HOW TO MAKE FRIENDS IN THE BREAST CANCER COMMUNITY
Thanks to Genentech for partnering with me on this sponsored post.
In 2015 I underwent genetic testing and tested positive for the BRCA 1 variant.
“You have as high as an 85% chance of developing breast cancer in your lifetime,” my HCP explained. “You will begin intensive surveillance now for the rest of your life. We will stay on top of it. When we find something, it will be early, and we will take action.”
My life forever changed and I was absolutely terrified. I felt like I had two ticking time bombs strapped to my chest. It didn’t feel like an if, it felt like a when. This wasn’t just taking a toll on me physically, but mentally as well.
In 2017, at 24 years old, I decided to undergo a preventative bilateral mastectomy to reduce my risk of developing breast cancer. My mental health faced numerous challenges in those two years of doing surveillance. I was anxious, I felt overwhelmed and I struggled. The hardest part for me was keeping a brave face. I didn’t know any “breast friends” or Breasties yet and my friends and family, while they tried to be supportive, couldn’t fully wrap their heads around what I was going through or the tough decision-making I was navigating.
While I haven’t been diagnosed with breast cancer, everyone’s breast cancer journey is unique, and diagnosis and treatment can affect each patient’s mental wellbeing differently. I didn’t have anyone to talk to that had been through the same experiences and I constantly wondered if I was making the right decisions. I didn’t fully understand everything my HCPs were explaining to me so I didn’t know what questions to ask. I didn’t feel in control at all.
I cried myself to sleep most nights and could barely look in the mirror. I hated getting dressed because I no longer felt like my body was my own. I was afraid of being intimate for fear of finding a lump.
I tried to find a support group or a friend to talk to online that I could relate to, but everything I found was pretty negative and made me feel worse. Some articles warned me that I would hate my scars, that I would struggle to find a partner that would love and accept me, and that my mental health would only continue to decline.
Based on the opinion of my HCP, I decided to have the surgery.
When I woke up from my bilateral mastectomy, I remember looking down at my scars and feeling so proud of myself for making this tough decision. I did everything I could to prevent cancer through this surgery, and I found that empowering and sexy. I was stronger than I thought I was.
In the weeks that would follow, I would continue to struggle with my mental health. My anxiety was in full force as a deep sadness. Something new to me. Even though it didn’t feel natural for me to publicly share my story, I started posting on Instagram because I wanted others to know that if I could make this decision, they could too. I also wanted others to know they didn’t have to feel as alone. There were already so many things I had learned that I wish someone had told me before my surgery, I knew I needed to share these experiences with others to try to help them.
By sharing my story on Instagram, I was able to connect with thousands of other people like me, we call ourselves the Breasties.
We would spend hours talking online, on the phone, and then eventually in person about anything and everything. Our personal journeys– whether a genetic mutation, family history, or cancer diagnosis – is often the entry point and what brings us together but we end up connecting over so much more.
What you’ll come to find out is that once you are impacted by a genetic mutation, diagnosis, or family history, you are never “done” just because treatment has ended, surgery has passed, or your scars have healed. You are forever changed and you are impacted for life.
Over the past 5 years, I have leaned on my Breasties for nearly every stage of life. From how to navigate dating after surgery, what questions to ask my HCPs for my appointments, what to do when I found a lump a few months ago, to as basic as which bra is best for post-surgery… my Breasties have been here for me every step of the way.
If you haven’t found your community yet, please know they are out there, keep trying!
Here are some tips / things that helped me find the support I needed:
SHARE YOUR STORY
One of the best ways to find and connect with others in the community is by putting yourself out there! I always say, if you can’t find the person you so badly need, sometimes we have to become that person. I needed to see someone who felt proud of their scars, who loved their body and was living a full life. So that’s what I shared! Whatever YOU need, YOU should share and you will be amazed by how many people you are able to connect with. If I never shared my story, I would never be able to partner with a company like Genentech to speak on the mental health challenges so many of us face on a day to day basis.
REACH OUT
I get it, sharing our stories is hard and can feel intimidating. If putting yourself out there in that way isn’t for you, reach out to those in the community that ARE sharing their stories that you resonate with! Trust me, as someone that does share their story, we LOVE connecting with other people in the community and making new friends. Believe it or not, I have made most of my friends in the community through Instagram! Reach out by commenting on their posts, sending a direct message, or writing them an email. Put yourself out there and you will be amazed at what comes of it.
CHAT IN THE COMMENTS
Speaking of comments, an amazing way to connect with other people in the community is in the comments section on posts of other community members! If there is a post that you really resonate with, head to the comment section and read through the comments from other people. There you can find others that you vibe with and you can either comment directly to their comment to start a conversation, or you can send them a direct message. I promise this isn’t weird, it is an easy way to make new connections and friendships
JOIN MEET UPS
There are so many incredible support groups and nonprofits that host in-person meet ups! You can ask your HCP to connect you with other support groups. For some in the breast cancer community,, joining a support group can be helpful because you can talk to other people with shared experiences. For those seeking resources and support, talking to a HCP may be beneficial!
I hope these tips help you feel more connected to the community and less alone. Sending you all my love, and I am always here if you need someone to talk to!
Thank you again to Genentech for encouraging me to share my story on such an important topic, like mental health that so many of us are facing day to day. It’s important for those impacted by breast cancer to prioritize their mental health, as well as their physical health during and after they go through the various stages of diagnosis, treatment and recovery. If you’d like to learn more about the advances in breast cancer and patient stories visit the Genentech Breast Cancer Hub.