High Grade Dysplasia Found

[DeeDeeUC]

Hi, I'm new to this forum. Just got back from seeing Colo-Rectal Surgeon. My pathology report showed High Grade Dysplasia in the Cecum. Both my GI and the surgeon he referred me to are urging me to have my entire colon removed because I have been dealing with Severe UC since 2008. Have been doing great on Remade and Methotrexate but they say High Grade Dysplasia indicates I am one step away from developing cancer and should remove the colon to avoid this. Anyone else have their colon removed as a result of dysplasia? Would you recommend a 2nd opinion?

[zx10guy]

I would heed the warnings from your doctors and surgeon about the high grade dysplasia they found in your colon. But getting a second opinion would be prudent.

My recent colonoscopy found a polyp in the opening of my appendix. We went "treasure" hunting after my CEA spikes big time during my 6 month check up. CT and PET scan didn't pick up anything. GI doctor took some biopsies of the polyp but couldn't get samples of the areas of the polyp hidden by my appendix which also meant he couldn't remove the polyp. Biopsy results was high grade dysplasia. Recommended surgery. CRC surgeon originally wanted to do a cecectomy to remove part of the cecum and the appendix. But after I told him about my CEA spike, he did a full on resection.

The pathology after surgery came back with some cancer found on the polyp but I was still staged as Stage 0. A follow up CEA was done several weeks after surgery which showed a drop back to my normal CEA number which pretty much confirms what little cancer cells there were in my polyp was probably responsible for the CEA spike.

[DeeDeeUC]

Thank you for your response. I'm so sorry to hear you have had to go through the surgery an hope you have a speedy recovery If you don't mind my asking, how did your surgery go? Are you doing ok? I feel perfectly fine right now so the thought of having major surgery to remove my entire colon and the addition of a temporary stoma bag and then a 2nd surgery reversal to a J-Pouch for something that may or may not turn cancerous in the future is a difficult decision to make. Studies have reported that UC patients have increased risk for colon cancer and I certainly don't want to risk getting it but this is a major life altering decision. My GI said there is a 30% chance my high grade dysplasia could develop into it. Obviously we all want to avoid cancer but removing my entire colon and going through all of this to avoid a possibility of what might not even evolve is a tough call to make. Would you suggest a 2nd colonoscopy or taking my pathology report to another GI to look at?

[Andrea1976]

Can you get a 2nd opinion from a Cancer Center? I was in a gray area as well with my malignant polyp. One colorectal surgeon was willing to operate since my risk for lymph nodes involvment was 3-6% in his opinion. Cancer center said no to surgery and I was even trying to convince the surgical onco at the center. He said that's what he would recommend to his mom, wife or sister...

[zx10guy]

Hi Dee,

Thanks for asking. The recovery from the surgery has been a challenge this time. While I got out of the hospital faster than the first time I went through this procedure (surgery Friday and out of the hospital Sunday), I had to deal with two rounds of infections. I had a flare up a little over a week after getting out of the hospital which required 2 oral antibiotics and a topical antibiotic cream to knock it down. The second time was about two months later which required another round of antibiotics. I'm just now starting to feel better. The surgery was at the end of July. Surgeon said I had a reaction to the sutures he used. He couldn't understand why I had a reaction this time around.

If it wasn't clear, this is the second time I have had to deal with cancer. The first time was a large tumor in my descending colon which ended up being Stage 3B. That was back at the end of 2011.

I would definitely consult another doctor for a second opinion. What you're facing is a serious decision. The second doctor will determine what more needs to be done in terms of additional diagnostic procedures. If you go to a major cancer center, they'll probably request the slides from the pathology department you used to review them.

I hope things work out well for you.

[Yolanda]

I would take whatever choice retained as much of my natural body as possible! Giving up one's colon entire seems awfully drastic. I lost my rectum and anus and I grieve yet for this simple maligned body part. The cost too, of buying colostomy appliance parts is ridiculous and supports an exploitive industry gleefully using our insurance (I have no supplemental insurance) as an excuse to over charge for some cheap chinese plastic stamping manufacture. I even learned that our local store was capitalizing for awhile. She's gone now but the previous manager actually stymied the ordering of cost saving items like flushable liner bags to improve on the profit margin. If we all saved money using flushable bags, well by golly, the store would lose money... I'm so glad she got canned! There's people trying to design appliances on 3d printers to make home made systems just to keep up with costs. So yeah, I'd be finding alternatives if possible before giving up the colon.
In the end, however, your doctors are the trained pros, they know more than we do, so don't brush them off. And maybe get a 2nd and 3rd opinion on the radical slicing.

[ChiMama]

Hi DeeDeeUC!

Sorry for the reason you found the boards but this is a great place to get support!

I agree that getting a second opinion is essential. I did, and went with the second doctor for my surgery. So glad I did!

I had my first colonoscopy in April, Dr said there was "an area of inflammation," and pathology of 3 specimens all came back as "high grade dysplasia." He sort of downplayed it, but said it definitely needed to come out.

Turned out to be much larger, adenocarcinoma that stuck out quite far and had grown deep into the colon wall - 5.2 cm x 4.1 cm. As it was explained to me, if the biopsies catch the edges, it can show in pathology as less severe than biopsies taken from further in. Actually, knowing what I know now, looking at the original colonoscopy pictures I can see the tumor and it's definitely a tumor, not "inflammation."

As for the removal of the entire colon - even more reason to seek a second opinion. Make sure you get as much information as you can, ask tons of questions, and that you trust your medical staff.

[Canada777]

I would urge you to seriously consider the surgery. My bf had chrons disease for several years and about 2 years ago he had a colonoscopy that showed high grade dysplasia. He was advised to have his entire colon removed at that time as a preventative measure. He struggled to accept the surgery for only a risk that cancer may develop at some point. Took him about 10 months to wrap his head around the idea and book surgery. The day of surgery our lives changed. Stage 4 cancer was found and he was 29. We found out later that up to 30% of people with high grade dysplasia already have cancer. He just recently had to have hipec which is a much more intense surgery. The stoma is the easiest part. It really isn't as scary as it seems at first.

[flyingfrog]

Hi Dee,

I had my entire colon removed in June because of cancer risk, and life is going great. It sounds like your doctors are convinced that your colon needs to go, and I would take that advice seriously. Butt, a second opinion is definitely warranted because you have a few options based on your disease and lifestyle. I elected to have a total abdominal colectomy (aka subtotal colectomy), which removes the entire colon except for the rectum. The small bowel is attached directly to the rectum. As you probably know, the j pouch will remove the rectum, and the docs will form a "new rectum" with your small bowel.

There were many, many factors that played into my decision, the most important being that the docs thought the odds of cancer in my rectum were much lower that the rest of my colon based on my colonoscopies. I've made peace with the fact that my chance of rectal cancer is stil there, and I will likely move forward with the ileostomy if cancer ever occurs. In the mean time, I'm an active duty military officer who was returned to full duty and I'm raising two intense kids. I hit the restroom a couple of times more than most, and I keep bananas, rice, and yogurt in my daily menu. I can't promise that your outcome will be as good as mine, but you have to make a decision with the info that you have. Life is too short to worry; make the best decision that you can and move out!