I was diagnosed with having a genetic mutation in the CDH1 gene when I was about 21 years old. I wasn’t even out of college yet. My husband and I were engaged and was scared out of my mind. Considering my sisters and I watched my momma wither away and die from cancer at the young age of 15, I just wanted to get them tested as soon as possible.
The diagnosis meant that I was at a higher risk of gastric cancer than the average American. I’ve always known that cancer “ran in the family” literally since before I can remember. My older sister did not have the genetic mutation but my younger sister and I did. This meant that the best chance of survival was to have our entire stomach removed. This particular mutation causes a type of cancer that is virtually impossible to detect in earlier stages. Majority of cancer caught in the earlier stages (that have a higher chance of survival) form lumps or masses. Well an e-cadherin mutation does not. Instead it forms a layer of cancerous cells in the inner or middle layers of the stomach. By the time you catch it…It’s usually in stage 4.
Most of the time directly after my diagnoses I put it to the back of my mind in order to graduate, get married and start my family. But once we got to baby number 3 and we were considering being finished building our family. The diagnosis came lurking back my over my head. I was nervous all over again as it was time to face reality in having my surgery so I can live my life out with my babies… cancer free.
Another wonderful side effect of Total Gastrectomy is Hypoglycemia which is low blood sugar (the opposite of “high blood sugar” or diabetes). After my surgery my doctor quickly mentioned “drops in blood sugar” that I would need to watch out for. Honestly, I didn’t think much of it only that I needed to control my sugar intake (which is what you automatically think when someone mentions blood sugar) I wasn’t listening. Instead of controlling my blood sugar I need to make sure that I always have sugar around that I can quickly get to in case my sugar starts to drop.
I remember my first episode, clear as day. It was about 6 weeks post surgery and I was still figuring my new way of life out. I was just getting to the point where I could stand up straight and my stomach muscles were able to support my body again. Long story short I was out of town attending a funeral. Early one morning I woke before everyone else and ate the last slice of cheesecake. It was really good too. I went to the funeral around 11a. Ate afterwards and everything. All of sudden when we had got back to the house I remember sitting in the kitchen getting light headed, jittery and shaky. I didn’t know what was going on. My mind raced trying to figure it out then landed on “blood sugar dropping”. Luckily someone had a peppermint which are lifesavers for me to this day.
Since my surgery I’ve learned not to eat anything sweet first thing in the morning. I will always have an episode sometime during the day if do. My episodes have progressively gotten somewhat worse since my very first one. I went from being just a little shaky, to being aggressive, to losing pieces of time during the episode.
Most recently the biggest event I’ve had happened while I was driving to see my in-laws with three of my four in the car with me. The onset of the episode was completely different than what I had come accustom to. Usually I can see a neon yellow ring forming in my eye sight that I literally can’t see around. This time my head felt a little head and when I blinked while driving my head “swum”. I just thought I was tired because I didn’t get much sleep the night before. I drove about another 12 minutes on into town. Just as I was turning on the main road they live off of I suddenly had no idea where I was or exactly what was going on. I remember that I kept telling myself that I was driving. My thoughts were lost but I knew we might be in trouble. I remember going through a stop light and not knowing where I was, but that if I was moving then I needed to make sure the light was green. I looked at that stop light and the road in front of me about ten times back and forth and pulled over as soon as I got through it. My oldest daughter and my oldest son were in the back talking loudly and non stop to me. I remember snapping at them as they asked where we were. Luckily I had turned into a parking lot right beside a McDonalds. I went to the drive through and got some ice cream in order to get sugar in my system. Now I keep peppermint in various places (the car, the diaper bag, my bag, upstairs, downstairs, I even have a stash at my in-laws house) so I can act quickly during an episode .
So one of the many side effects of Total Gastrectomy (which is the total removal of a stomach and lymph nodes) is dumping syndrome. Dumping syndrome is when you eat too much of something, anything, and the food moves into (or dumps into) your small intestine too fast (since there is no longer a digestive stage from not having a stomach). Now every person’s dumping syndrome is different. When my younger sister (who also has the CDH-1 genetic mutation and had a total gastrectomy exactly a year before me) has dumping syndrome she has an increased heart rate and breaks out in a cold sweat. My dumping syndrome is lethargy and loose stool (TMI…yes…yes it is lol). And when I say lethargy I mean I’m down for 30 minutes minimum. There is absolutely no way around the tiredness. No matter what I do. I literally have a hard time keeping my eyes open.
Now I know what you’re thinking. Why not just make sure you don’t eat too much. Well that’s the thing. Because I don’t have a stomach I no longer have a gauge for being full. By the time I feel full I’ve already overeaten. After surgery I was told to eat small meals frequently. Which I do. I am ALWAYS eating. That’s because the meals I eat are too small because I’m afraid of overeating I usually don’t eat enough. After surgery my doctor recommended eating first and drinking after I’m finished eating in order to save space. It’s frustrating but I’ll take it over the latter.
A quick background on total gastrectomy. I had my entire stomach removed. The doctor connected my esophagus directly to my small intestine. In order to not lose as much weight and to be able to eat a little more; the doctor made a small pouch out of my small intestine. So it’s literally like filling up a tube with food and drink and it going directly into your small intestine.
So my story…shortened. I’m 33 years old. When I was 21ish…I found out why so many people on my Momma’s side of the family have died from cancer. Turns out, we have a familial curse. It’s a genetic mutation called e-Cadherin. It’s the CDH-1 gene that is mutated and causes a higher risk of gastric cancer as well as lobular breast cancer. My two sisters and I have lost our Mother, Grandfather, Aunt, two first cousins as well as a few other cousins (all maternal) to stomach or some other gastric cancer.
I worked with a Genetic Counselor at Wake Forest Baptist Medical’s Cancer Center in Winston-Salem NC and had blood work done to see if I had the mutation…which I did. So in order to prevent stomach cancer medical experts recommended having my stomach removed. This is because this particular cancer is virtually undetectable due to it forms a layer of cancerous cells as opposed to a mass.
In other words…NO STOMACH NO CANCER.
Follow me and we’ll talk about what the surgery was like as well as what life after total gastrectomy is like and what pregnancy with no stomach was like (yes it is possible)