“BRCA Changed Me”

In October 2022, my husband and I had our vow renewal in Mexico. We just moved back from Italy and wanted to celebrate our 2 year anniversary with everyone who missed our wedding in 2020 (including my own parents!) Little did I know it was the last blissful trip in that chapter of my life.

The day before coming home, my parents broke the news that my dad had prostate cancer. They didn’t have details, just that his PSA was elevated. My dad was a doctor, so he just kept saying: “a lot of men live with this for a really long time.” 3 weeks later he was gone. Diagnosis? Small-Cell Prostate Cancer, which in itself is terminal and very rare. It only accounts for about 1% of prostate cancer diagnoses. By the time they found it, it had metastasized throughout his entire body. My dad’s side has a very heavy history of cancer. My grandma – breast cancer, My uncle – a rare pancreatic/renal cancer that took him before he was 50, My grandfather – AML Leukemia, which ironically my mother also fought twice (and WON). The day my father died, his oncologist encouraged me to get genetic testing done- immediately.

Honestly, I didn’t even know what I was looking for, or what I really even expected. Every doctor I’d ever been to told me that because the cancer history was heavy on my paternal side, it didn’t really impact me much. The oncologist I saw started off by saying what many do- “You’re so young!” She was confident that nothing odd was going to show up and that I was just very anxious because of everything I had been through. After that appointment her notes on my chart read: “No obvious abnormalities, but obviously still grieving the loss of father.” About one week later I got my BRCA positive diagnosis.

I was sitting on the couch at my best friend’s house. It wasn’t a big dramatic scene like you see on screens. I was told nonchalantly over the phone. Before I had my follow-up appointment, I had never heard of BRCA. After that appointment? It felt like my entire life had been derailed. [[SIDE NOTE: I have been a Type 1 Diabetic since I was 2 years old. Which has also added Hashimoto’s, Eosinophilic Asthma, and a few other autoimmune issues with it throughout the years. ]] All I could imagine was a future of being poked & prodded with constant fear. What complications will I have? Where will it show up? When? Am I going to die early too?

BRCA takes an insanely large emotional toll on not only us, but our loved ones. You are forced to make HUGE life decisions in a very short amount of time. By my 28th birthday I had already scheduled my first full body & breast MRI, my first colonoscopy, my first mammogram, my first 3d ultrasound, my first plastic surgeon appointment, my first oncologist surgeon appointments, and a few other various ones sprinkled in there- you guys know the ones I’m talking about. On my first MRI they saw “something” on my gallbladder, 3 months later it had doubled in size. I was supposed to be going to Italy with my husband and instead I was getting my gallbladder removed. 4 weeks later, I underwent my bilateral mastectomy with reconstruction. I did not get to keep my nipples. Which I knew before heading into surgery, and have found comfort in the fact 3D nipple tattoos exist.

I got thrombosis (blood clots) in both superficial veins and truthfully I think that has caused me more pain and sleepless nights then my new boobs. I was up and walking the night of my surgery-and even brushed my teeth! I was pretty confident…until the next morning when my plastic surgeon came to check on me. As soon as he opened my bra I got light headed and wanted to throw up. WHO’S BODY IS THIS?!

Personally, the drains were probably THE worst part of this whole experience. I HATED not being able to shower, I was constantly checking if output was slowing, I couldn’t move around too much and I somehow had a reaction to the tape that caused sores on BOTH sides. I don’t care to relive anything similar ever again, but I did it and I am so proud of myself. My ‘foobs’ are still mismatched, one side is struggling to heal more than the other and it has been a huge mental obstacle for me looking in the mirror. I still get light headed and nauseated. I remind myself daily that I have a long road of (much-needed) healing ahead of me.

My preventative total hysterectomy will be within the next 2 years, so screening it is! One of the most asked questions is “how are you?” I always kind of laugh to myself because I really don’t know the answer.

I am OK, but I am NOT okay. I don’t know if I will ever be “ok” again. I just am. I will never be the same person I was before. BRCA has forever changed me. I have forever promised my body to go above and beyond to dodge or beat cancer before it finds me. So, I guess the answer to that question could be I am exhausted. I am angry. I am grieving. I am confused. I am heartbroken. I am scared. I am relieved. I am empowered. I am all of those things and more, sometimes all within the same 24 hour period.

I am trying to love my body again. Not just how it looks, but to love it even though I feel like it has failed me in a way. Once I’m on the other side of the preventative part of my journey, I’d really love to get more involved with supporting others diagnosed with BRCA + autoimmune diseases. As well as, support efforts in making BRCA a more recognizable diagnosis.

– Lauren Papa