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Colectomy with Low Grade Dysplasia

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Posted 4/30/2013 8:01 PM (GMT 0)

I've had UC for 18 yrs.  Had colonoscopy 3 weeks ago.  Dr called with biopsy results and said there was a minute spot of low grade dysplasia.  She said I needed another colonoscopy in 3 mos where she would biopsy that area more.  She mentioned that many recommend a total colectomy with LGD.  I have been so sick with worry since then, I don't know how I can wait 3 mos to even know.  Does anyone know is the initial diagnosis of LGD is ever incorrect or is it highly likely that I will need the surgery?  And has anyone had the surgery and can offer any info?  I appreciate any help.  Thank you.

Posted 4/30/2013 8:52 PM (GMT 0)
I'm sorry to hear that you suffer like this. Will you do the colectomy? Please make sure they get everything including rectum. Are you a candidate for a J-pouch some time?

I'd rather go with the surgery than risk cancer. I'm happy they found it so early.
Posted 4/30/2013 9:50 PM (GMT 0)
I would get an additional second or even third opinion on the biopsies from a top pathologist, eg at Mayo or cleveland clinic (you could have them sent there). Bear in mind that LGD is very easily misdiagnosed (false positive) whenever there is inflammation present. It is somewhat controversial as a basis for surgery.
Posted 5/1/2013 6:54 AM (GMT 0)
This topic comes up every now and then on the forum so there probably are some archived threads that could give you more info. In general there is disagreement among doctors as to the need for colectomy in case of LGD. The condition sometimes resolves itself, which is the main reason for scheduling a follow-up scope by 6 months. Try not to panic and consider getting a 2nd opinion from a rational IBD gastroenterologist like Dr. Daniel Present. / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 5/1/2013 10:07 AM (GMT 0)
I've been diagnosed with LGD now for over 15 years and it always turns out to be a false positive or the retest is negative. There is no exact science to it. Just keep getting retested. Dr's have no choice but to recommend total coloctomy. They have to follow protocol. Doesn't mean it's the right thing to do.
Posted 5/1/2013 11:38 AM (GMT 0)
I experienced the same results from a colonoscopy in 2011. The AGA recommends total colectomy so it seems that most GIs follow that standard even though it's considered a "gray area".
A less drastic approach is more frequent scoping.

I've had 2 colonoscopies since the "discovery" with over 100 tissue samples biopsied and there has been no further sign of dysplasia.
It's unfortunate to have this diagnosis and spend a year worrying for nothing.
Try to relax and be optimistic.
My GI wanted to scope every 6 months, then changed to once a year after no dysplasia was found in the last one.
Remember, there are risks associated with colonoscopies, too.
Best of luck to you.
Posted 5/1/2013 11:51 AM (GMT 0)
Another important factor is how much dysplasia you have. One line of thought these days is that Dysplasia in colitis can actually be seen and measured and possibly removed.

They use a technique called chromoendoscopy for that. It is something you might ask about. It is a dye that makes the dysplastic lesion easier to see.

If they can find it, and it is only one, or a couple of small lesions, then they may be able to remove it through the endoscope. At the very least they can give you more information. For example if you have multiple dysplastic areas, or a large field of dysplasia that would be good to know for making your decision.
Posted 5/1/2013 12:29 PM (GMT 0)
There are a lot of jpouchers who had surgery for LGD. You can meet them at www.j-pouch.org and get their experience with the decision to go forward or wait.

Sue
Posted 5/1/2013 3:17 PM (GMT 0)
Dura-Ace

How many times in the 15 years did they detect low grade dysplasia??

Do you think they were false positives?? Or do you think the dysplasia actually comes and goes?? Or do you think you simply have very small patches of lgd that are not progressing??
Posted 5/1/2013 4:03 PM (GMT 0)
This is the 1st time they detected dysplasia. She said it is a minute spot but it is there.
Posted 5/2/2013 12:11 PM (GMT 0)
Mamacat - I'd ask about chromoendoscopy and endoscopic mucosal resection.

If it is a minute spot that can be localized it may be possible to remove it during a colonoscopy.

The reason to get the colectomy would be if you thought the minute spot was really part of a larger lesion, or if you thought there may be more lesions that weren't detected.

It's such a hard place to be. From what I've heard, sometimes the minute spot might really be just a minute spot... other times the minute spot is just the tip of the iceburg so to say.
Posted 5/2/2013 8:15 PM (GMT 0)

Ole363 said...
Dura-Ace

How many times in the 15 years did they detect low grade dysplasia??

Do you think they were false positives?? Or do you think the dysplasia actually comes and goes?? Or do you think you simply have very small patches of lgd that are not progressing??

My LGD is always from a second opinion. The first tests come back either no dysplasia or uncertain because of inflammation. Most repeat tests come back negative. It actually has gotten so old that I really don't pay any attention to it. I personally am not going to run off to major surgery based on this kind of scattered results. I feel sorry for folks that have though. Most of them it was completely unnecessary. Just my 2 sense.
Posted 5/3/2013 1:04 PM (GMT 0)
I just want to thank everyone for their responses.  I can't tell you how much better I feel having found this forum and getting info from people who have been where I am.  So much info on colitis here!  I learned more this last week on this forum than I did in 18 years from my GI!

Thank you!!!!!!!!!

Posted 5/15/2013 7:40 PM (GMT 0)
I just came back from the doctor and this is what he said.....

The doc said that the pathologist actually called him when doing the biopsies of my colon and said it looks like I have low grade dysplasia. This is when abnormal cells form in the colon and it stems from my having ulcerative colitis when I was 20. My doctor put me on meds for 3 months back then and I got another colonoscopy after the treatment and he said it was gone so I never took any other medication for it and I am 40 now. He wants me to go back in 3 weeks, June 5, and have another colonoscopy to take more biopsies that he is going to send to John Hopkins university Hospital for a second opinion. I can't imagine having to wait 3 or 6 months to go back! That would be a killer wait. If it comes back positive he said I have to have my whole colon removed. I asked if I would have to have a colostomy bag for the rest of my life and he said no, they would attach a small part of my colon to my rectum. It is a good thing I caught this now because it eventually turns to colon cancer. It is pretty serious. It is just weird because I don't have any symptoms.  A week after the colonoscopy we will get the results back and I will know if I get to keep my colon. I feel fine though, that is the good part I guess! I am hopeful.

Posted 5/15/2013 8:12 PM (GMT 0)
Kristine,

When did  you get your last colonoscopy?  You are lucky they are doing your followup so quick.  I have to wait til July 1st, then wait for results after that.  Its so scary to think about.  I asked my primary care dr. about it last week, and she told me not to worry until I know for sure.  She said a lot of times when people go back for a followup they get a different result.  I hope that happens for both of us.  I think the surgery is called J-Pouch from what I have been reading on this forum. It so hard to think about getting a surgery when you feel totally fine.  I think if I felt sick maybe it wouldn't be such a shock to need it.  Please let me know how you make out.

Posted 5/16/2013 2:08 PM (GMT 0)
I had my last colonoscopy 7 years ago. I usually try for about every 5 but fell a little behind on this one. I was thinking your appointment was coming up soon. I wouldn't worry. I thought the surgery was call a colectomy. Here is a link on it.... http://www.mayoclinic.com/health/colectomy/MY00141

I am glad I don't have to wait that long either! Yikes! Anyway, don't worry, even if you have to have this surgery you can still live a pretty normal life from what I have been reading. I have read that the only negative thing is you have to use the washroom about 6 to 8 times a day. I will let you know how it comes out and I will look forward to hearing how your outcome is! Stay positive!

Posted 5/17/2013 1:07 PM (GMT 0)
I received a call from my GI yesterday telling me they were sending me to see a pathology specialist in Boston in the next few weeks, so I will learn more then.

Has anyone had the surgery all in one step, instead of 2 or 3? I think I'd be more positive about it if it was 1.

Thanks.
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