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EVEN MORE FREAKED OUT! HELP!

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Ulcerative Colitis
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Posted 7/12/2012 2:34 AM (GMT 0)
So, I had my repeat colonoscopy 3 months after my first; doctor repeated to recheck an area of low dysplasia. He said 3 mos ago no cancer, just moderate UC with this one area that was concerning. He put me on 3 mos of high dose Asacol, with some improvement but not what he wanted to see. (Just recapping, you've all heard this part recently...)

So biopsy results are in, the same spot that had the area of low dysplasia is now listed as a higher level of dysplasia than before and he's pushing for surgical consult again.

My question is do people on this forum have similar results and do docs treat or push for surgery? GI doc says it's the only safe way which is why he recommends, says I don't have to rush, it's not cancerous yet, don't have to decide in days, but should decide in weeks.

I told him I'm definitely going for a second opinion, he's fine with that and gave me my records to bring, said he'd talk to whomever I want him to.

I was freaked out before, now I' m even more freaked out. Does this dysplasia spot end the game totally and mean surgery for sure?
Posted 7/12/2012 3:08 AM (GMT 0)
I am consulting with a surgeon, purely to get rid of the UC and meds, prednisone, but she told me of a young women she just operated on whose uc symptoms weren't,t bad, but had displasia. She was telling me because she was saying how the adjustment to the pouch would be easier for me, coming from extreme frequency, blood etc, than for her because she was doing well besides the displasia. So yes I think that is usually the norm. If it was me that would all I would need to hear, especially on top of my symptoms, to take the colon out.
Posted 7/12/2012 4:35 AM (GMT 0)
This is particularly difficult to hear because I have relatively mild symptoms, no bleeding, and have only ever been on one med for 3 months-- with this diagnosis coming from a routine baseline colonoscopy even though doc says its been there probably for years...
Posted 7/12/2012 7:35 AM (GMT 0)
happycamper330, I'm sorry to hear the dysplasia is higher level than what they originally thought. Do you think monitoring the dysplasia rather than surgery right away would be an option? Maybe this is a question you can ask. It does seem crazy that you don't have any symptoms and now they find this, but actually my Mom did not have any symptoms and passed away a year ago from stage IV colon cancer. I think you are very lucky to have found this spot now rather than later.

It seems you have two options concerning the existing dysplasia...surgery or monitor it. I wonder if they would do a resection rather than a total colectomy....keep me posted on what the next doctor says.
Posted 7/12/2012 12:26 PM (GMT 0)
I was in your place a year ago, as far as being diagnosed with low grade dysplasia. So I consulted with the heads of the IBD and Colo-rectal Surgery departments at the Cleveland Clinic and both told me there was only one option once the dysplasia got to the high grade level...SURGERY. I was told and all of the research I could find says that you are 40x more likely to develop cancer and Dr. Remzi said that over half the patients he operated on were found to have Grade 1 colon cancer even though they were only diagnosed with dysplasia. You are very lucky that your doctor has been so persistent, as he probably saved your life. My only caution would be before you make that tough decision (although it would be really easy for me when it is either life or death) is to get a second opinion in regards to the biopsies from a place like the Mayo Clinic or the Cleveland Clinic. Usually you can just send them the biopsies to get the second opinion...you do not need to physically go there.
Posted 7/12/2012 1:00 PM (GMT 0)
If your level of dysplasia is high then I wouldn't mess around with that. You have to think about your future and not so much the present right now. I know it's scary to think about surgery. I had j pouch surgery because my UC was really severe. So the only place I could go from there was up. I have been fortunate to have had a wonderful result of the surgery.

My cousin died at age 50 from colon cancer. It could have been totally avoided but he was stubborn. He suffered terribly....not a good way to go. Best of luck with everything.
Posted 7/12/2012 7:56 PM (GMT 0)
My opinion....I'd seriously do surgery. I can only imagine the consistent worry...plus...you have continuing inflammation in that area as well. Not a good combo.

What's the area that's been tested and has the dysplasia?


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