I've had UC for 22 years but symtoms have been under control. Last colonoscopy showed several areas with low grade dysplasia. Also had polyp in mid ascending colon with low grade dysplasia. Doctor is recommending complete removal of colon. Currently reviewing options. If anyone has any had similar problems, I would like to here about your experiences and opinions.
Hi...it's really the news we all dread, and for you a very difficult emotional place to be right now.
While I don't have the experience personally, I have been in contact with others in your same situation.
How were your c-scopes in the past? Do you have copies of them to review the pathology results?
Is the location of your UC throughout or limited?
What is your med history? What's your flare history...constant? controlled..etc.
Having UC as well, I would opt for the surgery if there were several areas plus a polyp with dysplasia. The main reason would be because I'd constantly be worried about it, and the eventuality would be surgery anyway...or worse.
I think that those of us with UC have the benefits of more c-scopes and biopsies with the only conclusion of precancer/cancer to have complete removal of the colon rather than areas.
I'm going to wait for your answers before I comment further.
It's all a matter of perspective!
Thanks for your reply.
My patholology reports from 1 & 2 years ago showed active colitis with several small foci of low grade dysplasia. My most recent pathology report (from 3/1/13) showed the same active colitis with several areas of low grade dysplasia plus an adenomatous polyp with low grad dysplasia in my ascending colon. All of the areas were negative for high grade dysplasia and malignancy.
My colitis is thoughout my entire colon but I have not been having any issues with it lately. I've had a couple of flare ups in the last 15 years, which subsided after about a couple of weeks on low dose prednisone. I've been taking Apriso (4-.375g) and Immuran (1-25mg) daily which has controlled the colitis.
Dr. is recommending complete removal of my colon and a pelvic pouch (pull through) procedure, which would require a temporary ileostomy.
Since I havn't been having issues with my colitis, this decision is even more difficult. I'm currently just trying to get more information and determine the risks of colon cancer if I don't have the procedure.
Any information and support is greatly appreciated.
Hi...I would do serious research on dysplasia and what that means. Since you already have a history of it over the past 2 years, to me it would be an easier decision of the inevitable. better to make the decision than be forced, and you would be doing the surgery for ultimate prevention rather than already progression.
Since you do have active colitis, your meds aren't controlling the inflammation...even though you're not having obvious symptoms...it's not a good sign for the dysplasia.
You definitely need to ask questions on the colon cancer forum, hopefully others will be able to lead you further. Ultimately, the decision is yours.
I wouldn't hesitate to have my colon removed given your situation. The truth spoken, for I know of a few people who have died from colon cancer. You have the benefit of early knowledge that many don't.
How is your family history regarding colon cancer?
It's all a matter of perspective!
I'm continueing to research dysplasia and it's links to CRC. It seems there is some disagreement with when a colectomy is necessary with reguard to low grade dysplasia. Also there is inconsistency with pathologists diagnosis of dysplasia.
I am waiting on a second look at biopsies from pathologist from Cleveland Clinic. In the mean time, still gathering information.
I have no history of CRC in my family. Unfortunately, both my mom (overian) and dad (melanoma) died of cancer in their mid 60's. My brother also passed away form Multiple Myloma. Not sure that any of it relates to my condition but it does make me think cancer is much higher risk.
What are you most afraid of to consider the surgery?
To me, your risks are high, and being on Imuran can push the risks of cancer a bit in the plus rather than the negative. Do your research on that as well.
Dysplasia is the early stage...the warning stage. Since yours has been continual over the past few years with no change to improvement(meaning less sites), it's certainly a game of chance to continue to see what happens.
However, everything is...if things are taken in comparison.
As well, the sites are varied throughout the colon, if the doc took at least 5 from each section each year, I would assume that your entire colon is in a state of dysplasia.
Have you had blood marker tests done? maybe that's a route you could explore to see how that may measure up...although not all are conclusive, and that may cause more disagreement than purposeful guide.
Have you had an MRI or other test that could see if there are other sites that might be questionable?
Please let me know.
It's all a matter of perspective!
I know this is an older post but I wanted to comment, as I'm in a similar position as you.
I had a large polyp removed two years ago which came back pre cancerous but my GI wasn't overly concerned because based on the pathology at the time, it was rather unremarkable and wasn't related to my UC. He continues to monitor the area every time I have a colonoscopy for changes, taking biopsies of the area where the polyp had been removed. Things had been fine but with my last colonoscopy in June, the pathology came back showing low grade dysplasia, so my GI had me come in and we talked about it, that the recommended guidelines indicate complete removal of the colon so he wanted to prepare me for that. I was stunned with this news because I've been in remission for several years (currently taking Imuran), so I do understand how hard it is to reconcile feeling good, having the disease controlled and yet being told the whole thing has to come out anyway. It really messes with your head a bit.
My GI doc is in a bit of a disagreement with the pathologist based on the minimal dysplasia. So my GI is taking an aggressive monitoring approach, to have another colonoscopy in 6 months (scheduled for next week) and we'll see if the pathology comes back the same. If it shows more definitive results with the dysplasia, then it's surgery. If it's status quo, we do another colonoscopy in 6 months, and reassess again.
I was thinking getting a second pathology opinion from the Cleveland Clinic as well. We'll see what comes about next week.
Anyway, just wanted to reach out, see if you've gone forward with the surgery of if you're still monitoring things.
I have not had the surgery yet. I'm doing something similar to you....having colonoscopies every 6 months. I had my last colonoscopy in September and things looked about the same with colitis thoughout the colon and one area with low grade dysplasia. I'm going back to GI Dr. in a couple weeks, he is still recommending colectemy. I'm still unsure what I will do since I'm not having any problems with the colitis.
Let me know how things go and if you go to Cleveland Clinic.
You know, it makes me feel a bit better knowing someone is doing a similar approach. I mean, whatever is going to be is going to be, but I also want whatever I do to be based on rational thinking and data rather than on complete fear. And I'd like it to be on my terms which I know isn't always possible but that's always my goal.
Hi Eagle just wanted to let you know my colonoscopy went well yesterday. Barring anything funky from the pathology report, everything looks in good shape. My GI is happy with things and doesn't expect the pathology to reveal anything progressing. He did burn the entire area where the polyp had been so that new healthy tissue can grow in. Plus he tattooed around the area so he will be to see where the specific area was and how it's doing during subsequent scopes. So that continues to be the plan for, keep tight and aggressive with the surveillance. Fortunately, I'm also still in remission.
My colon lives another day!
Hope things continue to remain status quo with you!