I am not a blogger. I am not an influencer. I am barely a millennial. But, I have been presented with a very unique situation and am starting this written chronicle for a couple reasons.
First, when I received my diagnosis, I scoured the internet for others like me. I appreciate that strangers allowed me to have a peek into their life so that I could make sense of what was going on in my own. Also, beyond my diagnosis, I know what real pain and grief feel like. It is my hope that if you’re hurting with any ailment (physical or emotional), you can find a friend here. You are not alone.
Finally, isn’t this what we do now? We share our unaltered, unfiltered, uninhibited thoughts with all the world on a permanent platform like this?
See, told you. I’m not a real millennial…I’m not using a filter.
Where should we start? I guess introductions are in order. My name is Kathryn and at thirty years old, I was told that my health depends on having my complete stomach removed.
Go back. Read that again.
Yep. My WHOLE stomach. Now, I know you probably have a lot of questions (what will you eat, how will you exists…etc.) and I will try to be as detailed as possible with the knowledge I have. But let’s first get a little bit of history. After all, having one’s stomach removed seems a *little* dramatic.
My paternal great-grandmother and grandmother both passed away very early in life. We are talking 30s and 40s. With genetic testing gaining traction, my dad’s twin sister sought the counsel of a geneticist who informed her that we carry a mutation to our CDH1 gene.
I’m sorry, what?
Stick with me for a minute. Oh, but wait. First, a disclaimer. I am not a doctor, I have absolutely no medical training (other than 15 seasons of Grey’s Anatomy), and should not be seen as a medical resource. I will share what the doctors have told me and what I have researched…but y’all…I barely understand this all myself. I will always cite where I find my information versus an original analogy.
Now that we have that out of the way, it’s back to business. The CDH1 gene, when functioning normally, leads the charge on the body’s formation of a protein named E-cadherin. Yeah, I know…this is some fun stuff. Instead of me trying to explain it, here is how the National Institute of Health (NIH) describes this protein.
E-cadherin is one of the best-understood cadherin proteins. In addition to its role in cell adhesion, E-cadherin is involved in transmitting chemical signals within cells, controlling cell maturation and movement, and regulating the activity of certain genes. Interactions between the E-cadherin and p120-catenin proteins, in particular, are thought to be important for normal development of the head and face (craniofacial development), including the eyelids and teeth. E-cadherin also acts as a tumor suppressor protein, which means it prevents cells from growing and dividing too rapidly or in an uncontrolled way.https://ghr.nlm.nih.gov/gene/CDH1#conditions
Still with me? Just checking. Even I dozed off there for a minute. OK, so that last line is really important. Basically the formation of this protein helps the body’s ability to prevent cells from going rogue and causing tumors. So that’s a good thing! Thank your body for the CDH1 gene. I’ll wait.
But what happens when that gene forms a mutation? What happens when it gets a little wild and crazy? Well, it’s not good. A mutated CDH1 gene can lead to Hereditary Diffuse Gastric Cancer (HDGC). Great, another acronym! Let’s go back to NIH for more details. Over to you, NIH…
The mutations that cause HDGC often lead to the production of an abnormally short, nonfunctional version of the E-cadherin protein or lead to the production of a protein with an altered structure. The loss of normal E-cadherin prevents it from acting as a tumor suppressor, contributing to the uncontrollable growth and division of cells. A lack of E-cadherin impairs cell adhesion, increasing the likelihood that cancer cells will invade the stomach wall and small clusters of cancer cells will metastasize into nearby tissues. In combination, the inherited and somatic mutations lead to a lack of functional E-cadherin and result in HDGC.https://ghr.nlm.nih.gov/gene/CDH1#conditions
You got that, right?
Basically, my body lacks the proper leadership for the E-cadherin to know what it is supposed to do and starts to form cancerous cells in the stomach wall lining, which form in the shape of signet rings. And then they sit there. And sit there. And sit there. And then…POUNCE. Diffuse. Whooooosh through the whole stomach lining and you’re looking at Stage IV stomach cancer. What makes it pounce? No one knows yet. Awesome.
Whoa. We just went from talking about protein to cancer a little too quickly. I know, it’s shocking to me, too. The community can’t really agree on the percentages, but Dr. Davis at NIH described it to me like this: having this mutation puts me at a 90% chance of being at Stage 1A HDGC and they only find the Stage 1A on biopsies 40% of the time. Forty percent of the time??? Well, that’s comforting. More on the biopsies later…this is after all, just the first post.
Here is where it gets fuzzy. Out of that 90% chance of being at Stage 1A, there is anywhere from an 80% to 56% likelihood of it becoming malignant and quickly enter into Stage 2…3…4…and scene. 80% is definitely worse than 56%, but really neither is excellent. The only way to prevent this type of cancer is to have the organ it attacks taken out. You can’t get stomach cancer if you don’t have a stomach.
I asked Dr. Davis, “I have relatives who are in their 60s and have not had an issue, why can’t I wait until I am their age to have the total gastrectomy (TG)?” He basically told me that is an option and my choice. However, they do not know what triggers the cells to become malignant and aggressive. They will not know that for at least another generation. I could live until I am 85, die of natural causes and never be the wiser. OR…and this is a big one…OR, it could trigger in the next year…two years and if that happens, “we can not cure it, we can not catch it”.
Well that…that’s hard to digest.