Will you do this with me?
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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 arm pit. 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 assess me 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 showed it was triple negative breast cancer. When a young person is diagnosed with cancer, it is standard care to do genetic testing. 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 carry a mutation on the BRCA1 gene. The geneticist explained 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 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. Just as I refused then, I refuse to give 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 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 a early childhood center at a synagogue for 5 years. In all my years in the Jewish community, I was never invited to anything education on BRCA and there was never any screening or education at a Doctors visit when the knew I was of Ashkenazi Jewish descent. Bottom line is that if I fell through the cracks, then 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 measure against cancer. Yes, there are organizations that spread awareness on BRCA, but there needs to be something out there for the individual like me and unfortunately, statistics support that there are many Abby’s out there. I am passionate about sharing my story so another young adult knows they don’t need a family history of cancer to initiate genetic testing. I want to reach people as young as possible and especially those planning for a family. My husband and I did prenatal genetic testing, which is very common for families to do. Unfortunately, BRCA is not part of reproductive genetic carrier screenings. I hear so many people say they don’t want to know if they 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 talk wake up and think about BRCA. We should educate the future parents to look at the possibility of themselves being carries and passing down a mutation for cancer. For the adult who is too scared to know if they carry a cancer related mutation, let me remind you there are things you can do to decrease your chances of cancer and it not a death sentence. What should alarm one more are the thoughts that go through ones mind when you have cancer, like, will I be here to raise my child with my husband as long as I ever dreamed of? Let’s be honest, knowledge is power and we can do better. 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.