CDH1: A Year in Review
Updated: Jun 7, 2019
I want to start with a quick update. Today I officially graduated from radiation. Yes, I had my last treatment on May 17, 2019, but they don't joke around when they warn you your skin could get worse before it gets better after you finish. About a week after I finished treatments, a huge section of skin along my mastectomy scar line blistered, peeled, and proceeded to turn into an open wound. My radiation oncologist saw me right away, she had warned me it was a possibility, and has kept a very close eye on me since. I have been nursing the wound with salt water soaks, prescription ointments, and keeping it bandaged to heal. Today, it is about 99% healed. Luckily, I avoided an infection, and the wound remained fairly superficial so the implant wasn't affected. Phew!!
Let me start off by saying, HOW THE HECK HAS IT BEEN OVER A YEAR SINCE I FOUND OUT I AM A MUTANT! That is what I am calling myself these days, in case you were wondering. It sounds cooler than telling people that I have breast cancer and stomach cancer because of a hereditary gene defect. For reference, here is a link to my initial CDH1 post from 2018 titled, Genetics shocker- CDH1 pathogenic variant positive.
In creating this new, and hopefully improved, website, I have had the opportunity to go back through some of my old posts, and my how things have changed. It is giving me the chance to update and revisit things that might not be as clear as I would like them to be. That is ultimately the problem with writing in real-time. Things change, and because I want this to be an authentic depiction of my story, I can't just go back and edit posts because like real life, I want them to show my history. So, I have to write new posts, organize this site, and find a way to organize everything so that you, the reader, can make sense of it all. I hope I am doing that justice through the creation of this new website. And, at least you now know my intentions behind this revamping.
Ok, where to begin. One night, probably when I couldn't sleep (thanks menopause), I thought to myself, I need to see if there are any support groups for people like me, mutants. So, I got to searching and one thing led to another and I found myself requesting to be accepted into a private facebook group for CDH1 mutation carriers. Once I was accepted into the group, I started to learn instantly and was amazed by the support and inspiring stories. I learned about a clinical study being conducted through the National Institute of Health/National Cancer Institute (NIH/NCI) specifically for individuals with CDH1. Remember how a year ago I said, "As a person who is studying public health, I feel it is my duty to add to the data?" Well, this was my chance. I contacted the research coordinator, filled out a bunch of paperwork, signed some releases and consents, and that was it. I was accepted into the study.
In December 2018, Andy and I traveled out to Bethesda, Maryland for my initial appointment at the NIH. I had a full day of tests, met the entire clinical team, and had an endoscopy with stomach mapping procedure where numerous (about 88?) biopsies were taken from my stomach. A few weeks later, I received the phone call with the biopsy results. It was confirmed that I have stage 1 cancerous cells (signet ring cells) within the lining of my stomach. This means, the goal of total gastrectomy is no longer preventative, but hopefully curative.
Because I am just finishing the majority of my breast cancer treatments now, I have been unable to move forward with the total gastrectomy. I will be traveling back to NIH next week (June 12-14, 2019) to have another endoscopy with biopsies to make sure everything still looks ok, and we will discuss when to schedule surgery. My doctor out there says I should rest and heal from all the trauma my body has been put through the past 15 months and be in as good of shape as possible when heading into surgery. Makes sense to me, but I also can't help but worry about what is going on in my stomach. Without having to worry about the breast cancer stuff as much, the stomach cancer stuff is creeping into my mind. Although I am scared and sad that I will have to say goodbye to my stomach, I also have this feeling that I won't feel confident about my ability to move on until it is out of me. I have this constant nagging feeling that it will betray me at any moment....so it has to go!
Another update from my original CDH1 post, is that my breast cancer diagnosis was officially recategorized to invasive lobular carcinoma (ILC)- pleomorphic type. The pathologists took a look at my tumor after my double mastectomy, and took into account my CDH1 diagnosis - new information to the pathologist, and they decided it was better classified as ILC, not invasive ductal carcinoma (IDC) as originally diagnosed. My oncologist said this often happens because biopsies can only see so much. It isn't until the entire tumor and surrounding tissue is examined that the whole picture comes into focus. Luckily, this didn't change my treatment plan for the most part. Although traditionally ILC should be treated differently than IDC, this is not the case with me because the pleomorphic subtype means it was fast growing and aggressive and acted more like IDC than ILC. Hope that makes sense. ILC is most commonly slow growing, found in older populations, and not as aggressive as IDC, but my ILC subtype was unique and rare (go figure).
So, as you can tell, I am coming to terms with having my stomach removed. I have been eating and drinking to my heart's content and have also been slowly getting back to working out and getting in better physical shape following all my sitting around the past year. Thank you YMCA for starting me off right! I hope to turn some of this breast cancer weight gain into muscle and stamina before surgery. Stay tuned.