The FAP Gene Support Group
(Familial Adenomatous Polyposis)
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Following Article by Mick Mason of The Leicestershire ia
(Ileostomy Journal March 2003)
The operation was necessary because of multiple polyps and I was a bit astounded to hear the consultant say at my final colonoscopy "I've never seen anything like it in my life". I think it was then that my wife Ann and myself realised the full extent and were not totally surprised to hear after the operation that they had found a tumour and I had cancer of the colon. Whilst still in hospital the words Familial Adenomatous Polyposis were mentioned for the first time. Luckily, although I hate abbreviations, it is commonly called F.A.P. (sounds like it's straight from Thunderbirds).
In November 1999 we had a home visit from Valerie of the Genetic Clinic. I had seen a television programme about a couple who had to decide whether to have a genetic test or not and was instantly reminded of it. Going through a family history was quite a test of memory but only concerned those on my father's side of the family. We remembered a lot but afterwards had a chat with my brother and sister to complete the tree. It soon became apparent that if the test was positive it could affect around 50 relatives, right down to grandchildren of second cousins.
The next step was a chat with Professor Trembath and the mention of an eye test. This wasn't to look for anything dangerous but for freckles at the back of the eye, another guide to a final decision. Things were then quiet until January 2002 when I had the eye test but no freckles were found. I thought this was a good sign and although not the final answer was starting to think all was OK. It was a surprise then when within a week I was asked to see our Professor and was told I did have the faulty gene. The strange point was it usually starts to cause problems in the early teens. Another bit to our 'strange' family. (Since this was written a gentleman of 62 in Yorkshire was diagnosed with FAP)
So I have ended up with my ileostomy, which so far for a three year old has behaved quite well and been on a journey that has been fascinating yet worrying. Obviously at times it has been eased by the knowledge that a positive result would not affect my own health and there are far more serious genetic faults, which others have to cope with. Also when my wife Ann is not around to give a cuddle there is always my 'Therapy Dog' called Friday who is my daughters seven-year-old Newfoundland.
At the time of writing the article I just assumed that having my colon removed was the end of all my problems. Since then I have realised that FAP can be so unpredictable even within the same family. I suppose I was a little naïve in some ways and never thought of asking any questions.
GeneWatch UK had referred to it as unpleasant, in some cases perhaps yes but everyone probibilly has their own description which again shows how difficult it can be to try and understand.Go to top of page