Amanda Johnson – Long Island, New York

Hi, My name is Amanda Johnson, and I live on Long Island in Sayville. I was found to have a rare CDH1 genetic mutation in November of
2017. This was right after my sister was also diagnosed with cancer found, and had her total gastrectomy. My brother came later. Our mother had died of breast cancer, and our maternal grandmother had stomach cancer, as well as many of her siblings. This hereditary mutation greatly increases one’s chance of getting hereditary diffuse gastric cancer and lobular breast cancer. Both are very aggressive cancers and are usually not found until stage 3 or 4. Currently, the most commonly recommended treatment is a total gastrectomy or removal of the entire stomach and possible bilateral mastectomy. I had both surgeries, and cancer was found in both. Removal of the whole stomach can easily lead to many other complications, which it did for me. Another option is monitoring through endoscopy biopsies and breast MRIs, but just waiting for cancer to appear (and it most likely would be that) was not something I wanted to go through. My biopsies did not show any cancer, but due to my “advanced” age and the fact that my sister had cancer, it was recommended that I go through with the total gastrectomy as soon as possible. This was a shock. One would think with 1 of 5 all the advances in oncology that, there would have to be a less archaic way to get rid of this cancer, but there wasn’t.

On December 22, 2017, I had my surgery to remove my stomach at Stony Brook Hospital and was the first person to have this specific surgery there. My surgeon was Dr. Joseph Kim from Stony Brook University Hospital here on Long Island. He was an amazing surgeon and very helpful. While he had not done gastrectomies for CDH1, he had worked closely with a doctor in the city that was quite familiar with CDH1. I also wanted to be close to home. There was practically no time to prepare for this, but I thought I could just figure it all out afterward. The trauma of losing one’s stomach is major, physically and mentally. It’s a whole body part that is important and one that other body parts rely on. Sure, it’s possible to live without a stomach, but it is not easy. Once released from the hospital, you are left with trying to figure out how to function with this new body. What can I eat? How can I eat every two hours if I’m not feeling hungry? How do I fit in drinking liquid because it can’t be done while eating? Am I taking the right supplements because now my body has difficulty absorbing many vitamins and minerals? It was a lot to wrap my head around while being in a lot of pain. I found it difficult to find a nutritionist that really knew what I needed. The closest I found was a bariatric nutritionist.

During all this time, I was supposed to make sure I kept up with all the other stuff in my life but not do too much. Thankfully I had family helping. Otherwise, I would not have been able to take care of myself alone. As I said earlier, a total gastrectomy comes with possible other complications. Since my original stomach and breast surgeries, I have had to have 2 of 5 gallbladder removed, developed several kidney stones (some that needed to be physically removed and a stent placed), and developed a hernia at the incision site from infection. I had to have more surgery to repair the hernia and have developed chronic pain from that surgery. I also developed an intussusception which is a very painful situation where the intestines fold in on themselves. In the four years since I’ve had my stomach and breasts removed, I have had 7 more surgeries and am dealing with anemia and osteopenia. Each surgery makes me weaker and in pain. They really leave one depleted, and you develop a feeling of hopelessness. I developed PTSD and now have to take special care whenever I go in for a procedure or to a hospital. I have developed anxiety and depression. I highly recommend finding a therapist specializing in trauma, PTSD, and even body image BEFORE the surgery.

I no longer enjoy eating as I did before my TG. Cooking used to be a passion, and now it’s just not fun. Food is more like medicine than
something to enjoy. I’m supposed to eat about every 2-3 hours, and there are only a handful of things I can tolerate. It’s just a chore now. Then there are the sudden reactions from eating something that doesn’t agree with me or sugar levels dropping and raising that can cause dumping syndrome. There has been so much I have had to learn to take care of myself. I have to eat mindfully, chewing everything a lot. If I eat too fast or food that isn’t chewed enough, I get nauseous and risk the food coming back up.

I know there seem to be a lot of negatives in my recovery, but I want you to know that there is no way I would have done anything differently. The one thing that kept me going was my strong desire to make sure I was 3 of 5 alive for my son, husband, the rest of the family, and my dear friends. I wanted to watch everyone’s life unfold. I also have things in my life that I still want to do, and I wasn’t going to let cancer get in the way. It is hard, but trying to stay positive and away from the “what ifs” helps tremendously. Almost 5 years post-TG, it is still hard.

Food has always been a big part of my family. Most of our favorite times were had in the kitchen making food or in the dining room sharing our reactions to the food we just cooked. We traveled a lot and picked up hundreds of new recipes. When I was growing up, I was told that I didn’t need to eat everything, but I must at least taste everything. We enjoyed every minute of the time together and experiencing all the new flavors and recipes. Now that my siblings and I have had our surgeries, things have changed a bit. I still love to cook, but it doesn’t hold the same love as it did before. I go back and forth with being able to tolerate foods, which affects my eagerness to deal with food. If I can’t eat it, why should I bother making it, right? Wrong! I can still get joy from cooking for others. I can still see their enjoyment of the flavors. Many times, I can even take a taste of it. Often I will tweak a recipe so I can eat some or at least make sure there are dishes I can have while they are eating. Family gatherings are still mainly around food, but we’ve broadened our horizons and look at what it’s like to be where we are together, enjoy each other’s conversation, and delight in family stories, both old and new. It’s more about the experience that the food with me now. I still can’t wait for Thanksgiving, though!

So it’s 2022, and I hope I am done with surgeries, but there is no guarantee. For those of you facing this decision, I highly recommend doing 4 of 5 the research and finding a doctor of excellence, and putting together a team that will support you before, during, and after the surgery. As I have said, it is possible to live without a stomach, but it is not easy. A big warrior tip is to be prepared mentally and physically. It will help tremendously. Staying positive and getting the support you need are key. A big one is to not beat up on yourself. Give yourself a boost every day but tell yourself that you can do this and you are strong. My motto is “Having no stomach gives me more guts!”