I chose the name “My Pink Genes” because, for one, pink is my favorite color, and for another, I was diagnosed with a highly aggressive form of stage 3a breast cancer in 2018 at 32 years of age (grade 3 invasive lobular carcinoma - pleomorphic type ER-, PR+, HER2- in cancer speak).
Pink being the color of the breast cancer ribbon seemed fitting. The “genes” portion comes into play because after my diagnosis, I had genetic testing and found out I am a mutant! No, not the cool kind! I am positive for a pathogenic variant in CDH1 which is associated with an increased risk for lobular breast cancer and hereditary diffuse gastric cancer (a rare and very deadly form of stomach cancer).
Because of the rarity of this gene (CDH1), I am part of a clinical study at the National Institutes of Health in Bethesda Maryland. And, after an endoscopy with stomach mapping procedure in December 2018, I found out I have stage 1 cancerous cells (poorly differentiated carcinoma with signet ring cell features) residing within the lining of my stomach. I am grateful this cancer was found, because diffuse gastric cancer is very difficult to find via screening techniques - it doesn't form a tumor like other gastric cancers, very rarely causes any symptoms until the cancer has already progressed, and is very aggressive and deadly.
Quoting my doctor after my first endoscopy and biopsies procedure, "It is like finding a needle in a haystack. And, we found it!" This left me with two options: 1) Have a total gastrectomy (yes, you read that correctly, have my entire stomach removed to hopefully cure me and prevent further gastric cancer); or 2) Wait and see, while having screening biopsies taken every 6 months. And, keep in mind screening is very unreliable with this type of cancer. Having already dealt with advanced cancer once, I chose option #1. I had my total gastrectomy performed on September 12, 2019 at the National Institutes of Health. Surgical pathology showed, "Stomach, total gastrectomy: Signet ring cell adenocarcinoma,
intramucosal, 2 foci, 0.4 mm and 0.05 mm. Eleven lymph nodes free of tumor (0/11)." Total gastrectomy was considered curative at stage 1a with clear margins and clear lymph nodes.
Before my total gastrectomy, I went a little crazy with food, and I started the hashtag: #mystomachbucketlist on social media to document some of my food endeavors. I will now shift those accounts back to healing, and relearning how to eat following surgery. Feel free to follow along on Instagram and/or Facebook (links below).
I have been blogging since my breast cancer diagnosis on February 27, 2018. Since writing and journaling have always been a positive stress reliever in my life, I have found joy and purpose through writing. I initially wanted to keep friends and family updated, and writing is easier than trying to keep up with phone calls and such. But, I also had this burning desire to share my story so that others seeking information or inspiration can follow along in real time. And so far, it has served both of these purposes well.
When I was first diagnosed, I frantically searched for young men and women with a presence online with similar diagnoses, and it was difficult. For one, I am pretty young to have cancer, and I have pretty rare forms of both breast and stomach cancers, not to mention the CDH1 gene mutation. I found a few young men and women, however, going through similar situations and it was absolutely inspiring! I finally felt like someone else knew what I was going through, and it made it that much less scary.
So, if I can help at least one person out there searching for answers, or comfort, or someone who just gets it, or in knowing you are not alone, then this will all be worth it. Working in public health and helping professions for my entire career means I am a strong empath, and I care deeply about those around me. So this blog is just another way for me to give back and hopefully help someone out there in need.
Be sure to follow me as I embark on this breastless and stomachless voyage. I promise to be honest and real, and hopefully give you a glimpse in to my world. I look forward to interacting and hearing from you.
Here's to new beginnings,