Got diagnosed with UC five years ago, the first three were the roughest but eventually got on Humira and went from moderate to severe to mild. Just for giggles, I had a colonoscopy on May 8th and one of the ten biopsies taken showed "at least high grade dysplasia." Now, I also have Primary Sclerosing Cholangitis as well, and apparently when UC and PSC are both present, the rate of Colorectal Cancer is higher. I had to return for a second colonscopy where several polyps were removed (including the bad one) and deeper and more numerous biopsies were taken. I sent my first path report to a friend who works for a GI doc and his response was to "take the whole thing out." I was shocked because I was thinking at most I would have a resection, and in my mind, I was perfectly fine with parting with a few inches of colon. When I went back for the second colonoscopy, the doc was giving me the "im so sorry look" when she said that I might lose the whole colon. I was confused because the polyp in question is approx 1cm. From what Ive read, the likelihood of cancer being elsewhere in my bowel is relatively high (due to the darn PSC), 40-50%. My question is, If I already have "at least high grade dysplasia" how long can I hold off on a colectomy? I know that the pending path results from the second colonscopy are key in this situation, but Im going crazy trying to pin down a potential timeline (given that CRC is slow growing). I know that I will have to have a CT scan to check for potential mets (recently had RUQ sono for the PSC which looked totally fine) so Im optimistic that all I have is early, precancerous cells growing. If thats the case, how long before total colectomy is inevitable?
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I only have one thing to say and it relates to why I had mine removed.
I didn't have it.
But the likelihood of getting it was high.
I have had uc... IBS all my life... I am.. Will be 59.
I made the decision to have it removed after alot of thinking about it.
Years actually. Of suffering and all else that comes with it.
Now having it removed is no picnic.
Year and a half later and it's still no picnic. But I don't have to worry about colon cancer.
At the same time I had mine removed a coworker had part of his removed because of cancer.
Now that he has had it reconnected he is having more trouble than I getting it under control.
So... What is worse? I don't know. I see him suffering still and thought he would be on track before I. But I think I am further ahead than him. In the year we both have been back to work he has missed a couple weeks of it because of problems. Me.... I have not missed a day or gone home early because of my pouch.
I don't know what to tell you because that is up to you and a professional to come up with a time to do what you have to do. Ultimately it's a tough decision.
But YOU have to make it.
More intelligent replies to follow... Lol... I'm sure.
I wish you the best in a bad situation.
Of course, a lot depends on what your final path reports show, but I would be thinking in terms of 3-6 months, not a year or more. Unfortunately, when you had active inflammation, it would not be a good time to check for dysplasia, since it is difficult to tell the dysplasia of inflammation from that of precancer. Plus, with your additional PSC diagnosis, your cancer risk goes up, as you know. While colon cancer may be slow growing, it may be there undetected, as they cannot biopsy the whole thing without removing it.
Soon, you'll get more specific recommendations. You can get another opinion if that might help.
I'm not sure "how much time before surgery" is the best question to ask. The only way to find out you waited too long is if metastases develop. It's not a race to the OR, but if I were in your position I'd be making arrangements for a total colectomy at a "convenient" time in the next month or two, unless a *more* aggressive treatment turns out to be warranted first. The fact that they're already looking for metastases signals how serious they think it is.
Colon cancer is slower than pancreatic cancer, but it's not "watchful waiting" slow. Once metastases develop a colectomy may be the least miserable part of the treatment.
During 2012/2013 when I had colonoscopys I had polyps some which they couldnt fully remove then in May 2013 the biopsys came bk showing Low grade dysplasia,to me the decision was easy I didn't want to wait for it to develop further so on sept 9th 3 days after my 54th birthday I had a proctocolectomy and in jan 2014 had my takedown.Its tough at first but so much better than what could have been.
Life preserving. Different in my mind because it isn't life saving, we have time to make the choice versus many here who immediate death was their option. It is both easier, and harder because our is dysplasia. Fear of cancer or fear of giving up the life you know now. For me, I was unwilling to wait and pray I got it before it was CRC was present or had Mets. And, I figured better to have a surgery while healthy and fewer medical problems because who knows what tomorrow holds. If you want PM me. I am willing to chat with you about it. Good luck.
funny story, well not too funny. I had my colon out due to low grade dysplasia throughtout. When i had my jpouch done, the final biopsy result on the colon stated no dysplasia!! And I had the second opinion done at Cleveland Clinic with a fluroscope with special dye.
My colon was also taken out due to dysplasia. It was low grade to indeterminate dysplasia at first. We did another scope 4 months later after upping my UC medication to make sure it wasn't just inflammation. 4 months later, the biopsies revealed several areas of moderate dysplasia, which meant it was time for my colon to come out. Surgery was within a couple months of that. When my pathology came back after my surgery, I had several areas of high grade dysplasia as well. So for me, I went from low grade to high grade in less than 6 months. I wouldn't wait much longer if you're already at high grade since there is no next level other than the diagnosis you don't want. So sorry to hear this...it was pretty shocking and heartbreaking news for me as well when I received it.
Along the way to getting a J-pouch one of the gastroenterologists I consulted said, "You know, you don't need a colon at all! So what if you have multiple bowel movements per day!" That was all she wrote.......over 10 years ago. She was right!