Mislead/Misdiagnosed

Bobish, I'm sorry you're feeling so badly advised. FWIW, I think your doctors did the right things for you. Colonic cells are replaced at a remarkable clip. Dysplasia isn't like cancer, in that it can come and go. It's a warning sign that there's likely to be a bullet heading your way. Waiting until you're 100% certain turns out to be an awful idea; the folks here who are trying to get their pouches working after radiation therapy are well positioned to explain why.

A few years back I had an innocent imaging study that incidentally showed a mass on my kidney that was suspicious for cancer. For tricky clinical reasons a biopsy isn't considered appropriate in that situation, so I had kidney surgery. The surgeon's estimate was a 75% chance that it was cancer, nearly 100% curable at the early stage it appeared to be at. After the surgery it turned out to be benign, which I described as the crappiest great news I'd ever received. No one did anything wrong, but I would have been better off without the surgery. In your case it was most likely a matter of time until you *really* regretted the delay.

Hello, Bobish.

I also had UC. I had it more than 30 years. I treated it through diet choices. No medication even though it was prescribed to me, but I felt worse while on the steroids, so I stopped taking them years ago. I didn't have very many flare ups over the years, perhaps two or three per year where I felt really unwell, but nothing major, and BMs were one or two a day when I was well. I always followed a good diet, fresh veg, fresh fish, chicken, steak, no junk food except a Pepsi once in a while, or a bag of chips, non smoker, no drinks except for celebrations.

So, normal, right? After my last colonoscopy I was told I had a small tumour. I was shocked. Biopsy was sent to pathology and determined to be cancer. Very small spot, early detection, rectal. My colon, however, only had its usual inflammation but no polyps. After many tests, second, third opinions, all doctors and surgeons and oncologist agreed that along with the cancerous spot my colon had to be removed because of the many years of UC putting me at much higher risk of cancer eventually developing in the colon. Three times the risk. That risk was too high for me. I knew that colorectal cancer, if undetected or untreated, commonly spreads to the liver and lungs. Even though they could not test the colon conclusively for cancer until it was removed, I was fast-tracked through tests and appointments. I had a few moments of wondering why they didn't just remove the cancerous spot and leave my colon alone. Then I realized that if everyone else was pulling for me, and fast-tracking me through the system and getting my results in front of me within a few days, it meant one thing: I could be saved and I was very lucky, and I would pull for myself too. My liver and lung tests were clear and clean.   Leaving the colon intact would have been irresponsible of the doctors and me. Having UC for 10 years is already high risk for developing cancer. I had UC for more than three decades.

After surgery, the pathology on my colon showed low grade dysplasia. Yes, the surgeries and recovery was and is painful and difficult, but I would not have left my colon in. I could not take that risk. I didn't want to live under a constant threat over my head, never knowing where or when the bullet would be fired. What if I'd left it in and cancer spread uncontrollably, undetected, to the liver or lungs and there was no saving me? I couldn't go back and say why didn't I let them take it out when I had the chance. They were giving me that chance now. I want 40 more years, not months. Bobish, know I did the right thing and I feel safe that the actual cancer was removed along with the possibility of it showing up in the colon and spreading to liver, lungs, brain. That will never happen because I no longer have my colon. I'd rather deal with pouchitis then live under threat. You are also safe now: You'll never have to consider chemotherapy or radiation to treat your colon cancer, and you'll never fear for your organs because of the spread of cancer from your colon. Try not to regret letting go of your colon. Losing an organ that is five feet long is significant, no small thing, and you are wondering how and why you had to do this. I know when you think of it you feel you were under a falsehood to make a decision. Your doctors might have been more gentle or patient and explained it differently, less brutally, as you say. In the end, you may have come to the same conclusion, now, or at the next colonoscopy if cancer cells did show up. I don't think that surgeons would put anyone through this kind of brutal surgery unless they were more than 50% sure the eventual route your colon's cells would take. Maybe I'm not saying what you want to hear, but I feel that our lives were saved, it's just a difference of now or in a year, and with or without the word dysplasia. My spot was 2 cm in size. No lymph nodes were involved. No chemotherapy or radiation needed. I went from one or two BMs with my UC colon, up to six or nine with my J pouch, but I feel I bought myself an enormous chance of long life. I wish I'd remembered to ask my surgeon to take a picture of my colon when it was out, as a souvenir.

Thanks both Scott F and Winterberry, actually you did tel me what i wanted to hear, that im not alone in this scenario and that regardless i probably did the right thing. 

ive had sustained results saying there is something strange going on, so i guess getting it sorted is a good thing.   Im just annoyed because every time i went back they were a bit more alarmist about my prognosis and i always thought they were encouraging me to have to the op based on statistics (ie my age, and the amountof time i had UC etc) rather that my actual situation.  The last doctors visit was the 'shock and awe wake up  call' which was unnecessary and to be honest has eroded my trust in the system a bit.  

On a previous checkup blood work suggested there was something wrong with my kidney.  I went in for tests and got the all clear, and blood work showed nothing unusual again.  Docs say it was a 'blip', ive always wondered if my samples got mixed up with someone else...fortunately no harm came of that, but i cant help wonder about this latest experience.

Thanks for sharing your experiences guys, really appreciated 

I was going to have a prophylactic colectomy after over 20 years of pancolitis (mostly remission). I never had any diagnosis of dysplasia. But, a severe flare made the decision for me about a year earlier than my plans. No regrets.

But, risks based on statistics do matter and doctors base their recommendations based on multiple factors: your personal history and cummulative data from many decades of UC treatment are the main considerations. There are no crystal balls, just best judgment. Even though your colon was pristeen at the time of removal, it does not mean it would be a year later. You had the warning signs.

As an aside, I had symptoms of an adrenal tumor. CAT scans showed something there. I was scheduled for an adrenalectomy. Turns out my adrenal gland was fine. The tumor was a neuroganglioma and part of it is still there (fortunately benign). They do the best they can with available information. An inexact science to be sure.

Jan

I also had dysplasia (not sure what level), along with severe pancolitis, and my age (over 60), although I was not diagnosed until April 2015.  I tried different meds. , as well as Remicade (which stopped working after a few mos.), so I made the decision to go ahead with the j-pouch, based on the information I had.  I had been very ill, losing 35 lbs., as well as having other complications and wanted my life back again and did not want to spend years trying different medications/biologics, so for me this was the best time to have the j-pouch.  My pathology report also did not show anything significant as far as cancer cells, but I considered the dysplasia a warning sign.  I went through this before with dysplasia as well and opted for a hysterectomy so as to not have that worry as well.  I guess, though, we can only go with what information we have to make these difficult decisions.

Just looked at my pathology report again.  Apparently it showed hyperplasia, so better safe than sorry later.

Thanks for your thoughts guys.  I had a suspicious area, i changed everything about my lifestyle (diet,water,stress,outlook,exercise,supplements etc) to prevent any developments, lump seemed stable,  maybe I'm kidding myself but i was figuring the statistics applied less to me, then i get this heavy news which triggers my decision for an op which turns out to be wrong.  

I do know any doc i saw would have recommended an operation even without the dysplasia, but i made my decision based on something that wasn't there, that does irk me somewhat. Thanks for sharing your experiences guys, sorry you all had to go through similar too.

same here, two different hospitals and doctors stated I had dysplasia and report on colon once it was out---- no dysplasia

Sorry (/Happy?) to hear that poucho.. wow I think the docs need to be more honest about the reliability of these tests.