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Total proctocolectomy recommended even though my UC is mild

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Posted 7/30/2014 2:24 AM (GMT 0)
I've had UC/PSC for 23 years and I've been "fortunate" in that it has been mild and previously easy to manage flares with a quick burst of Prednisone. Latest colonoscopy showed low grade dysplasia for the first time. Doc says that, in someone with over two decades of UC/PSC, LGD is an indicator and there is a high risk of developing cancer. Leads to a recommendation of total procto-colectomy with j-pouch.

Met with surgeon today and he said majority of colectomy candidates are easy to recommend surgery because symptoms are so bad that quality of life will be dramatically improved with surgery. The thing is that I don't feel too bad at all - my symptoms are really mild and I don't have discomfort or urgency.

Has anyone been in a similar situation (US/PSC case history and faced with recommendation for surgery when you don't feel too bad)?

I have booked surgery for end of next week because my circumstances absolutely require this to be done right away or else delayed 6-12 months minimum - if at all - with ongoing scope surveillance every 3-6 months as alternative course. But I'm now freaking out because I could be one of the 50% (statistically) who never develop cancer in this type of case. and should never have had the surgery!

Any insights are welcome.
Posted 7/30/2014 3:30 AM (GMT 0)
For me a 50% chance of colon cancer would be too high for me to risk it. This was one of the reasons that I had surgery recently, both of my grandfathers had colon cancer and I had UC for 8 years plus my UC symptoms were severe.

I'd head over to Jpouch.org , you'll find more and better answers to your question about the risk of colon cancer and jpouches there.

I am really happy with my Jpouch but my UC symptoms were severe.
Posted 7/30/2014 3:36 AM (GMT 0)
Get a second opinion! The surgery is not a panacea. My life with a colon was much better than without one. Every day is a struggle to keep my dreams and dignity alive.
Posted 7/30/2014 3:45 AM (GMT 0)
Honestly, if your doing "fine" now, I wouldnt even consider surgery (personal biases aside). When someone says the word cancer, we tend to have a knee jerk reaction and start going to the extremes. But colon cancer is a very treatable cancer (especially if caught early). Since you have UC, you probably get scoped regularly, and the older you get, the more often you will be scoped. In my opinion, this much surveillance should be enough for all but the most aggressive forms of cancer.

Here are some stats on colon cancer survival:

http://www.cancer.org/cancer/colonandrectumcancer/detailedguide/colorectal-cancer-survival-rates
Posted 7/30/2014 4:35 AM (GMT 0)
Even with severe dysplasia they did not do surgery on a family member. They recommend another scope in a few months to do more biopsies and see just how far the abnormal cells reach.
Is yours everywhere, or just localized?
Posted 7/30/2014 4:48 AM (GMT 0)
no insight, just my opinion:

"I have booked surgery for end of next week because my circumstances absolutely require this to be done right away" = no


" or else delayed 6-12 months minimum - if at all " = yes
Posted 7/30/2014 5:59 AM (GMT 0)

soystud said...
no insight, just my opinion:

"I have booked surgery for end of next week because my circumstances absolutely require this to be done right away" = no


" or else delayed 6-12 months minimum - if at all " = yes

Agreed. There is no rush and this is certainly NOT something to rush
Posted 7/30/2014 6:00 AM (GMT 0)
Dr. Daniel Present, one of the top IBD subspecialist gastros in the U.S., has commented many times that low-grade dysplasia can resolve itself-- so a patient should not rush to colectomy on fears of cancer. He recommends follow-up monitoring. It sounds like you should definitely get a 2nd opinion, possibly with him if his location works for you. Best wishes! / Old Hat (33 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 7/30/2014 3:13 PM (GMT 0)
I always thought colon cancer was slow growing and with c-scopes very preventable. Sorry you are faced with this decision but my choice would be "watchful waiting".

Can you ask your doctor a follow-up question such as "What percent of people with LGD develop colon cancer?" And I'd ask whether he said it was a "higher risk" or "high risk". Second opinions are very worthwhile when it comes to something as big as this.
Posted 7/30/2014 3:18 PM (GMT 0)
Found this paper online. You should print it out and discuss with your doctor.

www.ncbi.nlm.nih.gov/pmc/articles/PMC3046461/

Basically says it is a controversial area of treatment and not quite as cut and dried as you initially were told.
Posted 7/30/2014 3:54 PM (GMT 0)
Get a second opinion but if the same thing is recommended I would have the surgery. The risk of colon cancer would scare me. Not a fun way to go....my cousin died at 50 from colon cancer and he suffered horribly. And it could have been totally avoided if he hadn't been so stubborn.

I have a j pouch not because they found dysplasia but because my UC was severe, I didn't respond to meds and I had zero quality of life. I can see where this would be a really tough decision for you so that's why I say get a second opinion. Good luck.

PS- for the record, I love my j pouch.
Posted 7/30/2014 4:57 PM (GMT 0)
Thank you all for your thoughts and links - all very helpful. I'm really inclined to cancel surgery and book next scope for a month or so (last one was early June.)

I've found that the mind has a big role (not trying to deny what is going on) - it just doesn't feel right to be rushed like this.
Posted 7/30/2014 5:34 PM (GMT 0)
Did they mention anything about your PSC when they were talking about LGD? My grandfather's colon cancer moved from his colon to his liver which is pretty common, I'm just wondering if the PSC is something else that needs to be considered in your situation.

Most of this stuff is slow moving so you do have time to make your decision. I'd get a second opinion from another GI/surgeon and maybe a liver specialist too.
Posted 7/30/2014 7:25 PM (GMT 0)

ks1905 said...
Did they mention anything about your PSC when they were talking about LGD? My grandfather's colon cancer moved from his colon to his liver which is pretty common, I'm just wondering if the PSC is something else that needs to be considered in your situation.

It's actually because of the PSC that they are more concerned - I'm doubtful they would be pushing for surgery if I only had UC. Although I have never had any symptoms relating to the PSC, the risk is apparently quite a bit higher in PSC patients.
Posted 7/31/2014 1:29 PM (GMT 0)
Hello. I am brand new to the forum, and your post caught my eye. I have had UC for 23 years and had a liver transplant in Oct. 2013, due to PSC. Aren't we lucky? Why have 1 autoimmune disease, when you can have 2? lol.

I agree with others that you should wait and monitor things, especially since your UC is very mild and you don't have PSC symptoms. Plus, it sounds like it doesn't feel right to you, and I don't blame you. It just sounds like such an aggressive course to me. I don't really understand the thought process they are using to justify removing your colon just because you happen to have PSC also. My UC had always been easily controlled with very low dose asacol, and I never knew what a "flare" was, until about 4 months after my transplant. Now I am on high dose Asacol, which I know is "child's play" compared to what others' meds are, and I'm working my diet modifications pretty hard to avoid going on pred or 6MP. I don't want MORE immunosuppression, for goodness sakes, lol.

Anywho, I know that you will be different from me, of course. Just please move with caution. Our digestive organs are tied so closely with one another, and messing with one means disturbing the others. Your liver might be a sleeping bear. If he isn't bothering you, don't go poke him with a stick.... ;)
Posted 7/31/2014 2:41 PM (GMT 0)
k-del, thanks for sharing your story. I hope you are doing well with your adjustments. I've only found this forum in the last month and insights and conversations are amazing. I've found it so helpful that people are willing to share and bring perspectives that then help me feel more confident in how I move forward.

I have decided to cancel the surgery today and schedule another scope for 1-2 months from now. If the next scope shows similar results I will seek a second opinion and then make a judgment from there.

In the meantime I am going to make a huge effort on my diet.
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