This is my story. I was diagnosed at the age of 22. My only symptom at the time being some blood in my stool. There are no other family members who have FAP, I am the first link in the chain, so you can imagine I was really terrified when I got the news, fearing that I was going to die. Was given the news on 1st of April 1993 and had my surgery that May. 10 days post-op, I was still in a lot of pain and it transpired that I had a twist in my small intestine. I was rushed back to theatre and had emergency surgery to correct this issue. I was then transferred to the High Dependency Unit for 5 days. In total I was in hospital for a month and went 21 days between meals, I was under 7 stone when I was discharged from hospital. I returned to hospital in August 1993 to have my J pouch connected. And apart from the lifestyle changes I have had to make, diet and not getting drunk on alcohol I have been trouble free on the most part.
Jump to 18th November 2011 when my second child was born Evan. The midwife noticed a swelling in his abdomen and ask for a doctor to look at, well 12 hours later we were given the terrifying news that he had hepatoblastoma, stage 2 cancer of the liver. This makes him the youngest person in Scotland to be diagnosed with a cancer and the youngest in the UK to be diagnosed with a liver cancer.
We have spoken to a geneticist, who has stated she is 99% certain the Evan has FAP.
Evan had his 1st chemotherapy at 12 days old, had 4 central lines throughout his treatment, had blood poisoning on 2 occasions and his surgery was cancelled twice. Eventually had half his liver and gall bladder removed on 4th April 2012. In total he had 3 different chemotherapy drugs and 6 treatments, 5 before his surgery. On the 1st June 2012 we got the news that he is in remission. He will have a lifetime of checkups for his cancer and if right also to look forward to FAP.