#WeAreAllTheFaceofBreastCancer This October
BRCA1+ | ADVOCATE | PREVIVOR
In Her Own Words…
Almost all of the women on my dad’s side of the family have been diagnosed with breast and/or ovarian cancer. Once my dad tested positive for the BRCA 1 genetic mutation, it was an Oprah moment in my household. But instead of, you get a car, it became, you get a genetic test! I tested positive for the BRCA 1 genetic mutation at 22 years old. I instantly became overcome with fear and anxiety, wondering when the day would come that I would find a lump in my breast. Rather than do surveillance and feel like I was waiting for cancer, I decided to take action. In January of 2017, I chose to have a preventative double mastectomy to reduce my risk of breast cancer. I was just 24 years old and felt completely anxious, alone, and afraid but knew in my gut that I was making the right decision for my future.
When I looked for support or guidance online, I was very discouraged to see that most support groups and organizations painted the experience in a negative light, and many of the support groups that existed left me feeling worse than before I had gotten there. I struggled to find my place in the community.
Although terrified and unsure about the decision I was making, I went through with the preventative double mastectomy.
I remember coming out of surgery and being afraid to look down at my chest and worried how I would feel about my scars.
But after my double mastectomy, I looked at my body and I felt empowered, strong, and sexy! I also felt extremely grateful that I had this choice and was able to make this decision preventatively, unlike so many women in my family before me. I wanted other people to know that they too could feel like this.
I also worried about my youngest sister Cammy, who hasn’t been tested for the mutation yet because she is only 17. I knew that if she tested positive for the mutation, I wanted her to have a better experience than I did. So I made it my mission to create resources to help others navigate decisions surrounding their health and their bodies and empower them so these decisions don’t have to feel so scary and overwhelming. I want others to know that they have choices.
I started sharing my experience on Instagram and I quickly realized that there are thousands of others who felt similarly to me, and together we have created an amazing community online and in person. We call each other breast friends or Breasties for short!
Through Instagram, I was able to meet Bri and Allie — and together we have built The Breasties, a nonprofit organization that puts together free events and weekend wellness retreats and online support around the world for those impacted by breast and gynecological cancers.
What has been the most challenging part of your journey?
The most challenging part of my experience has been losing so many of my friends and the mental health aspect that I feel many people don’t talk about. As a previvor, I struggle with Previvor’s guilt. Feeling like I am incredibly lucky to be in the position that I am in, to have had the knowledge to undergo genetic testing and make the decision to undergo a mastectomy preventatively. I have lost many friends and family members to stage IV cancer throughout the years and that guilt builds up. You can’t help but ask yourself at times, why me? In those moments of guilt, I try to channel my energy into my activism and give as much of myself as I can to the community. I try not to close myself off from making new friends even when my heart feels broken and I am angry that we haven’t found a cure.
What one thing you want all breast cancer patients to know?
I want everyone to know that it is your body, so it is your choice. There is not just one “right” way to go through this experience or one “right” surgical decision and that you deserve to be presented with all of the options. If your surgeon isn’t giving you options, I hope you are empowered to ask questions and get a second opinion. I wasn’t given options when it came to my mastectomy or reconstruction and that has led to pain and discomfort. I have made it my mission to empower others to know that they do have options!
What is your superpower?
If we have met in person, you may know this, but I try to make everyone feel really seen and welcome. I love people and their stories. My superpower is really getting to know people quickly and deeply and building connection and community. It’s where the word breasties came from, the feeling like you have known each other forever even if you have only just met, you are instantly breast friends. I think community is everything.
What is your favorite movie?
It’s an oldie but a goodie — Big Fish by Tim Burton.
What is your favorite food?
I love sushi!! But I am a total foodie so I eat pretty much everything! I also have a major sweet tooth so we have to get dessert after every meal. I would say I am also a churro connoisseur. And if we go out to eat together, you can expect me to insist that we get family-style — sharing is caring!!
If you could travel anywhere in the world, where would it be?
I would say either Greece or Bali! I have never been to Greece but I have always wanted to go. I went to Bali a few years ago and it was the most healing trip of my life. I would move there if I could. It is my favorite place in the entire world.
“Quote to Come”
— author unknown
WE ARE ALL THE FACE OF BREAST CANCER