I wanted to share my story on my breast cancer diagnosis and mission. Before I share my story, I wanted you to know I am 35 (was diagnosed at 35), married to my husband Seth, and we have a 6 year old daughter, Yael. We live just outside of Philadelphia and I am a pediatric Speech-Language Pathologist.
My story began May 2019 when I informed my gynecologists at a routine visit that I had left sided breast pain. I also showed this Doctor where I felt I had a lump. The pain was interrupting my sleep and cuddling with my daughter due to tenderness in my inner arm and armpit. The Doctor gave me a script for both a mammogram and ultrasound, which showed dense and fibrous tissue. They said the reasoning for my pain was likely hormonal. The recommendation was to come back in a year, but I was both hesitant and trying to trust the process. Fast forward to March 2020 and we were facing a global pandemic. I was washing in the shower when I found a pea size lump in my armpit. I frantically asked my husband to feel it and he thought it felt like the other cysts that were on my body, as I am a very cystic person to begin with. My annual gynecologist appointment was canceled in May due to the pandemic and I just kept that little lump on surveillance, but then July 2020 hit and that’s where my story takes a turn. I woke up one morning in July to this lump that now felt like it had quadrupled and hardened. I knew in my gut this was bad and I found myself asking my neighbors to feel it. All advised me to get it checked ASAP and I did. I had a different gynecologist do a breast exam and she sent me right for imaging and biopsies.
On 8/5/20, I got a phone call saying my biopsy showed breast cancer. Further pathology and imaging showed it was triple negative breast cancer (TNBC) and stage 2. When a young person is diagnosed with cancer, it is standard care to do genetic testing so I followed through with this. I was told that I likely had a BRCA mutation due to my age, being of Ashkenazi Jewish descent, and having a TNBC diagnosis. Results revealed that I did indeed carry a mutation on the BRCA1 gene and what this meant for me. The geneticist also expressed that it was likely my Dad who carried the mutation and here is why. As if my cancer diagnosis wasn’t enough, on the same day I was diagnosed and within the same hour to be exact, my Dad and I both got calls that we had cancer, his being prostate. We were prepared to hear he was the carrier until we found he was not, but it was instead my Mom. Now, we were dealing with more than we could have ever imagined. 3 individuals, two cancer diagnoses, and two mutation carriers. I felt like the rug had been pulled out from under me. Our lives were turned upside down in the blink of an eye and it felt like cancer was trying to rob us of life; however, just as I refused then, I still refuse to allow cancer to take any of us down. It felt like our cancer and mutations had purpose. So, rather than drown in my woes, I became very interested in how this happened and if I could do anything to save the next person/family from experiencing this. Some important background knowledge is that I am a young Jewish girl who went to Hebrew school and was involved in the Jewish community. Later in life, I sent my daughter to an early childhood center at a synagogue for 5 years. In all my years in the Jewish community, I was never invited to anything educational on BRCA and there was never any screening or education at a Doctor visit when those health professionals knew I was of Ashkenazi Jewish descent. Bottom line is that if I fell through the cracks all of the years and so many others can easily do so.
Now I feel strongly about educating young women and men on the BRCA mutations, so every adult knows how to advocate for themselves and take preventive measures against cancer. Yes, there are wonderful organizations that spread awareness on BRCA, but there needs to be something out there for the individual like me who has no family history of cancer and has this mutation hiding in them and waiting to fire. Unfortunately, statistics support that there are many Abby’s out there.
I will continue to share my story so other young adults know how to initiate genetic testing with or without a family history of cancer. I want to reach people as young as possible and especially those planning for a family. My husband and I did prenatal genetic testing before I got pregnant in 2014, which is very common for families to do and I encourage that to this day. Now knowing that BRCA is not part of reproductive genetic carrier screenings, I am VERY passionate about this being part of a panel one day. I hear so many people say they don’t want to know if they or their future children are at risk for cancer because it is too scary. What if I told you that my daughter now has a 50% chance of this awful genetic mutation and we won’t know if she is a carrier until she’s an adult and gets tested, and that is if she agrees to it. It pains me. Just as one wants to know their risks for giving their future child a syndrome and/or other rare diseases, let’s wake up and think about BRCA, which is just as devastating as any other disease being routinely screened for on these panels. Every future parent should have the choice of screening themselves being carriers and the potential for passing down a mutation for cancer. Don’t allow the possibility of cancer to alarm you when you can do so much to prevent it. I wish I had the opportunity to take preventative measures, but now I sit here and have to face questions such as, “Will I be here to raise my child with my husband as long as I dreamed of prior to cancer?” Knowledge is power and every young adult can use this information to make sure they do their best to live a full life without cancer. So, I will fight for the woman who wants a genetic screening kit but can’t afford it. Or the woman who wants screening because she believes she is high risk, but her doctors assure her she is fine. I will fight for all of you and your children because nobody should have to wait for cancer to find them first.
Thank you for reading and the consideration of sharing my story. With love and gratitude. ~ Abby M.