AKA ‘How did we get here?’
I lift my eyes to the mountains, where does my help come from? My help comes from the Lord, the Maker of heaven and earth,
Thursday, June 30, 2019 was the first time I heard the genetic mutation CDH1 and Hereditary Diffuse Gastric Cancer. It was the day our world started to change. My mother-in-law was diagnosed with pancreatic cancer in November 2018 and wanted to do genetic testing to help her children and grandchildren. I was there for her genetic counselor appointment and learned of the severity of the CDH1 genetic mutation.
This mutation in my husband’s mom meant he and his two brothers would need to be tested for the genetic mutation. June 10 brought a blood draw and waiting for results for Collin. Cue ALL the google searches for CDH1 genetic mutation and HDGC…most led us to the No Stomach For Cancer website (https://www.nostomachforcancer.org), blogs and individuals who ran marathons and completed triathlons, that was a huge comfort…people can live active lifestyles without a stomach!
One brother received his negative result while we waited and we were so thankful.
June 19 would change our lives, Collin received a call at 4:55pm to tell him he has the genetic mutation and would need to see a genetic counselor and have a total gastrectomy. We were to receive a call within a day or two referring us to a genetic counselor closer to our home. We didn’t so over the weekend we started our own research on doctors and surgeons to help us. I reached out to someone I found though an online search and she responded with helpful information and a recommendation to her surgeon (the same one we had seen others recommend). Monday brought more waiting and then I started calling MD Anderson for an appointment. They had one that Thursday, June 26! What a blessing, thank you God for getting Collin in quickly!
We went to see a genetic counselor and surgeon on June 26, the same recommendation was given to us. This genetic mutation carries an 80% risk of developing Hereditary Diffuse Gastric Cancer in males. The solution is a total gastrectomy, taking the entire stomach out; therefore negating the risk of stomach cancer. The problem is that the cancer can be present and growing without symptoms for a while, allowing it to spread and become fatal.
So, where does all this leave us? We have made the decision to move forward with a total gastrectomy in August. This decision is not made lightly but with consulting physicians, 70 stomach biopsies taken recently, prayer…lots and lots of prayer and wise counsel. Collin has decided to be proactive and take the risk out of the equation.
Surgery will be 4-5 hours, he will be in patient at the hospital for one week and be in Houston (close to the hospital) for one week and off work for about 6 weeks total.
Is this rare? Is it hard? What about life after this? Yes, it’s rare and we are grateful for a great surgeon and the knowledge to do something about it now. What a gift we have been given, the opportunity to make a decision. Yes, it’s hard and scary. There are a lot of unknowns but we know who holds us. Life will be different after this and will be full of dietary changes and learning what fuels Collin’s body best.
Collin’s other brother is negative as well, praising God for this!
#nostomachforcancer #cdh1 #hdgc #totalgastrectomy