Colorectal cancer risk and UC

When I first was diagnosed I got pretty scared about getting cancer. I had people basically tell me I was going to lose my colon or get cancer...for sure. Some of these people were doctors.I was actually told by a GI 2 years after diagnosis that I needed a colonscopy every 6 months if any inflammation was present and every year if in total remission. Well I don't really believe them anymore. The actual science(research and analysis) paints a much more positive picture. This medical article is the most detailed I could find but many others state similar risks. I can't find any research to support the heavy use of colonscopy in all UC suffers or the astronomical risk factors often stated in news articles.

www.uptodate.com/contents/colorectal-cancer-surveillance-in-inflammatory-bowel-disease

Some snippets:

No increased risk for those suffering from pancolitis for 8-10 years
No increased risk for left side for 15-20 years
Possibly no increased risk for proctitus and proctosigmoiditis
Once you reach 30 years the increased risk isn't that alarming.2-3 times the normal population's lifetime risk.
Significant increased risk for those with PSC but this can probably be reduced with ursodeoxycholic acid
5ASA maintenance reduces cancer risk and many UCers dying of cancer didn't get the benefits during their entire time with the disease.
Removing the colon for mild dysplasia is highly controversial but commonly done.

Why don't doctors tell us this stuff?

I really have no problem with patients that want colonscopies all the time. I just don't unless the science supports it, and feel the stress from getting unnecessary tests and being scared with overblown risk of cancer negatively effect my health. And then there is the expense.

I'll play devil's advocate. One of the tough issues facing GIs here is that it takes a relatively long time, on average, to make a positive diagnosis of IBD colitis. The data show an increased risk after 8-10 years for pancolitis, for example, but it can be hard to confidently say when that clock started ticking.

The other thing which is even tougher is that the typical early symptoms of colorectal cancer are generally indistinguishable from IBD symptoms. Most people without IBD seek screening for CRC based on symptoms like diarrhea, increased frequency, thin stools, blood in stool, and tenesmus. Sound familiar??? While a pancolitis patient isn't at an increased risk of developing cancer in the first ten years, they are at a HUGELY increased risk of ignoring early cancer symptoms. It's really hard if not impossible to look at a person with IBD and say if those symptoms are due to an active flare or due to cancer. The only way to make that determination is with a scope, so while a person with IBD has active disease, we have to scope frequently.

My family doctor insists that I need a colonoscopy every year, but my GI thinks every two years is enough at this point. I actually thought the risk was higher than it really is.

I have two first cousin (each born to a different one of my father's sisters) that died from colon cancer in their 50's so I still worry about it from time to time.

Pluot,

The fault in your first argument is the stats are based on when diagnosed not when you actually got UC. In other words, the clock starts ticking for statical purposes at diagnosis.

Your second argument probably is valid for some people with UC. It makes sense that frequency and severity would increase risk but I can't find any studies on that. Of course many UCers go years with no problem..maybe most do. The thing about colon cancer is that fast growing types are extremely rare. Not sure that a doctor would order a colonscopy for a non-UCer that had those symptoms and a recent colonscopy to detect cancer. More likely to rule out IBD or another problem. If I had pancolitis, I would be more worried. I lost a recent article that pointed out that the colonscopy has no proven superiority over the occult blood test or the signoidoscopy for detecting cancer in the general population when they have no symptoms.

fruitgirl,

Almost all GIs want to do a colonscopy on new patients. If they are claiming its for cancer surveillance(mine recent GI did), I say BS and won't do it. If they question the diagnosis or want to double check your prior doctor, I could accept that but I do not think they have to explain it and accept it if I declined. Pretty sure that the medical guidelines only recommend blanket regular colonscopy in those diagnosed for cancer surveillance though. I have found nothing indicating that taking peaks is beneficial to those with UC or needed to check disease activity. Your doctor may have a reason and just didn't tell you. I am very puzzled why the sigmoidoscopy is so little used on people with distal disease. It's way cheaper and can be done in the office.

This is an interesting post.

Instead of getting a colonoscopy done every year, I recommend getting a few blood tests done. I'll mention a few blood markers that predict health better than a colonoscopy would. A colonoscopy just screens for colon cancer, but it doesn't rule out other health issues that increase the risk of colon cancer.

The markers that determine health outlook are CRP, serum homocysteine, serum ammonia and possibly a VAP profile. If you eat crap or smoke, chances are these are going to be very high. If these are high, you're on fire and at high risk for something or some event in the future.

IMO, to me, it's a scare tactic that doesn't look at the real issue, which is overall inflammation. I just think most mainstream doctors are charlatans when it comes to this. The statistics don't lie in your case -- the risk is only minutely higher for those with UC, primarily because inflammation is the key player. We know that inflammation isn't just limited to the colon.

Post Edited (StealthGuardian) : 11/7/2013 12:33:18 PM (GMT-7)

Pluot,

Does a 6 month delay involve a significant increase in risk? Probably not and the hypothetical UC sufferer is more likely than the typical non-UC suffer to have had a recent colonoscopy...I think. 80% of colon cancers are adenomas which are slowing growing, easy to detect early as precancers, easy to remove. The colonscopy frequency for the general public and benefit of the colonscopy is based on that. You are going to get a colonscopy at that frequency(or more) in the guidelines for UC.

One of the issues that has come out with the three big treatable cancers(breast, prostrate, colon) is that early detection doesn't help at all with the most lethal types because the develop and grow so fast. The ones you treat often aren't going to shorten your life.

I am not trying to argue that people with persistent symptoms should not get diagnostic colonscopies. The majority of us that respond to maintenance meds don't fit in that category. Do you agree that a doctor insisting you have yearly colonscopies beginning with diagnosis are wrong?

It seems to me that if a UCer is in remission, a colonoscopy could put the person's health/remission at risk just because of the wipe out of bacteria in the colon.

Lodi that is my issue right now. I feel it would be nice to see how things have changed since last Nov. when I had my first and only colonoscopy. I'm having very few symptoms right now, but fear "cleaning" myself out from the prep as I would lose the bacteria I've gained from FT.

UCJuly2007,

I don't think you shouldn't. I think it should be your choice. I just think doctors need to educate us better as to the risks and we should ask questions then make that choice. Maybe some doctors need to educate themselves. Most posts on this board indicate what GIs are telling us is not the reality for cancer risk. That those with proctitis and proctosigmoiditis probably have no elevated lifetime risk for CRC absent other factors is big news to most I am sure. That is a very large percentage of us. GIs as a group in this country(USA) don't follow their own specialty group guidelines regarding frequency of colonscopy or using both oral and rectal meds. How does not using rectal meds effect cancer risk? Using them is proven to reduce inflammation and reduce frequency of flares. Colonscopies are not a science backed tool to manage UC. Diagnosis and cancer surveillance not treatment. That GIs divert from guidelines for their big money maker test is pretty alarming. That a doctor wants to do yearly after 8 years doesn't alarm me as I think many are taught to do that. You might want to follow that advice but not wanting to follow that advice should be supported as your choice by your doctor. I don't think that happens now. I am OK with requesting more than a doctor recommends also.

Another thing to question is why sigmoidoscopies are so rarely used in those with distal disease and for cancer surveillance in the general population. The science indicates that they are just as good. Cost is 1/3 and it can be done in the doctors exam room.