Gardner's syndrome with Serrated Adenomas

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CystGallery
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Gardner's syndrome with Serrated Adenomas

Postby CystGallery » Thu Mar 28, 2019 12:09 pm

Hello All!

As expected I am having trouble trying to find reliant info to bring me comfort on my pathology reports. Longish story to set up the whole picture... a foreword though... average kid, flu every few years, seasonal allergies, no surgeries, not even sore throats or any of the normal kid stuff. Overall super healthy. Normal slender height/weight proportions all my life. Caucasian Female.

In 2000 (17 years old- 5'7" 115lbs) I was diagnosed with Gardner's syndrome and had a 7mm Gardner cyst removed from my left cheek. It had left to fester at the care of my primary doctor who shrugged it off as a zit with treatment of antibiotics for a year. After pain and blurred vision started to increase, another doctor had instructed me to have it removed via plastic surgery asap. That surgeon did not do a pathology on it and hacked my face up. Less than a month later it grew back, it was aggressive and I found a great dermatologist who, despite not seeing a cyst like mine and not knowing the pathology, we began treatment with weekly steroid injections and Accutane. Over the course of the year, it topped out at about 11mm and it was removed. Pathology stated benign with precancerous cells and earmarked it as a Gardener's cyst. The dr. said the blurred vision was the root system from the cyst growing up and behind my eye socket. I continued the steroid injections and Accutane for another year and thankfully it did not grow back and vision restored. I had several other small cysts develop and thus Gardner's syndrome.

Fast forward and dealings with IBS... blood in stool, severe diarrhea. My primary doctor just said the blood in stool was just hemorrhoids from the IBS. I moved states and did not have insurance or see a doctor for years.

In 2009 (26 years old- 5'7" 135lbs ) I started having severe acid reflux, I was going through a lot personally and my stress level was sky high. I ended up at the gastro for an upper endoscopy and they decided to go ahead and do a lower... They removed several precancerous spots from my esophagus and removed three polyps from my large intestine/colon. I have no idea the pathology for those... I tried to get it several times but the doctor said that the polyps were just removed since they were there, but not tested. I couldn't understand why. I went through other medical stuff at the same time so this condition took a back burner. I since found the company that maintains their records and requested them for my new doctor just in case there is something helpful.

2010, I developed a mass in my groin. My gyno said it was an ingrown hair... we waited it out for a month and it didn't improve. They gave me an antibiotic and waited another week. It grew... another antibiotic and it grew some more. The pain was almost unbearable, I worked 10 hours a day, on my feet walking. When it got to be the size of a golf ball I demanded treatment. I was sent to a surgeon who figured it was actually a hernia from work. He went it to repair it and found it was a lymph node, he removed it (golf ball) and two others the size of grapes. Pathology was inconclusive. The node was primary a large mass of white blood cells but did not show leukemia. Weird... I know.

Fast forward late 2017 (34 years old- 5'7" 170lbs) I started having severe acid reflux again... like heart attack feeling stuff. I put off treatment until I had such a bad flair of Barrett's esophagus that I almost herniated my stomach. I got a referral into a gastro and he immediately ordered an upper and lower endoscopy.

February 2018- (36 years old- 5'7" 173lbs) The upper showed significant damage to my esophagus and the lower he removed three polyps with the largest being a flat 14mm in the right ascending colon. Pathology came back as a Serrated Adenoma. The Dr. was shocked. He said in his long career he never saw a sessile serrated adenoma in anyone under the age of 50 and only one adenoma in a 37 yr. old hispanic man.

On Monday, I repeated the lower endoscopy. Again he found a flat 12mm polyp in the right ascending colon. Pathology came back yesterday as sessile serrated adenoma again. Dr. said that it is not if but when this is full blown colon cancer. He doesn't know what to do. I happened to have a regular dr. appointment yesterday as well and she is not sure how to proceed either. She said both pathology report don't fair well for me and she is researching genetic counseling... there isn't any near here.

I eat lots of fresh veggies, a good amount of fresh fruit, lots of chicken, some fish, very little beef and no pork. I have been on the intermittent fasting 8/16 for a year. I grew up on a holistic organic farm so I have had almost no know exposure to the consumption of pesticides or hormones... I don't eat out but several times a year... I cook everything from scratch, I don't use boxed foods or ingredients (never have) other than the occasional pasta. I purchase organic and free range, hormone free since that was how I was brought up. I also cut my gluten intake down to twice per week. I don't consume any added sugar, I cut out cakes, cookies, ice cream, etc. and don't really crave for sugar anymore... the only time I eat it is for a special birthday or something like that... less than 1 once per month.

I get a fair amount of activity. I walk about a mile a day at work. I quit my job 6 months ago to cut down on my stress. I'm not sure where to go from here. I feel like this is a never-ending story of what-ifs and coulda-shouldas. I'm at a loss for what else I can do to take care of myself and also how to hold my doctors accountable for follow-through. I feel like I am limited to living my life, test to test when I want to live in the moment.

What does this pathology really mean for someone my age? The dr. just wants to wait again until this time next year. Do I need a second opinion?

Many thanks!
The Newbie- CystGallery

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O Stoma Mia
Posts: 1600
Joined: Sat Jun 22, 2013 6:29 am

Re: Gardner's syndrome with Serrated Adenomas

Postby O Stoma Mia » Thu Mar 28, 2019 3:18 pm

CystGallery wrote:...
On Monday, I repeated the lower endoscopy. Again he found a flat 12mm polyp in the right ascending colon. Pathology came back yesterday as sessile serrated adenoma again. Dr. said that it is not if but when this is full blown colon cancer. He doesn't know what to do. I happened to have a regular dr. appointment yesterday as well and she is not sure how to proceed either. She said both pathology report don't fair well for me and she is researching genetic counseling... there isn't any near here.


Genetic testing for your condition is offered by the following organization. The requirements are to have your specimens and request forms submitted by a doctor. You should also undergo "genetic counseling".
https://www.cityofhope.org/clinical-molecular-diagnostic-laboratory/list-of-cmdl-tests/apc-adenomatous-polyposis-coli-gene-mutation-analysis

Genetic counseling is available here:
http://hereditarycarecenter.com/

More genetic info on FAP and Gardner's Syndrome is here;
https://ghr.nlm.nih.gov/condition/familial-adenomatous-polyposis

DarknessEmbraced
Posts: 3301
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Gardner's syndrome with Serrated Adenomas

Postby DarknessEmbraced » Sun Mar 31, 2019 8:59 am

I'm so sorry you're going through this and I hope you get more information soon!*hugs*
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

Pyro
Posts: 259
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Gardner's syndrome with Serrated Adenomas

Postby Pyro » Mon Apr 01, 2019 8:09 am

Get a second opinion, if they say the same thing, relax.
Aug 2015- Diag Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail, CEA @36
Jun 2019 - FOLFURI until I can’t stand it


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