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High Grade Dysplasia Result - GI Insists on Surgery

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Ulcerative Colitis
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Posted 11/14/2016 10:45 PM (GMT 0)
Hi, I am new to this Forum. I was diagnosed with severe UC back in 2008. I've been on Remicade and Methotrexate for 8 years now. Feeling great with no signs of flare or pain for the past 8 years. Only reminder that I actually have UC is the fact that I need infusions every 8 weeks. Just had a colonoscopy and the pathology report said I have High Grade Dysplasia in the Cecum. My GI said virtually everyone with severe UC will get dysplasia at some point in time which will result in the need for surgery in the future. He claims the longer you have this disease, the higher the likelihood I can develop colon cancer. He said I should cease Remicade now and referred me to a colo-rectal surgeon to proceed with colon removal. Has anyone out there had a situation such as this? I feel perfect and am having difficulty coming to terms with having surgery when I feel just fine. He said High Grade Dysplasia is precursor to cancer. Anyone else out there been diagnosed with High Grade Dysplasia in the colon as a result of UC?
Posted 11/14/2016 11:31 PM (GMT 0)
sorry for your sad news.

the reason yearly scoping is recommended after 10 years of UC is because of the elevated cancer risk. certain dysplasia and certain types of polyps are effectively stage-0 cancer. Dysplasia means abnormal growth. The question is benign or pre-cancer.

You may want to consult an oncologist. Have them review your pathology report and go over the odds of cancer with you. It is very likely going to develop into cancer, the question is how long and how quickly. There are new cancer drugs all the time. It is possible that in a year or two there will be a stem-cell or immune based treatment for cancer. The risk is that it could grow and spread quickly. Right now removing the colon will contain it. If it spreads to kidney, liver, bladder ... etc, there may not be a surgical answer.

IF it was only 1 polyp described as high grade dysplasia, and that polyp was removed, you might just decide to do another scope in 6 months to see if more have grown. IF you do not move toward surgery at this time, you should monitor very closely, and get very informed.

You can talk to a colon surgeon to find out the details and options of the surgery. Good to do even if you decide to put off surgery. You can talk to an oncologist to get informed on how quickly things could develop and spread. It might also be good to have a 2nd pathologist read the pathology report.

I would ask everyone you talk to what level of surveillance they recommend based on the size of your lesion/polyp with dysplasia. Larger is worse. Here is a very recent review of risk factors for colon cancer that identified high grade dysplasia as a red flag.

/www.ncbi.nlm.nih.gov/pubmed/27484812


I am sorry for your bad news

Post Edited (DBwithUC) : 11/14/2016 4:47:15 PM (GMT-7)

Posted 11/15/2016 12:00 AM (GMT 0)
I think you should probably get a second opinion. No reason to rush based on one opinion. I have to be honest though, having surgery, for me, has worked out very well - and this is high grade dysplasia, not something to mess with. If faced with imminent cancer or surgery, I'd much rather deal with the surgery. Actually, this has been better for me than all the treatments I was on too. Being med-free is very liberating. I believe the statistic is that around 25% of people with UC end up having surgery at some point. I would imagine a portion of those are people who developed cancer.
Posted 11/15/2016 4:07 AM (GMT 0)
Have another pathology group - an outside group for a second opinion - review the biopsies.

If they agree that it's high-grade dysplasia, then it's probably in your best interests to go ahead and talk to the surgeon. You don't want that to turn into colon cancer - and if it's high-grade dysplasia, there's a high chance that it will.
Posted 11/15/2016 2:03 PM (GMT 0)
Dysplasia isn't anything to mess with, you'll likely need surgery. Your only other choices is monitor it more frequently with scopes but it's in the Cecum which means more colonoscopies.

Definitely take your time to meet with a colorectal surgeon or two (or more), read up on articles regarding the procedure - There are also some good blogs out there that really helped get a handle on what the process is like -
Posted 11/15/2016 2:24 PM (GMT 0)
I agree with all of the above. I would get a second opinion on the pathology or review it with an oncologist, then meet with a CR surgeon. That way you have all of your information to make the best decision for you.

If you are feeling good surgery will be a harder thing to accept and adjust to than someone who is symptomatic and miserable (like i was). That said from what I have learned at my ostomy support group. Having an ostomy precancer is much better than ostomy post cancer. Even if the cancer was contained and removed, your odds of a great outcome and well behaved stoma are better if you go into the surgery healthy.

I'm sorry you are faced with this decision.
Posted 11/15/2016 4:01 PM (GMT 0)
I like my J-pouch but my flares were really debilitating when I had my colon so surgery was easy for me to accept because it affected my quality of life.

I think there was someone last year who was also diagnosed with high-grade dysplasia, they were going to have to continue with c-scopes every 3 months. Not something that I'd want to do only to have to have surgery eventually.

You would most likely be medine free after the surgery(ies).
Posted 11/15/2016 4:50 PM (GMT 0)
DeeDee....You didn't mention if it was a polyp or regular tissue in the cecum. Have you had inflammation in the cecum in the past? And when was your previous c-scope?

q
Posted 11/16/2016 5:16 AM (GMT 0)
I don't understand why, if the abnormal cells are just in one area, why they can't remove just that part of the colon. Like do with the usual cancer patient. Couldn't this potentially buy a lot of time even if more problem areas develop in the future?
Posted 11/16/2016 5:23 PM (GMT 0)
I would assume it depends on what type of cancer it could develop into, whether its a polyp or tissue, etc.
Chronic inflammation in the cecum and dysplasia isn't a good combo.

q
Posted 11/16/2016 6:24 PM (GMT 0)

naturalcurl said...
I don't understand why, if the abnormal cells are just in one area, why they can't remove just that part of the colon. Like do with the usual cancer patient. Couldn't this potentially buy a lot of time even if more problem areas develop in the future?

I'm not entirely sure why they don't do a resection surgery (what you're describing, removing just the problem section and reattaching good sections together). I'd have to assume that the odds of other areas of the colon also getting dysplasia is sky high and therefore not worth that risk...
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