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The Breasties: On Starting An Organization for Young Women In The Cancer Community

 

 

The Breasties is a nonprofit organization dedicated to supporting young women affected by breast and reproductive cancers through community and friendship.

 

This interview is with the founders of The Breasties: Brianna Majsiak, Leslie Almiron, Paige More, and Allie Brudner. These 

 

Tell us a little about you and your organization. How did The Breasties get started? How did the founders meet? The four of us each have been directly affected by breast cancer at a young age. Allie and Leslie were both diagnosed with breast cancer in their twenties - Allie was diagnosed at 28 years old and despite her minimal family history found out she carries the BRCA1 gene mutation. Leslie was diagnosed at 23 years old, a month before graduating from college. They both went through aggressive treatment (chemotherapy, surgery, radiation) and are so grateful to say they are now cancer free. Paige tested positive for the BRCA1 mutation and due to her high family risk of breast and ovarian cancer she made the decision to get a prophylactic double mastectomy at 24 years old. Bri lost her mom to breast cancer when she was 5, and has always been aware of her increased risk. She recently tested positive for a lesser known gene mutation (MUTYH), and is in the process of navigating surgery and making prophylactic decisions.

 

The four of us met online through Instagram less than a year ago. Paige started bravely sharing her story through her Instagram, only days after having her prophylactic mastectomy to help help other women know they weren’t alone and in the hopes of starting a community. Allie won an Instagram giveaway to go with Paige to an event which Leslie happened to be at. And Bri met Paige while writing her thesis about young women affected by BRCA.


The four of us were channeling our energy in similar ways - supporting and connecting with other young women affected by breast cancer and in January of 2018 we decided it would be fun to take 20 women to the Poconos for the weekend who were going through similar experiences as us. Camelback graciously donated a weekend of skiing and snowboarding - we spent the weekend healing, as we bonded with other young women in similar experiences and showed our bodies that we are capable of so much more than just getting sick. When we returned home we had over 300 women reaching out and applying to come on future retreats. So, we incorporated as an official 501(c)3 organization in February of 2018. Since then, we've hosted 7 retreats (with 3 more on the calendar for this year), Camp Breastie (with over 400 attendees) and have hosted hundreds of events across the world - we have chapters with Breastie Ambassadors hosting meetups in over 30 cities and counting!

 

 

As a young woman facing a cancer diagnosis or genetic mutation that makes you high risk, it can be really hard to make sense of where you go from there. Your medical team will guide you in terms of your physical health, but once you are deemed “healthy” - it is not always an easy adjustment. Everything changes - your body is different from surgeries/treatments, you have new worries/fears, your whole perspective might even shift - it is hard to adjust to this “new normal.” We hope that our events and retreats can provide Breasties with the tools they need to find their new normal. From CBD that can help with the anxieties/fears of recurrence to yoga that helps with flexibility and breathing after surgery - it is important to us that we provide these events for free so Breasties can attend and try something new no matter the cost. We believe that working on your mental health and loving your new body is a huge part of feeling healthy and strong. 

 

There are so many organizations that exist that focus on research and medicine, which is fantastic, but we each noticed a huge gap out there for support. In our own journeys, we all felt a huge need to connect with other women that “get it” - it’s how the four of us met - to not feel alone, to feel welcomed, to find a sense of belonging. Emotional health and spiritual health is a big part of that. 

 

You. Are. All. Amazing. Do you recall the moment that you found out that you had cancer/the genes? What were those experiences like for you? All of our stories are different - we have different diagnoses and different stories about that moment when we received "the call." One thing that resonates and holds true for each of us, is that feeling of shock, disbelief.  The feeling of being alone, despite having an incredible support system of friends and family rallying behind us. While that call, and going through testing, treatments, and surgeries, were all difficult – the greatest hardship for was all of us, was that feeling of isolation.


How did you first get involved with cancer advocacy / how do you identify as Cancer Advocate?

We never really intended to be cancer advocates but I think that anybody impacted by cancer inherently becomes one. Whether it's spreading awareness for early detection, gene mutations, clinical trials, healthcare and insurance access, or anything that you found to be a barrier in your cancer or high-risk journey, you want to do everything you can to change that and help others know what options are out there and to be your own best advocate. Unfortunately, a common conversation in our community are barriers surrounding treatment, detection, and healthcare accessibility. 

 

Something we feel extremely passionate about is ending the divisiveness that exists between people within the cancer community of different diagnosis, backgrounds and experiences. That's why we created the word "Breasties" to represent the feeling of meeting someone for the first time and feeling like you are instantly "best friends" because they just "get it." Whether you're impacted by breast cancer, gynecological cancer, a survivor, previvor, thriver or caregiver, there's room for all of us. There's so much to learn by coming together and we're determined to keep working towards that. 

 

What is/was the most challenging aspect of starting this organization? It is hard to maintain a balance of self-care when you are committing your time to caring for others. At times it is hard to separate your life from cancer, when you are so deep in this world and are spending your free time creating this community. I think for each of us, it is a separate challenge, but setting our own boundaries and communicating openly with one another about what's working and what isn't has been really helpful. Also - just getting into a routine of self care. (Allie contributed to this article... see more here.)

 

 

What has been/was a rewarding aspect of experiencing this journey with The Breasties?

Meeting so many incredible Breasties who are moving mountains every day. Although our journeys to get here have been really hard, it brings a sense of peace knowing that we can find gratitude that our journeys have brought us to this unstoppable community. 

 

Everyone and anyone is able to be a “Breastie” that’s why we chose that name. We wanted something that explains that feeling of instantly connecting with someone who gets it. There is no other word for the feeling you get when you meet someone for the first time who just understand what you’ve gone through and you instantly feel like you have been Breast Friends for years - you are Breasties! Not everyone resonates with being labeled a survivor or previvor or thriver or carevivor, because it can feel limiting. These lines / these labels, aren't so clear cut. The Breasties is an all inclusive community, and anyone affected by breast or gynecologic cancer is welcome.  Anyone who resonates with our mission and wants to feel empowered and strong and uplifted by other women, and help others to rise as well, is a part of this movement. 

 

Was is one piece of advice you’d give to girls who have not been tested? Our mission and greatest passion is for all women to know that they are not alone. We want to empower women through community and a sense of belonging. There are so many women out there going through the same if not similar experiences, thinking that they are the only young person going through this. We want to show them that not only is there an incredible community online for them, we are also here creating spaces for them to find their tribe and meet their breast friends in person! 

 

We recommend that ALL women know their risk. Know your body. Know your family history. Get genetic testing. Genes can be passed down from your father’s side, not just your mother’s. Allie and Paige both inherited their BRCA mutations from their dads. Three out of the four of us cofounders all carry a harmful genetic mutation that increases our cancer risk. There are also many more genes other than BRCA that put women at a genetic disposition to breast and gynecologic cancers and they are coming to the forefront as well. 

 

We want women to know that they do not have to be scared of their bodies or their risk of cancer. When you have friends who understand and support you and have already gone through it, we believe that helps alleviate some of the fear. If you are too scared to get genetic testing, ask yourself where that fear is coming from. Reach out to us or to other people on Instagram who are sharing their story and allow them to be here for you. And at the very least, look up how to give yourself an at-home breast exam and check your breasts monthly. 

 

What book, film, or podcast, would you recommend to others? (Perhaps it relates to illness, or just inspired you in another way.)

Books: 

    • Dare to Lead by Brene Brown  

    • The Dead Moms Club: A Memoir about Death, Grief & Surviving the Mother of All Losses by Kate Spencer

    • You Are A Badass by Jen Sincero

    • Option B by Sheryl Sandberg 

    • Year of Yes by Shonda Rhimes 

Bri wrote this article on favorite books for coping with loss: https://www.everydayhealth.com/emotional-health/read-books-help-you-cope-with-death-loved-one/.

 

Podcast: 

  • Oprah's SuperSoul Conversations

If there is one piece of advice you could give young people with an ill parent, what would that be? For young people with an ill parent, I think it's most important to not lose yourself in being a caregiver, especially when you're suddenly the one taking care of the person who took care of you. To understand that you really need to be okay in order to be there for your parent in the fullest way. 

 

What keeps you inspired?

The community without-a-doubt inspires us. Each and every day Breasties share photos on Instagram of them meeting for the first time, hosting meetups in their communities, asking each other for help and prayers, sharing photos of their scars, surgery dates and from their chairs in chemotherapy. It's upsetting that so many people are impacted by this disease but it's the greatest silver lining to see so many of us rallying behind one another, more often than not, having never even met. 

 

To learn more about The Breasties, please visit their website here or follow them on IG at @the_breasties.

 

 

 

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