My Story...Total Gastrectomy
My wife encouraged me to write and share my story…
When I found out that I was at risk for stomach cancer I spent a lot of time looking through posts and stories online. About one and a half years ago, I had a genetic test that confirmed I was predisposed to stomach cancer. Which meant I had more than an 80% chance of getting stomach cancer? It had already killed a several family members before the doctors found the genetic link. It makes you think about how much doctors really know about this disease. My story is not much different from other members in my family. I was voicing my concern about stomach cancer for several years with my family doctors. Too many family members died from the disease. However, my family doc assured me that if I had cancer they would find it in the blood tests they had run. I insisted on a referral to a gastro doc. I had at least 3-endoscopies over the years, the final one being just months before my genetic test. After my last and final endoscopy, my gastro doc assured me that I had nothing to worry about and if I had something, he would have found it. If I had listened, I could be dead. As it turned out less than six months later, they found 29 spots of cancer in my stomach. I would encourage anyone with this disease to seek the best doctor you can find. I was lucky enough to have access to the University of Pennsylvania health system. The difference between these doctors and the ones I had been seeing is like the difference between a professional athlete and a high school athlete. This might not even be a good enough description. In my case, I believe it is the difference between life and death.
After I received the results of my genetic test, my genetic counselor encouraged me to view your website. I was deciding if I really wanted to have my entire stomach removed. I wanted to know my options, pig’s stomach, partial gastrectomy, surveillance (endoscopies) etc. My Penn docs assured me that I did not really need a stomach and that this was the best course of action it seemed drastic and even ludicrous. Then I read a post on your site from a young woman that said it was really no big deal for her. She was a grazer before the surgery and was a grazer post-surgery. That did not sound too bad. After reading her post and several others I figured this was something I could deal with, a fair trade-off to be healthy. I decided to have the surgery, which I did on July 15, 2015. My sister had the surgery six months before, my brother 3 months after and my cousin the same day as I. We are all doing fine and are pretty much back to normal living.
My recovery at first was tough. I was out of work a little over eight weeks, exactly what my surgeon said to expect. I could have started sooner; however, my job requires me to visit construction sites, climbing ladders and stairs. For the first month or two, I felt like I did not have the energy or coordination to do much climbing or physical work. I now know I could have done some things nutritionally to help with this side effect of surgery. I would encourage anyone going through this surgery to find a satisfying protein drink. Drink it during early recovery to prevent muscle loss. I guarantee it will help you recover much faster. My brother, a carpenter, was doing stuff that is more physical and sooner than I. I am convinced it was because he drank his protein shakes religiously. Frankly, I never liked these kinds of drinks. It took me weeks to find a drink that I could tolerate…which for me was a little too late.
What is life like now? Not much different. I am healthier. I lost 85 pounds. For me this was a benefit of the surgery. My bother only lost 35 pounds; of course, he was not overweight like me. I pretty much eat anything I want. That includes steak, sausage, Mexican food, chili and red meat. The only thing I stay away from is pancakes because there must be some kind of sugar additive that gets into my system to fast. This is odd because my brother and I also joke about our newfound craving for chocolates, so it must be certain types of sugars that are bad. My meal size is that of a normal person. I will eat a salad with dinner and I can have a glass of wine. I will usually skip the appetizer and desert. However, if I wait 30-minutes after a meal I can have a desert. It is amazing to me how the body can adjust to life without a stomach. My meals are normal size. I just do not drink many fluids with my meals. Usually I will only have a few of sips of water or iced tea with my meal. I also remember to chew well. I sometimes forget to chew well and will be filled up too quickly.I was a big beer drinker…likely the reason for my heavy weight. For the first six months of my recovery, I avoided all carbonated drinks including beer and diet coke. I have not had a diet soda since the surgery and less the two dozen beers. I can drink beer but it is just that I do not want to ruin a new good habit. I did not want to tell my wife about this, but two weeks ago, a friend and I rode the bicycles to the local bar. I ate two cups of chili and drank 5-pints of beer. I did not think it was possible. I also did not have any side effect or ill feeling. I also drink coffee again…lots of it…with cream not skim milk. I stayed away from the beer more from the perspective that I know I will get back to my old ways. Instead, I prefer a good cabernet or salty dog (gin, smoked salt & grapefruit juice). I am, normal when it comes to enjoying adult beverages. I have gotten used to the alcohol getting into my system much faster now. I guess I am considered a cheap date. I did stay away from alcoholic beverages for several months. The surgeon warned of ulcers. Once I felt I was ready, I eased into some wine and the salty dogs.
Knowing what I know now. I would not hesitate to tell anyone with stomach cancer to go for the total gastrectomy. If you are healthy before surgery, it is possible to be healthy after. For me, my life did not change much…I just went through a little longer recovery. It is worth it. My sister got bad advice and initially only had a partial gastrectomy. Her cancer returned and she eventually had to have a total gastrectomy only to find out the cancer had spread. It complicated her recovery and required her to go through several treatments. My brother and I had our entire stomachs removed and did not have to go through any treatments. We are both back, and are actually living a healthier lifestyle. It is as the young woman said in the post that I read before my surgery, “it is not much of a change. “ It took about 10-months to get to this point, but it was well worth it.