Sessile Serrated Polyposis

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Sessile Serrated Polyposis

Postby sb99 » Sat Oct 22, 2016 3:32 pm

HI All,

This is my very first time on one of these forums after reading many for hours and hours at a time. I am 32 yo and After having cramping early in the summer of 2016 and not seen before mucus on my stools I made an appointment with a GI which led to a colonoscopy. I woke up to see him lancing one of 9 polpys he had found. Most of them were the sessile serrated type. He called a few weeks later to say they were precancerous and that I should have genetic testing done. I did that and have NO genetic disorders that they know of such as Lynch or Myuh(?..I forget if thats what its called). She suggested that I am "border line" for sessile serrated polyposis, but since there were "only" 9 that it is not for sure. My GI said to come back in 3 years. I think this is crazy!! Just this morning I saw more mucus on my stool for the first time since the colonoscopy and have been feeling crampy. I just feel so discouraged and doomed. I have read on these forums that people will grow 5 cm tumors in 6 months. What would you do if you were me? I would absolutely love any little piece of advice you have. Thank you so very much.

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Re: Sessile Serrated Polyposis

Postby jhocno197 » Sat Oct 22, 2016 9:41 pm

I think three years is way too long. I would want to be checked no longer than a year out, preferably 6 months for the first follow-up.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

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Facebook Username: KElizabeth
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Re: Sessile Serrated Polyposis

Postby KElizabeth » Sat Oct 22, 2016 10:36 pm

I agree with Jhocno.
One year is ideal, but sooner if your symptoms progress.
I am sure you will find likely symptoms listed many places.
I suggest you find a better GI doc who will take you seriously. My first GI didn't take my case seriously because he thought I was too young for colon cancer, and a year went by before my cancer was diagnosed. That's huge.
Female age 39- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current

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Re: Sessile Serrated Polyposis

Postby flyingfrog » Sun Oct 23, 2016 7:29 am

I have been in your exact shoes. You need to go back in a year, and the doc that you use needs to be good at finding and removing flat polyps. I had seven on my first scope, and a year later they removed 25 before they ran out of time. It never was clear if I only had seven the first time, or if the doctor just missed the small ones. After that, I had scopes every six months for a couple of years until I had my colon removed. It wasn't much fun, but now life is peachy! Stay on top of this. Polyposis sucks, but it is a 1,000 times better than cancer. Check out the SPS - Serrated Polyposis Syndrome of the Colon group on Facebook as well. Good luck!

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Location: East coast, USA

Re: Sessile Serrated Polyposis

Postby Pathfindergrl28 » Sun Oct 23, 2016 8:20 am

I understand your worries... I am 36/F. I had a colonoscopy in Dec. 2014 due to seeing blood/mucous in stool on & off for a couple of years (which I thought were hemorrhoids from childbirth). My GI doctor found a 12 mm tubulovillous adenoma in my sigmoid colon during the colonscopy, & hemorrhoids. The adenoma was benign fortunately, but surprised both the doctor & I that I had it. There is no family history of colon cancer that I know of. I had Lynch testing & it was negative. He said I could come back in 3 years for next colonoscopy, but I pushed him to do it earlier.

I just had my 2nd scope done this past Friday. When I woke up from the colonoscopy he said that there were no polyps, no cancer, and previous polyp site was clear. I was so relieved! I honestly thought there would be more, or regrowth at previous adenoma site. My advice is if you aren't comfortable with 3 years, go in sooner for peace of mind. My doctor said I'm on a 5 year schedule now, but can go in sooner if I want. I think I'll go in sooner, 5 years makes me nervous! :shock: You know your body, and if it prevents you from worrying, go earlier. You can never be too careful in my opinion... Best wishes...
Genetic high BP since age 22 (currently on Bystolic)
Wife, mom of two girls
Colonoscopy 12/1/14: DX with 12 mm Tubulovillous adenoma polyp (benign), & diverticulosis in colon, Lynch negative
Colonoscopy 10/21/16: Clear colonoscopy, diverticulosis

"Don't worry about anything, instead, pray about everything. Tell God what you need, and thank Him for all He has done." Philippians 4:6

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Re: Sessile Serrated Polyposis

Postby DarknessEmbraced » Sun Oct 23, 2016 9:57 am

I agree with everyone else that it would be best to go back in a year.*hugs* Good luck.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

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Re: Sessile Serrated Polyposis

Postby chrissyrice » Sun Oct 23, 2016 11:10 am

Also try and find a better GI doctor... from experience over the years of issues.

Some of them may have the best credentials but are not passionate about their work or the way they run their office with PAs or partners...

Try reaching out to your community for recommendations ... I found "The One" on social media community website.
Real life experiences from others helped.

Agree with everyone else as to another check up in a year and genetic testing.

DX 10-31-09 Surgery 12-1-09 Sigmoid Colon
Stage IIIb T3,N2,MX; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU +LV
12/2010 PET/CT Scan, Cancer Free
7/2012 CT Scan NED 2 years
10/2013 NED 3 years
8/2014 NED 4 years
Recurrence 6/2015: iliac lymph node(s)
8/2015 Surgery: 3 cm tumor removed+iliac artery graft
3/2016 CT Scan Stable
6/2016 Stable
9/2016 Stable
12/2016 Stable
3/2017 Stable
Recurrence 6/2017
12/2017 Surgery removed all cancer w/ clean margins
07-27-2018 Cancer-free for 7 months

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Re: Sessile Serrated Polyposis

Postby sb99 » Sun Oct 23, 2016 12:55 pm

Gosh you are all so helpful! I can't thank you enough and and am so fortunate to have your help!

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