October is Breast Cancer Awareness Month— the time of year where we collectively increase attention and support for the awareness, early detection and treatment of a disease that affects 13% of women worldwide.
Through meeting our inspirational friends Marissa Thomas and Jasmine Dionne of For the Breast of Us, we learned that while there’s been progress in the past few years— breast cancer continues to disproportionately affect women of color. Not only are Black women at greater risk of dying of the disease, but they're represented within only a small percentage of clinical trials.
Inspired by their own experiences with breast cancer, Marissa and Jasmine joined forces to build an incredible online community to not only share uplifting stories, but to provide education, resources and clinical research opportunities for women of color. Helping to dismantle barriers to quality healthcare all while providing spaces for women to reconnect with their bodies, we cannot wait for you to meet Marissa and Jasmine.
Hey Marissa and Jasmine! Can you share a bit about your own breast cancer journeys?
Marissa: I was diagnosed at age 35 with stage II DCIS 35% ER + breast cancer in November 2015. My treatment included a lumpectomy, chemo (A/C, Taxol) radiation and two breast reconstruction surgeries. I found the lump myself while putting on lotion after showering, and I’m currently being monitored with alternating MRI/Mammograms every 6 months and closely followed by my oncologist. I opted out of hormone therapy due to the low percentage of estrogen found in my tumor.
Jasmine: After initially being misdiagnosed at the age of 25, I was diagnosed 6 months later with stage I breast cancer at the age of 26. Staging was complicated as I had multiple multicentric tumors across 9 cm of breast tissue. In the end, I decided to forgo chemotherapy, and opted for a bi-lateral mastectomy with reconstruction, proton therapy radiation and hormone treatment for the next 10 years.
📷 : @shudluck via @forthebreastofus
What was the motivation behind starting For the Breast of Us?
Two things come to mind when we think of the reason why. First would be the fact that when we were diagnosed, there was nothing like For the Breast of Us. It’s the first online community for women of color affected by breast cancer— a place where all women of color can bond over shared experiences and find women who look like them from previvor to metavivor and everyone in between. Like us, women wanted a place online where they could read similar experiences like theirs, in hopes it would have made us feel not so alone.
Jasmine: I was struck by the difficulty of finding imagery of women of color having undergone mastectomies or radiation. And it was equally difficult to find stories about women of color navigating the disease. To me, it just didn’t make sense for either of those things to still be an issue in 2019.
Marissa: And I was tired of seeing Black and Hispanic women whom I would meet online, being diagnosed with metastatic breast cancer. I thought if others could see these women and their stories, they would pay attention and realize this is an urgent issue.
Why do you think this community is so important?
We did a lot of research about the barriers to quality healthcare for women of color before we started and we combined that with our personal experiences to determine what kind of space we wanted to create. There are a few communities struggling to be heard, but there wasn’t anything that allowed women from various minority groups to stand on the shoulders of their sisters and propel each other forward.
📷 : @_jacquelinevaughn via @forthebreastofus
The original goal of For the Breast of Us was to uplift women of color by sharing stories that educate, inspire and connect— but we do so much more than that these days. We provide a safe space for women of color to learn from each other and industry experts so they can make informed decisions about their treatment. We provide education about clinical trials and recruit women to participate in medical research so our experiences can be included in the larger breast cancer narrative.
We also provide a close knit community for personal interaction through our private Facebook Group: Breast Cancer Baddies and host a monthly Facebook Live podcast called Baddies Talk Back that discusses real issues we’re facing like dating, mental health and grief. We want to do our part to help women of color overcome the barriers to quality healthcare.
Can you tell us about the Naked Truth Project?
The Naked Truth Project is a photo gallery that not only showcases imagery of women of color affected by breast cancer, but also shares their unique perspective on their post-cancer bodies. It was created to share photos that women of color have been desperately seeking for decades— that validates a variety of our experiences without judgement.
We wanted to create something special where women of all ages and cancer stages could stand firm in their own strength or sorrow about the changes happening to their bodies after a breast cancer diagnosis. We always tell women to feel how they feel and that reconnecting with our bodies after a traumatic experience is an important, and often overlooked, aspect of mental health for cancer survivors. It’s not vain to care about how your body looks after treatment and “normal” is however you feel! We promise there’s someone out there who feels the exact same way.
How can WOC get involved with For the Breast of Us?
The easiest way women of color affected by breast cancer can get involved is following us on Facebook, Instagram and Twitter and reading the stories of fellow Baddies on breastofus.com.
📷 : @thriving_iv_life via @forthebreastofus
If they are looking to more closely connect with other Baddies, we invite them to join our private Facebook group, Breast Cancer Baddies. It’s more than 600 Baddies strong of various ethnicities, ages and stages.
For those ready to get involved in the larger breast cancer community, we have a Baddie Directory where women of color can express how they’d like to be engaged from interviews to research. It’s dynamic, searchable and makes it easy for people who want to be intentional about their diversity and inclusion efforts.
How has building this community helped your own wellness journey?
For the Breast of Us has given both of us a chance to create purpose from painful experiences, allowing us to use our unique strengths and talents to help women diagnosed better navigate their journeys. Being so involved in a community that experiences constant loss has forced us to be mindful of our own personal boundaries and mental health. And because we’re always learning through advocacy and research, we’re always teaching ourselves and our community tips and tricks we learn along the way.
What are you both the proudest of?
Just the way the community has grown and embraced us. We always say there’s no us without them and it’s absolutely true. Recently, we were nominated and endorsed by our community for the WeGoHealth Best Kept Secret Award. We were completely shocked that we won so early in the establishment of our business, but we are beyond blessed and thankful for every opportunity and every time someone recognizes this!