us. So can you tell me a little bit more about what your organization does?

Marissa Thomas:
Our organization basically brings women of color together—so African American, Hispanic, Asian, Native American, all women of color who have been affected by breast cancer so they can connect. We can inspire, and we can educate. Basically, we have women from all over the country, and we haven't anybody write from us all over the world, but we do get other parts of the world where women do actually come and look on the site. But women from all over that write stories about their different experiences, so their new normal, their treatment journeys, health, beauty. We have some what we call metastatic baddies, so women that are stage four and who are thriving. We also list events on the site. We have a resource library, and it's basically just a one stop shop for women to go and look and see other women who look exactly like them going through some of the things that they're going through and reading their stories and being inspired and connecting with them as well.

Jasmine Souers:
So our idea really with it is when we actually did a lot of research before we decided to open up For the Breast of Us, and we did research about the barriers that women of color face when they're trying to access quality treatment. Some of that was lack of communications with their doctors. Some of that is overcoming this history of medical mistrust with the community. Some of that is not being able to go into support groups and see people that look like them, and just having a supportive community can increase patient outcomes. They feel supported. So when we decided to create For the Breast of Us, it was from this place of wanting to provide women with the tools, the resources and a community to help them overcome some of those barriers. We're not just teaching each other. We bring in experts, and experts teach our women as well. We're really about equipping women so that they can be their best advocate.

Rebecca Seago-Coyle:
That's amazing. So just a reminder that your organization is called For the Breast of Us, and it's forthebreastofus.com, is that correct?

Marissa Thomas:
It's thebreastofus.com.

Rebecca Seago-Coyle:
Oh, thebreastofus.com. Before we wrap up here, I'd love to get a message of hope, or what piece of advice would you give someone if a woman of color has been diagnosed with breast cancer? What's the one thing that you want to tell them?

Marissa Thomas:
I would definitely say kind of what I said before. It's like listen to your body, listen to yourself, know yourself. Get your annual exams. Definitely research. Do what's right for you. Know that there are other women that are out there that are exactly like you who are going through the same thing. So there are other people that you can reach out to, and definitely just get your resources and research and find out what type of treatment you can have. Research doctors, all kinds of different things of that nature. Jasmine, what would you say?

Jasmine Souers:
I would say you do not have to be strong all the time. We are finding, so especially younger women of color that are suffering under the superwoman syndrome, and they are suffering in silence. I think that's one of the hardest things that you could ever do. So if you are a woman of color and you're diagnosed with breast cancer, know that you do not have to suffer in silence, and you do not have to be strong all the time. We have a community of women that totally get it without any questions asked. So you don't have to go through this alone.

Rebecca Seago-Coyle:
Yeah, I always say, “This is a club that no one ever wants to be in, but once you find your tribe of people and know who to go to for resources, it really is a very supportive community.” So I want to thank you both for joining me and talking a little bit about your stories and how you guys met, because I think the power of social media and bringing us all together has been amazing. So, thank you.

Marissa Thomas:
Thank you.

Jasmine Souers:
Thank you.

Rebecca Seago-Coyle:
I also want to say just as you guys are committed to bringing diversity to the breast cancer resources, I know there are a lot of breast cancer resources out there, but Patient Power is also committed to bringing diversity awareness to our communities as well. So, thank you very much.

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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