I'll get right to it. I received the call from the NIH with my pathology results following my stomach mapping procedure earlier this month. Out of the ninety two biopsies taken, one was positive for signet ring cells. These are the cancer cells that make up hereditary diffuse gastric cancer and are very hard to find. My doctor said, "we found the needle in the haystack" which is not always the case with biopsies performed during an endoscopy. Simply put, I have cancer cells in at least one spot in the lining of my stomach. It does not appear that the cancer has spread outside of the stomach lining and it seems we found it really early. I am grateful for that. A total gastrectomy would be considered curative.
Since finding out about my CDH1 gene mutation in April, 2018, I have known in the back of my mind that a prophylactic total gastrectomy was on the table. These results take away the guess work. I will be having a total gastrectomy, it is no longer considered prophylactic, and it should be done sooner rather than latter. This may sound callous, and I am aware that breast cancer has changed me, but I felt relieved by these results. I got off the phone and immediately looked and Andy and told him about the relief I felt. Don't get me wrong, this is scary, I really don't want to have my stomach removed, and my foodie self will mourn this loss for the rest of my life, but I am relieved that the decision is no longer up to me!
I have signed a release of information for all of my medical records to be released to the NIH. After talking with my doctor there and my oncologist here, I am seeking a second opinion about my breast cancer treatment thus far and regarding recommended treatments moving forward. Because of the rarity of my type of breast cancer, I just want to make sure I am doing everything possible to keep it at bay. The current plan is for me to get that second opinion, continue with my current treatment (2-4 more cycles of Xeloda), followed by radiation (potentially), and then take a couple of months to let my body recover slightly from all it has been through the past ten months. I will then schedule the gastrectomy. I also have a lot of food and wine to enjoy before embarking on this stomachless journey. So, I guess before 2019 is over, I will become part of the seahorse club. This is what fellow CDH1 individuals refer to when talking about those who have had their stomachs removed. Seahorses do not have stomachs, and they are just fine. Happy new year all!