Question about low grade dysplasia

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laura11103
Posts: 3
Joined: Wed Jun 14, 2017 2:22 pm

Question about low grade dysplasia

Postby laura11103 » Wed Jun 14, 2017 2:29 pm

Hi everyone! I was diagnosed with ulcerative colitis 2 years ago, had my initial colonoscopy then, only UC was found. Been seeing my gastro doc since then, been on Lialda and canasa ever since and literally no symptoms. It's like I'm totally fine other than having to take meds.

So she did a routine colonoscopy 2 months ago and said my colon looked great, disease totally under control BUT they found a spot of low grade dysplasia (which shocked her). She didn't know where it was so we did another colonoscopy with dye to try and find it. She did a bunch of biopsies, she said she did the equivalent of 2 colonoscopys wanting to make sure she finds it (the dye didn't help anything). So the results came back totally clean, no dysplasia at all (yay). She sent both pathology reports to a 2nd pathologist (NYU) and they indeed found the dysplasia in the first report (so no mistake there) and also found it clean in the second. So confirmed the findings. Now I go see her next week to talk.

Should I be happy? what should I do? do I go for colonoscopy's constantly until they find the dysplasia again?

So confused

Thank you for any advice!!!
Laura

Lee
Posts: 4821
Joined: Sun Apr 16, 2006 4:09 pm

Re: Question about low grade dysplasia

Postby Lee » Fri Jun 16, 2017 11:37 pm

Hi Lauria,

I'm bumping this back to the top. Sorry I don't have any answers for you. What you are describing is beyond me. Hoping someone more knowledgeable comes along.

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

ozziej
Posts: 203
Joined: Thu May 21, 2015 8:35 pm

Re: Question about low grade dysplasia

Postby ozziej » Sun Jun 18, 2017 6:55 am

Hi Laura, when I had a colonoscopy in June 2014 a sessile polyp was found that was biopsied but not removed due to its shape and lack of skill of the GI. Pathology came back benign, but I ended up seeing another GI to have the polyp removed by EMR. On removal pathology came back malignant. I was told that the reason for this was that there can be both benign and malignant sections of the one growth. I'm wondering if this might explain the seemingly contradictory findings in your case, assuming they biopsied the same spot. Hopefully your doctor can shed more light on this and ease your anxiety given your findings were in the reverse order to mine. Best wishes.
F 56 dx 11/14 Stage 1 RC (post EMR)
No neo-adjuvant or adjuvant chemo/RD
3/15 ULAR (open) temp loop ileo
5/15 ileo reversal
NED and hoping to stay that way!! : )

laura11103
Posts: 3
Joined: Wed Jun 14, 2017 2:22 pm

Re: Question about low grade dysplasia

Postby laura11103 » Tue Jun 20, 2017 12:11 pm

Thanks. So since the 2nd pathology confirmed LG dysplasia from first colonoscopy but not the second... we know the dysplasia is/was there so we need to find it. So I'm having another colonooscopy July 14th (3rd one now) and she'll use a white light and again try and find it and take tons of biopsy's. So for now it's going to be very aggressive surveillance. You'd think a clean pathology would be good news but not in my case.

Only good thing is I've reached out of pocket max with insurance so all of this is covered for the rest of the year. Yay me.


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