How For the Breast of Us is reshaping breast cancer survivorship for women of color
Marissa Thomas was 35 years old when she received her breast cancer diagnosis. Instead of retreating inward, she looked around and noticed something troubling. Black and brown women navigating the same illness were nearly invisible in the spaces meant to support them. That gap became the foundation of For the Breast of Us, the nonprofit she co-founded to bring community, advocacy, and education to women of color impacted by breast cancer.
What led you to co-found For the Breast of Us?
I was diagnosed with breast cancer myself at the age of 35. Typically young, but what we’re noticing now is that a lot of younger Black and brown women are being diagnosed with breast cancer. When I was diagnosed and going to get my treatment and doctor’s appointments, I couldn’t find any other Black and brown women who were young and diagnosed like myself. I was like, I know I’m not the only one out here, there has to be other women who are the same age as me going through the same life things, and also diagnosed with breast cancer.
So I met another young woman online who was also diagnosed with breast cancer, and her and I just started talking and were like, we should create our own group so that women of color could share resources, talk about their experiences. I was also just tired of seeing women that I had met online who were diagnosed around the same time unfortunately pass away from breast cancer.
So I wanted to help amplify our voices and get us involved in the rooms and advocacy where these decisions were being made, so we could help change the trajectory of our treatment plans and how we were treated.
One way of creating change is through Breast Cancer BaddieCon, right?
Yes, so Breast Cancer BaddieCon is what we call our patient advocate experience. It’s a three and a half day event happening in Atlanta, Georgia, and we are having women from all over the country. We actually have some women coming from outside of the country, from Nigeria and Switzerland.
It’s completely interactive. There are workshops where we’re talking about how to navigate survivorship, different types of treatment options, clinical trials. We have a lot of doctors and specialists who are coming in to talk about genetics and genomic testing, which is popular in the breast cancer world right now. And just a space where women can connect with each other and share some of their life experiences. How do you date after being diagnosed with a disease like breast cancer? Lots of different topics, body image, permanent makeup, what that looks like for you.
This year’s theme is Survivorship Reimagined. What does that mean?
Survivorship for everybody is different. We always say, as soon as you’re diagnosed, you go into survivorship. Survivorship doesn’t just happen once you finish treatment, because there are some women, unfortunately, who are diagnosed with stage 4, and they will be in treatment for the rest of their lives. If you and I were talking and you were diagnosed with breast cancer, my journey or experience is going to be totally different from yours.
So we want to help Black and Brown women be able to define what that looks like for them, and then give them the tools and resources so they can continue their journey or experience the way they need to. We’re just helping them reimagine what that looks like for them.
You talked about adding softness, joy, and celebration to survivorship. Why is that important?
When you go through something like breast cancer, it’s shocking to you. When I was going through treatment, I just had my head down the whole time, going through a valley, a lot of darkness. Then you come out on the other side, and a lot of people feel like you’re just supposed to be back to your normal, but normal for you isn’t the same anymore.
So we wanted to create just this softness, this gentleness for women to, even though survivorship may be chaotic and it’s different every single day, you can make it whatever you need it to be, and just be soft for you, and reflect on what you’ve been through and what is going to happen in your future moving forward.
Who should attend Breast Cancer BaddieCon?
I mean, literally everybody. This is our second year doing it. Last year, we had caregivers there. Even some of our vendors, like our photographers and videographers, were like, this was so impactful for me, I learned so much. There are so many different topics that we’re talking about, like body changes and body image. We’re talking about permanent makeup. When people think of permanent makeup, they automatically think of eyeliner. But a lot of us lose our eyebrows, regardless if you’ve had breast cancer or not.
If you have scars from anything, we talk about scar rejuvenation. And even just how to advocate for yourself when you go to the doctor. As Black and brown women, we’re always told that whatever the doctor says goes, and we’re teaching women that you can push back on that. You can ask questions. You are paying the doctor. They are there for you.
So anybody, whether you’re a caregiver or just in the general public, it’s open to any and everybody, no matter your age. We also love for white women or white people to come as well, because they’re what we call our accomplices. If they understand what we’re going through, then they’ll be able to help advocate with us.
When should we start testing for breast cancer and what should we look out for?
Even before testing, we need to teach young women to know about their breasts and their body. You’re in your body every single day, so if something feels off to you, you should make that decision on whether you need to tell your doctor or not. When it comes to testing, definitely doing breast self-exams as soon as you start to develop breasts.
We need to teach young girls that, when they’re 12 or 13. If you notice any changes, any discharge coming out of your nipple, any lumps or bumps, any skin changes, you need to report that to your doctor right away. We do a campaign that we call Feel It on the First, where we remind women in our community, and just people in general, because men get breast cancer as well, to on the first of the month, always just check.
And you don’t even just check your breasts, you check your neck, your collarbone, underneath your arms, because breast cancer can go to any of those areas. If you notice any changes, definitely let your doctor know right away.
How can people attend BaddieCon and support For the Breast of Us?
If you go to breastofus.com/baddiecon, you can look up all the information about Breast Cancer BaddieCon and register.
In terms of support, we definitely need all the support we can get. We are a small nonprofit trying to do big and great things, but we can only support our community with the help of others. If you go to breastofus.com and go to our donation page, you can make a donation there. If you also go on zeffy.com and search for For the Breast of Us Foundation, it’ll come up and you can easily make a donation.
Anything that you give helps with the programming for Breast Cancer BaddieCon, and helps us make sure that we get women free massages or workshop materials, and also helps us get women in the room who can’t afford it, especially in this economy.
