Are colonoscopies worth it?

It’s time to share something personal again.<p>When I was 20, I vividly remember being in the bathroom at my workplace when a large amount of blood started coming out. I did what any smart, effective 20yo would do: ignored it because I was embarrassed.<p>Fast forward 10 years, and I’d been ignoring it for a decade. It had continued to happen every few months. Sometimes the blood was so bad I’d have to wait up to 20 minutes for it to stop. Other times I would see blood, but no bleeding.<p>These are bad signs. If you see this, don’t do what I did. I was gambling with my life. Remember that popular video game commenter that died from this? Totalbiscuit? He concealed his, and he lost.<p>The most unexpected thing is that when I actually wanted one, the process took over two years. And that was after a year or so of periodically mentioning it to the doctors, who would give me a sheet of numbers to call and I never bothered. Those three years could have been the difference.<p>Turns out, there’s nothing wrong with me. It was hemorrhoids. You might think you’re smart enough to tell the difference. I thought so. I was a cocky idiot who could’ve died from cancer before seeing my daughter get married.<p>Just get one if you see something. The final paragraph of the article pleads you to. The peace of mind alone was worth the small unpleasantness and major logistical annoyance.

I do regular colonoscopies because of a condition. People are worried about the procedure, as I was my first times. Here are some things that I wish someone had told me:<p>- Taking the meds for cleaning out your system the day before is far worse than the procedure itself.<p>- Have a lollipop to stick in your mouth after Each time you take a shot of the laxatives. It helps with the vile taste of it.<p>- If you need relaxing meds or something for the pain and discomfort, they have good stuff handy when doing the procedure.<p>- It only ever hurts if your colon are in bad shape. Colonoscopy doesn’t hurt if you are healthy (and even if it does, they have meds for the pain).<p>- Don’t be embarrassed, the hospital staff do this all the time. They don’t really care about the things you are worried that they might care about.<p>- Wear loose fitting clothes that are easy to change in and out of when you go to the hospital.<p>- Try to relax.

The article doesn&#x27;t cover this, but it&#x27;s worth pointing out <i>why</i> the study asks this particular question. With a single-payer system the Nordic countries want to know what the ROI is if we sent letters out to everyone above a certain age offering a free colonoscopy. The study is well-designed to answer that question.<p>The study does a poor job of helping an individual asking a similar but different question: Is it worthwhile for me to pay out of pocket for a colonoscopy?<p>The latter question is very important in a system that isn&#x27;t single-payer and so this has sparked a lot of debate in e.g the US.

&gt;3. It’s irresponsible to call colonoscopies “invasive” (as CNN did) since that might make people think they are unpleasant and not do them.<p>LOL. It hard to imagine anything much more invasive than having a metal tube (with light and camera) shoved up your arse. It is definitely unpleasant. I speak from personal experience. That said, it is less unpleasant than bowel cancer. So don&#x27;t be put off if you really need to get it done. It&#x27;s not <i>that</i> bad.

In <i>The Value of Colon Cancer Screening</i> (<a href="https:&#x2F;&#x2F;www.blackliszt.com&#x2F;2023&#x2F;01&#x2F;value-of-colon-cancer-screening.html" rel="nofollow noreferrer">https:&#x2F;&#x2F;www.blackliszt.com&#x2F;2023&#x2F;01&#x2F;value-of-colon-cancer-scr...</a>), David B. Black argues that colonoscopies are a net negative, based on the “high confidence result of harm based on millions of patients [1], vs. the nearly identical low-confidence results of benefit from the NordiCC study”.<p>[1] “14.6 major bleeding events per 10,000 colonoscopies (95% CI, 9.4-19.9; 20 studies; n = 5,172,508) and 3.1 perforations per 10,000 colonoscopies (95% CI, 2.3-4.0; 26 studies; n = 5,272,600)”

Given people don’t read the full article, and that feels pretty important in this discussion, I will quote the way it ends:<p>&gt; One thing is clear: Screening works. If you’re of the appropriate age, please get screened. If your tubes are acting funny, please get screened without delay. The best method and the level of benefit are debatable, but we know it helps. Use a stool test if you want (multitarget DNA test if you can), or a colonoscopy, or a sigmoidoscopy, or a “virtual” CT colonoscopy, or a crazy edible camera. Do one of them. Statistics show colorectal cancer is highly curable when caught early, and now that we have feisty checkpoint inhibitor immunotherapies,it’s probably even better now. Just do it. Your tubes will thank you.

If you&#x27;re worried about getting a colonoscopy, don&#x27;t be.<p>I got one last year and it was the best sleep I ever got.<p>It was two days of the prep stuff you drink to shit your brains out which is a little rough, but I have a bidet, no big deal.<p>Then you go to the hospital, you dress down into a gown, nurses come in, they put some things on your chest, you get a little cold, they put a nice warm blanket on you, they start an IV, they wheel you into the procedure room, and then you pass out.<p>You suddenly wake up and I felt like I had an amazing nap and I was incredibly comfortable. Then you have someone drive you home and that&#x27;s all there is to it.<p>It was really no big deal.<p>The only thing that sucks is you pretty much just drink powerade and eat chicken broth during the prep.

This is actually a nice summary of how a clinical trial is more than just &quot;did it have a positive or negative result?&quot;.<p>Every single trial introduces some bias through the way it&#x27;s designed. Good trials try to minimize bias or at least limit it to things we know don&#x27;t introduce bias.<p>The article does a nice job at digging into the nuances of the trial design and how it may influence (or not influence) the results.<p>That&#x27;s why the &quot;reference wars&quot; you see on HN are so pointless. It&#x27;s easy to just find a paper that supports your position. But trials are of varying quality.<p>What you see in this article is what normally happens with most major trials - results get discussed, challenged, discussed some more. After a few months doctors finally settle on the main takeaways. Sometimes it takes years.

As far as I know, countries outside the USA that recommend it are Switzerland, Germany, and Austria: <a href="https:&#x2F;&#x2F;publichealthreviews.biomedcentral.com&#x2F;articles&#x2F;10.1186&#x2F;s40985-018-0080-0" rel="nofollow noreferrer">https:&#x2F;&#x2F;publichealthreviews.biomedcentral.com&#x2F;articles&#x2F;10.11...</a>

My uncle had one, it almost killed him when the probe breached his colon causing an internal bleeding. It was done with anesthesia, which according to him could be a major contributor to the incident.

I don&#x27;t know any gastroenterologist over 40 that hasn&#x27;t had one (Australia). Do I take the government advice or copy what the doctors themselves are doing?

My doctor recommended Cologuard, a test of your stool sample for cancerous DNA, instead of a colonoscopy. I can&#x27;t imagine taking a colonoscopy now.

My father died of colon cancer at 52, so I&#x27;ve been getting colonoscopies every 3-5 years since I was 22. Yes, that&#x27;s really early, but in the span between age 30-33, I grew a large polyp. My doctor removed it and it turned out non-cancerous, but if I waited until 40+ to start who knows?

This is very common in France. I think all my 50+ acquitances had one.<p>There is a national screening campaign based on sending a sample of your stool, but getting a colonoscopy is a matter of asking your doctor.<p>It is true that colonoscopy is not the <i>first</i> mine of prevention but anyone who asks will get one. Free of charge.

People here talking about you deciding whether or not you got cancer from the colour of your stool. Here is another piece of medical advice:<p>If you have blood in your stool, see a doctor. Period.

People struggle with binaries. It is very likely that regular colonoscopies are net harmful for most people, and very beneficial for some.<p>The population isnt homogeneous.<p>Some people have significant risk factors, like family history, others do not.<p>We don&#x27;t ask if everyone should start wearing glasses at 40, so why this?

There&#x27;s an interesting point made in a podcast (Huberman, perhaps) - which is that Colon Cancer <i>could</i> be totally eliminated as a cause of death, if we used screening via colonoscopy optimally.<p>As in, play a thought experiment:<p>* First, imagine everyone in the world gets a colonoscopy every day --&gt; obviously, all cancers would be picked up, but this is infeasible for some reasons (e.g. cost, economic impact) and suboptimal for others (e.g. iatrogenic harm, human cost).<p>* So, using data, apply colonoscopies more sparingly, based on risk factors such as age, genetics, family history --&gt; <i>if this is done right</i> you&#x27;d be able to pick up every colon cancer in its very early stages, either at a pre-cancerous stage, or an entirely curable stage.

Colonoscopies come with potential for complications.<p>There are actually a number of companies which have either released or plan to release non-invasive colorectal cancer screening based on blood dna sequencing.<p>GRAIL, Freenome, and Guardant all have tests out or coming down the pipeline.

&gt;3. It’s irresponsible to call colonoscopies “invasive” (as CNN did) since that might make people think they are unpleasant and not do them.<p>They are invasive, they are also unpleasant. It isn’t irresponsible to say those things it’s just true.

I have a friend that avoided it for most of his life.<p>When he finally got one (in his late fifties), it showed stage IV colorectal cancer.<p>He went through seven months of channeling Uncle Fester, but seems almost completely back to normal, now.<p>He is much more into taking care of himself, these days.

Article doesn&#x27;t actually answer the question? Certainly interesting information about the topic and efficacy, but it doesn&#x27;t really explain how the current situation came about.<p>Why is my neighbor driving around on a donut? I could write 3000 words on the history of tires, the assorted trade offs of trunk storage vs spare diameter, the geographical distribution of potholes, etc., but none of that explains why the donut is there.

I see several personal accounts and I could also share mine but given that colonoscopies &quot;rarely — but not that rarely — have serious side effects&quot; and that there was only an overall 1% difference of all cause mortality between the groups in the trial, is it worth risking the side effects if you are healthy and don&#x27;t have any symptoms?

I have a genetic predisposition for colon cancer, and have had nine colonoscopies: one every one–two years. As others have said: if your colon is otherwise healthy, it is safe and the worst part is the prep.<p>However, the last time 10 months ago, my body&#x27;s immune system was stressed by another cancer, and so a tumour developed in only nine months. Because of the risk of more colon cancer during the treatment of the other cancer, the doctors removed my colon, despite it otherwise being &quot;strong, young and healthy&quot;. I now poop fluids in a bag glued to my belly: it is better than being dead, but something you&#x27;d definitely want to avoid.<p>I actually miss colonoscopies now. I always watched the screens: it was beautiful and fascinating.

In Denmark, when you turn 50 you start sending in a stool sample every other year. If it works, I think I like that model better.

My brother had stage 3b colon cancer caught by a colonoscopy. He was treated and is still alive, so… that seems pretty good to me.<p>My company health plan recently announced that starting next year you can get a free Colonoscopy every year.

It&#x27;s interesting that the harm of the prep is not discussed. Not eating for one or two days and cleaning out your gut entirely with laxatives is bound to have consequences. Maybe this affects the gut microbiome?<p>At the very least, this triggers days of migraine in myself. Just skipping one meal does that, skipping several and ingesting awful laxatives results in feeling awful for days.<p>When you&#x27;re dealing with such vast quantities of people, these effects might add up.

Here&#x27;s another me too. When I turned 55 my GP started to nag me to get a colonoscopy, and my wife too. But in the small western town that we lived, there&#x27;s only a very small number of specialists and for 1.5 years &quot;they&quot; kept accusing us of not submitting the paper work. (We did, each time). It all sounded unpleasant and I was riding fast times in centuries so how bad could it be? Finally the GP needed a colonoscopy and the specialists did to her what they did to us and she got pissed off and forced the issue. And her nagging was effective and got us through the procedure. My wife was fine. I was Stage IIa. I did not get the IIa diagnosis until after 10+ weeks, including 4 weeks after the 18&quot; resection. Only thing anyone would say is &quot;your diagnosis is unknown, could be Stage 4&quot;. Which, you know, kinda sucks, and I can tell you it might suck harder for your life partner, than yourself. You&#x27;ll be gone, and they go on alone.<p>So I get (used to get) colonoscopies every six months and the very good surgeon down in Phoenix chops out the polyps. Weirdly he can fit me in on a couple of weeks notice. But COVID fucked all that up. And then we moved across the country. So now I&#x27;m starting all over with the fact that we can&#x27;t find anyone local to do the colonoscopies. But it MUST GET DONE. (Reminding myself).<p>So yes indeed it&#x27;s annoying but if you&#x27;ve got cramps or occasional blood in the stool or are over 55 and never had one do not avoid the colonoscopy. Everyone who loves you will appreciate it.<p>BTW I started riding centuries again about six months later and the next year I set my life record in the Tour de Tuscon. I tell people the resection was my weight loss plan. I get weird looks. I enjoy it.

I was very, very worried about mine earlier this year.<p>It was 100% a nonevent. My doc&#x27;s prep regime was fairly mild (basically, a jug of gatorade with a whole jar of miralax in it at 6pm, and then another at 1am, for an 0800 call). I had no cramping or bloating to speak of. I didn&#x27;t sleep in the bed with my wife after the 1am dose, mostly b&#x2F;c I didn&#x27;t want to disturb her by getting up over and over, but also slightly b&#x2F;c I was a LITTLE afraid of not making it to the loo in time. This fear proved completely unfounded.<p>The &quot;worst&quot; part for me really ended up being that I (wisely) did NOT go cycling on the Sunday before, since I know that ramps up my metabolism and leaves me very hungry the day after. I missed my ride, but it made the clear-diet Monday much more tolerable.

I had to fight with my doctors as a late 20-something to get one. Polyps, the Doctor who performed it told me he was proud of me for being persistent and made it clear that colon cancer is not an old man’s disease anymore.<p>I knew this because my brothers best friend died at 30 from it.

Nevermind the prep, the embarrassment, and the physical discomfort.<p>It was totally worth it because I got to watch it live on a big screen TV!<p>I had a heart catheterization recently. No prep, no embarassment, and only a bit painful where it went in at the wrist and bent at my elbow.<p>Also super cool to watch!

When a friend of mine had one he told the staff &quot;too bad I&#x27;m not gay or I would have enjoyed this&quot;.<p>Which made me wonder if any research had been done on how many times per day doctors and nurses administering colonoscopies have to hear this line.

I had an abdominal MRI done a few years ago to look for intestinal issues, and was surprised at the resolution. Ever since I&#x27;ve wondered why we don&#x27;t just do that regularly to see if there&#x27;s anything that looks worrisome, before going through such an invasive process as a colonoscopy.<p>Actually, I just looked it up. Apparently it&#x27;s a thing and called &quot;virtual colonoscopy&quot; [1]. Seems like the future to me.<p>1. <a href="https:&#x2F;&#x2F;www.mayoclinic.org&#x2F;tests-procedures&#x2F;virtual-colonoscopy&#x2F;about&#x2F;pac-20385156" rel="nofollow noreferrer">https:&#x2F;&#x2F;www.mayoclinic.org&#x2F;tests-procedures&#x2F;virtual-colonosc...</a>

A family member was going to get screened, and the insurer would only pay for a sigmoidoscopy since there were no indications of any issues. He paid for the full deal, and they found cancer they would not have found otherwise. He paid because a coworker had died due to undetected cancer - undetected because they didn&#x27;t do the whole colon.<p>A paper may talk about percentages, but that doesn&#x27;t represent you - it represents what an insurer or provider might find interesting to lower costs. You either have cancer or you don&#x27;t. If you want to find out, you need to check.

I just got one two days ago because my family has a history of it. Other than having to go on a no fiber diet and ingesting specific sets of salts to empty the bowel for the procedure, it was pretty in and out, and no pain at all afterwords (probably because they didn&#x27;t find any polyps). I went home with neat pictures of my clean colon.<p>Also lost 10 lbs in the past week but already seemed to have gained back a little in the past two days from eating normally again.

I have no first hand knowledge of this but I&#x27;ve heard that colonoscopies are very common in S. Korea, even starting at younger ages.<p>Can anybody comment on this?

So here&#x27;s my story...<p>Age 39. Presented to family GP with rectal bleeding. He did no exam, pretty much dismissed it as a hemorrhoid. Age 40. Complained again to GP that bleeding was continuing (sporadically). GP finally decides to refer me to the local thoracic surgeon. This surgeon gives me a go over with an anoscope and schedules a colonoscopy the next day. Turns out I had a 5cm tumor...<p>I was married with two very small kids. Not the best time to get cancer.<p>A week later I&#x27;m starting radiation therapy to try and shrink the tumor. A week or so after that (things tend to blur when medicine moves fast), I&#x27;m started on chemotherapy treatments. I start to lose weight (I was 6&#x27;2&quot;&#x2F;240lb at the start of this). I get a portacath above my heart so chemo drugs can go straight into a big vein. I carry a pump around to push my chemo drugs in on a reliable schedule. This combined treatment goes on for a month before I go through surgery. I&#x27;m experiencing neuropathy from the oxaliplatin, which makes your extremities very sensitive to the cold (and of course I live where you have real winters). Foods taste <i>wrong</i> too.<p>Go in for surgery and come out with an ostomy. The surgeon had tried to save enough stuff so I didn&#x27;t need a bag, but well, sometimes biology has other ideas. The tumor was too large and too close to all the rectal muscles. At least the surgeon said there were good margins, and no signs of metastasizing. So now I have a bag. At this point I way about 160lbs. Nothing tastes good except candy, and the docs are worried about my weight loss. So I get the green light to eat as much candy as I want.<p>Now I&#x27;m alive, with a bag, but alive. I&#x27;m taking some experimental oral post-surgical chemo pill 4x daily to try and kill any little bastard tumor cells that might have been released. These suck. Chemo is always a race to kill cancer cells before the chemo drugs kill you. My oncologist is always checking white cell counts, but now has some DNA test that looks for tumor markers. This is pretty cool. My cell counts improve and the tumor market analysis looks good. So I&#x27;m eventually sent home. On my way out of my last meeting with my oncologist and his nurse, I ask him how often he gets to send someone home in my situation. The look in his eyes made it apparent how tough a job these folks have.<p>So now 18 years later, I&#x27;ve been able to run a full marathon, finish my basement by myself, build the coolest shed in my back yard. Settle into a good IT career at a company where I can retire. And most importantly, be there when my kids graduated from school. Be there for my wife when her dad passed away from cancer. Just be there...<p>So if a colonoscopy scares you, as they say in The Wire; ain&#x27;t no thing. Don&#x27;t be like Farrah Fawcett who died of anal cancer because she avoided treatment. 150K new cases of colorectal cancer are diagnosed annually in the US. And if discovered early, it can be treated far less invasively and less life-altering than if found later.

Here a colonoscopy is adviced by my doctor for anyone aged 50.<p>She told me the free screening kits for bowel cancer the government sends out is mostly an awareness campaign as those tests are extremely unreliable.

&gt; When setting recommendations, the U.S. Preventative Service Task Force explicitly does not consider costs.<p>This is a great summary of the difference between US and European preventive medicine.

Can we stop referring to Europe as &quot;the rest of the world&quot;?

What about swallowing a pill camera? Could these be a slightly less invasive way to screen your colon? The technology for pill cameras along with AI should keep improving.

You mean I get scoped every few years and it’s not even a thing??!

Today there are ColoFIT and Cologuard tests, which have high precision and are less invasive.

I&#x27;m still flabbergasted that anyone in the face of the planet even considers doing a colonoscopy without sedation.

This is about people between 55 and 64 years old at the start of the study.<p>After 10 years:<p>The risk of getting colorectal cancer is about 1%.<p>The risk of dying because of colorectal cancer is about 0.3%.<p>Getting an invitation the study does not change much. Actually getting a colonoscopy helps more (37% reduction in getting the cancer, no data for dying).

Just stopped eating three days before. Forget the drugs and liquids.<p>Took no anesthetic for the procedure. Not really bad; just embarrassing, get over yourself.<p>Drove myself home ten minutes after. No problems.<p>Have to be good with fasting. Mostly it&#x27;s a matter of habit, remembering not to graze in the evening. I don&#x27;t feel hunger as a big deal; your mileage may vary.

- In assessing risks vs. benefits, it isn&#x27;t sufficient to use a single figure (e.g. 5-year relative survival rate). It&#x27;s not binary. Screening which detects potential cancer does not just prevent <i>death</i>. It prevents the suffering and disability which may accompany late-stage detection (even if you&#x27;re still alive after 5 years). Early detection could have prevented the two surgeries and rounds of chemo a friend of mine went through. Or the death of another friend after 3 rounds of surgery and 2 rounds of chemo. It could prevent living the rest of your life without normal bowel function.<p>Figures can&#x27;t capture individual assessment of risk&#x2F;benefit. Many of us buy insurance of various kinds even though the insurance companies have done some figures and expect to make money - in fact, they count on us valuing certain things above what is indicated by the raw numbers.<p>- The NordICC study [0] is cited by some as showing modest benefits from colonoscopies. It looks pretty good, but there&#x27;s something I don&#x27;t understand. They say: &quot;Follow-up data were available for 84,585 participants in Poland, Norway, and Sweden — 28,220 in the invited group, 11,843 of whom (42.0%) underwent screening, and 56,365 in the usual-care group. A total of 15 participants had major bleeding after polyp removal. No perforations or screening-related deaths occurred within 30 days after colonoscopy.&quot; Given the number of screenings, I don&#x27;t see how there could be <i>no perforations</i>. For example, the USPTF study [1] (see their &quot;Supporting evidence&quot; link) reports 5.4 perforations per 10,000 colonoscopies from colonoscopy to follow-up positive screening results and 3.1 perforations per 10,000 colonoscopies from screening colonoscopy. <i>No perforations</i> seems unrealistically low - maybe someone can explain this.<p>- Discomfort from the prep or procedure depend on the individual, and I don&#x27;t think one can usefully generalize. I&#x27;ve had 4 colonoscopies, the first two with sedation and the last two without. I had 3 polyps removed the first time, none during the second, 2 polyps removed during the third, and none during the fourth. The advantages of no sedation are that I don&#x27;t feel groggy afterward, and I can drive myself to and from. The procedures without sedation felt no worse than a bad case of gas (not surprisingly!). I watched the polyp removal during the third colonoscopy and didn&#x27;t feel anything above the ambient gas pain. But some people might find the procedure very painful, or might get queasy watching. Everyone&#x27;s different. And if you start without sedation and decide you want to stop in the middle, they might abandon the procedure and require you to come back again (in which case insurance is unlikely to pick up the second try). If you have one of these done with sedation, you might find it interesting to look at the itemized insurance docs and see how much they charged for the sedation (often done by an outfit independent from the GI practice). As for prep, the miralax with Gatorade is much better than the old stuff (which is damning with faint praise).<p>[0] <a href="https:&#x2F;&#x2F;www.nejm.org&#x2F;doi&#x2F;full&#x2F;10.1056&#x2F;NEJMoa2208375" rel="nofollow noreferrer">https:&#x2F;&#x2F;www.nejm.org&#x2F;doi&#x2F;full&#x2F;10.1056&#x2F;NEJMoa2208375</a> [1] <a href="https:&#x2F;&#x2F;www.uspreventiveservicestaskforce.org&#x2F;uspstf&#x2F;recommendation&#x2F;colorectal-cancer-screening" rel="nofollow noreferrer">https:&#x2F;&#x2F;www.uspreventiveservicestaskforce.org&#x2F;uspstf&#x2F;recomme...</a>

Because it was colon-ized?

The sad thing about the article is that skirts around mentioning the possibility that the American disease industry hates this trial because it will reduce their income.<p>The good thing about the article is that it has a colonoscopy joke that also involves (bonus for the HN crowd) Bayesians.