Family with FAP needs to know.....

I am 46 yrs old am married for 18yrs and have 3 sons.  I was diagnosed with FAP colorectal cancer in May 07 and genetically tested positive for the APC gene mutation as well as all three of my sons.  I had a restorative proctocolectomy, rectal mucosectomy, ileal pouch, anal anastomosis, temporary ileostomy and a Whipple proceedure in Sept 07. I am currently undergoing chemotherapy consisting of 5-FU and leucovorin.  My question is .............does anyone know of any experts in this field that can help my 3 sons avoid experiencing what I am experiencing?  FAP is rare but when found, it usually is found in more than one family member.  

[Fernando Roque, MD]

Hi. Since all three of your sons tested positive for the APC gene, they have to undergo yearly colonoscopies starting from 10-15 years old to look for adenomatous polyps.   If polyps are found and these are few in number, excision of the polyps (polypectomy) can be done, but if the polyps are too numerous, part of the colon may need to be excised.  Your sons can also start taking in Celecoxib for at least three years.  This drug has been tested to prevent the growth of adenomatous polyps.

[PDR6465]

Thank you for your input.  The pediatric GI doctor for my sons is consulting with a doctor at the University of Michigan because the NSAIDS are used primarily on adults. This being a rare condition, I am looking for a doctor that has had more than a few patients with this disorder. My son's ages are 13, 14 & 17 and they all have polyps which are too small to be removed without possibly puncturing the mucosal wall and they are too young to undergo any removal of any part of their colon.  If you know of any Gastro doctor with experience with FAP youths please let me know.

[Fernando Roque, MD]

Hi.  Unfortunately, I don't live in the United States, so I don't know the gastroenterologists in your area.  You can try searching the internet.  I'm sure they have a list somewhere.

[wenny15]

I am so sorry to read of your situation. I am a 25 year old mother of 2 young daughters. when I was 22 I was diagnosed with FAP and had already developed colon cancer had the temporary ostomy and all that. After having the genetic testing only my youngest daughter tested positive for the mutation. She was only 1 at the time so we found out really early. I think it's harder to deal with your kids having it that going through it yourself because you know how painful all the treatments are and I would rather go through it all over again than have to watch her go through it eventually. Just wanted to send you some moral support and let you know that although this is a rare mutation you are not alone. God blees you and your family. You will be in my prayers.

[TaylsN]

I realize you posted your question a long time ago, but in case you're still looking for doctors that have expertise in FAP, I figured I would respond. My boyfriend and other members of his family have FAP and they've gone to the Cleveland Clinic in Ohio, even though we live in New Jersey, because they are supposedly the pioneers in the field. Here's a link to them http://my.clevelandclinic.org/disorders/inherited_colon_cancer/dd_fap.aspx
I hope you're doing well.