Hyperplastic/Serrated Polyposis Syndrome

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Hyperplastic/Serrated Polyposis Syndrome

by Bella117 on Sat Oct 13, 2012 12:05 AM

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Hi Guys, I'm not knew to this site, but have not been on in over 2 years since my brother passed away from colon cancer and the age of 42 and my father with another cancer at the age of 60. Since my brothers dx. his siblings of course had to start undergoing colonoscopies, me at the age of 38, when I had my first, they found 5 hyperplastic polyps, no biggy, took them out, came back benign. A year later, 10 benign and my last in July they stopped counting at 20 (i beleive it was approx.25). My last colonoscopy was at the Mayo in Rochester and they did a chromenoscopy/Endoscopy and this is what I will have moving forward. After meeting with Genetics they wanted to start treating me as though I had Lynch syndrome, so had to undergo a lot of other tests, all good. Now since they are unable to test my brothers tumor to see where the mutation was, they now want to dx me as having Hyperplastic Polyposis Syndrome and beleive that my brother had this syndrome too putting his first degree relatives at a very high risk for developing colon cancer at a younger age, which apparently use to be considered very rare. It once was beleived that all hyperplastic polyps had zero chance of becoming cancerous, until now with this syndrome. So I have been told that it does not matter how many polyps they remove at one time, they are cumulative and they start to talk about a partial or full removal after 100....as of today with 3 colonoscopies I am sitting at 50....and the patter seems to be doubleing each year. Any one have any thoughts or know anything more about this syndrome? Thoughts and prayers are with you all!!

RE: Hyperplastic/Serrated Polyposis Syndrome

by richeyt on Sat Oct 13, 2012 01:11 AM

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I am so sorry you and your family have been going through all this.  I have colonoscopies every six months and had two the first x(10/10).  Then every x I keep getting more of them too!  I hate colon polyps!  I had 1/3 of my colon removed for c.cancer " target="_blank" rel="nofollow">c.cancer and have had heart prob ever since...........Have any of u dev any heart prob?  I think any polyp has a chance to b/c.cancer " target="_blank" rel="nofollow">c.cancer b/c it's cell's multiplying out of con......I am thinking of getting tested for Lynch b/c my mat grandpa died of c.cancer " target="_blank" rel="nofollow">c.cancer and my first grade cousin had stage 4 c.cancer " target="_blank" rel="nofollow">c.cancer when I had mine 10/10.  I am now 46 and still fighting>

RE: Hyperplastic/Serrated Polyposis Syndrome

by katiemcintosh85 on Sun Feb 15, 2015 11:30 AM

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Hi Bella117,

I had my colon removed about 6 years ago due to serrated polyposis sydrome (at least that's what it seems to be), which also affects my sister, and to a lesser extent both of my brothers.

I've started a group on facebook to try and find others who have this syndrome, but there's not many of us so far! If you're interested it's called: "SPS - Serrated Polyposis Syndrome (aka Hyperplastic Polyposis) of the Colon"

Hope you're doing well :)

Katie

RE: Hyperplastic/Serrated Polyposis Syndrome

by linnaea on Mon Feb 16, 2015 06:26 AM

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 I cannot find your group on FB. I was diagnosed in September and would love to hear from other people who are dealing with the same condition.

Thank you!

RE: Hyperplastic/Serrated Polyposis Syndrome

by katiemcintosh85 on Mon Feb 16, 2015 12:04 PM

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Does this link work?

https://www.facebook.com/groups/282833565207010/

If not, you could try searching for my FB profile (Katie McIntosh, Queensland Tech) and send me a private message :)

RE: Hyperplastic/Serrated Polyposis Syndrome

by Bella117 on Mon Mar 16, 2015 03:54 PM

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Thanks Katie...I just sent a request to join the FB page.

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