Hello everyone.
My name is Sotia, 32 years old and I am from Cyprus, which is an island in the Mediterranean Sea (Europe).
My grandfather (from my mom) died at age 40 from colon cancer in 1980 and after doctors here saw more members of his family died of the same reason, a gastroenterologist suggested that all relatives should check their colon and that this must be hereditable (this was in 1990 approximately). When all family had colonoscopy, it was found that more than 50% had the mutation (FAP), including my mother. All the family members with the FAP at that point had removed most of their colon (left about 15cm) and had surveillance each year through colonoscopy. My mom by the age of 40, in the scheduled colonoscopy found that one of the polyps got malignant and therefore should do the pouch surgery, which at that point no surgeon was doing it in our island, so had to go in London with my father. She stayed in a private hospital for about 6 weeks, thank God had no metastasis, and had the ileostomy bag for 2 or 3 months. Then she got back to UK to reverse back the bag. I have to say the truth, there were many complications and change of her lifestyle after that surgery (pouchitis once in a while and quality of life reduced). Despite that, polyps in the duodenum started to rise, which we thought were under control with her gastrenterologist, until September 2020, which after unbearable stomachache, we discovered that these duodenum polyps metastasised in her liver and died next month. I have two younger sisters, one of them has the FAP. Until our mothers passed, we thought that yes we may suffer from the first surgery that we both did and might do another one (pouch) to remove all colon, but with the colonoscopies and the gastroscopies we will be ok. After this tragic incident, we do not know if we are going to die in our 50s even though we are responsible enough to do all the tests that doctors recommend. Is there any other clinical trial to prevent the second surgery (pouch or ileostomosis), so we can enjoy life and not to be worried every time we go for a colonoscopy?
Thanks for reading and thanks for your time.