Serrated Polyposis

[flyingfrog]

Hi gang! I am new to the forum (although not new to CRC unfortunately). My mom died of colon cancer long ago, but her last gift to me was a warning to get screened early. After much pressure from my loving wife, I have been diagnosed with serrated polyposis after having ~40 polyps removed over the last couple of years (I am in my early 30s).

I searched the forum, and there is very little discussion on serrated polyposis, so I am going to occasionally add to this topic as a guide to others who head down this path. Please add your thoughts and experiences, especially if you have serrated polyposis.

My medical future is relatively unknown at this point. The doctors were able to completely clear all polyps a few weeks ago, so I will now have surveillance colonoscopies every six months to see how quickly they return and how easily they can be removed. If the polyps aren't managable, I will be headed in for a colectomy to remove as much of the colon as possible. I am hopeful about the possibility of managing this through colonoscopies in the long-term, but also rather anxious about the risk involved in keeping an organ in my body that may try to kill me at some point. I think that surgery is likely in my future at some point, but it would be nice if we could get the kids out of diapers and get my wife back to work beforehand. We will just have to wait to see what the future holds, I suppose.

I also want you to know that each and everyone of you are in my thoughts and prayers. I have read some of your posts, and the strength and wisdom on this board is incredible. Looking forward to staying in touch with you! That is all for now!
Jason

[cathy123]

Welcome to the club. Very sorry to hear that your mother passed from this disease, but glad you followed her advice and got screened and caught the polyps before they could do much damage. Hopefully you can manage (at least for awhile) with frequent colonoscopies. Best wishes and thanks for the nice note.

[NZJay]

The surgical team diagnosed me with serrated polyposis syndrome (sps). It's a fairly unknown disorder which they're researching heavily in my country to try and identify the genetic links and predictors. I'm part of their research. Like you, I had dozens of polyps.

[kkjenkins]

hello, I was diagnosed with precancerous serrated sessile polyp Feb., 2014. After the 3rd colonscopy my Dr., finally burned the area with argon plasma coagulation. She wants to wait a year before my next colonscopy. I told her that if we still have precancerous cells then i want reconstruction. It seems these types of polyps are difficult to remove once they are precancerous. I also had several beign polyps - the same type but much smaller which were also removed. Stay on top of it - that is my suggestion! I have changed my health and started to exercise to keep my mind off the 'what if's'. Good luck

[katiemcintosh85]

Hi everyone,
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"
https://www.facebook.com/groups/282833565207010/

Hope you're doing well
Katie

[flyingfrog]

Hi Katie! Thanks for the note. I am very interested in joining ( and actually started to), but realized that others could see that I joined the Facebook group. Unfortunately, I'm can't do that at the moment for work and insurance reasons. I think it is a great idea tough, and I can't wait to join as soon as I can. Thanks again!
Jason

[flyingfrog]

Just a quick update...I'm leaving this thread as a bread crumb trail for those with serrated polyposis since there isn't much info out here yet.

I had my fourth colonoscopy today and they removed 22 more polyps. The doc said that she was ultra aggressive and biopsied anything that remotely could be a serrated polyp. Now waiting on the path report. If they do all turn out to be actual polyps, she is going to refer me to a surgeon at least for an initial consult. After that, we can decide to continue monitoring or go forward with the colectomy. I was also advised to start reading up on subtotal colectomies, j pouches, and illeostomies so that I am ready for that discussion when the time comes.

[Steph20021]

My geneticist called me to say The University of Melbourne is once again seeking participants for their research into SPS. It hadn't been recruiting for a few years. She said I was eligible/qualified and so she mailed me the survey to complete. They asked a lot of questions about medications pre-diagnosis and some about various beverage consumption and family history of course. One odd question was what was your weight when you were 20? At diagnosis? And then now. I thought it was odd that they picked age 20 but I guess they need everyone answering the same quantitative question in order to graph and plot and trend etc.
Anyway, let's continue to hope they find the relevant genes/mutations.

[Bob Bones]

serrated sessile polyp at a young age is a classic sign of a condition called Lynch Syndrome. If you have a family history of young onset bowel cancer and womb cancer then you need to explore this. You can find out more at www.lynch-syndrome-uk.org

[Steph20021]

serrated sessile polyp at a young age is a classic sign of a condition called Lynch Syndrome. If you have a family history of young onset bowel cancer and womb cancer then you need to explore this. You can find out more at http://www.lynch-syndrome-uk.org

I tested negative for both lynch and fap. But there's lots of cc on moms side and mom had uterine and dad had colon so I was always doomed no doubt. But they don't know much about SPS.