Talk To Me About Colon Cancer (don't need answer fast)

In My Humble Opinion
21

Yeah, sucks when your doctor is attempting to, yanno, look out for your health. “I strongly recommend that you quit smoking, Mr. Jones!” “You’re fired”.

@HeyHomie, I am really sorry you feel it’s such a scam. I truly believe that the recommendations are driven by a growing body of experience showing that, on the whole, such screening saves lives.

They’re not perfect, of course. I know one fellow who died at just shy of 50 years old after a multi-year battle with it, and of course our own Maggie the Ocelot developed colon cancer well before age 50.

And lots of others go much later than age 50, before being screened, and don’t develop colon cancer.

My doctor was not pushy AT ALL on the topic. In fact my first one was an afterthought when a gastro wanted to do an upper GI endoscopy. It is not an exaggeration to say that this afterthought saved my life: at the time, the doc said “I wouldn’t have wanted you to go another five years before this got caught” - and that was 12 years ago.

So: are some colonoscopies unnecessary? Well, you might argue that any one that doesn’t turn anything up is unnecessary - but you don’t KNOW that until it’s been done.

The recommendations for screening are a) more varied than they used to be, and b) evolving. I think the latest recommendations, given that colon cancer diagnoses are becoming more common among younger people, is that SOME sort of screening begin at age 45. And the options include not just colonoscopy, but fecal blood testing and ColoGard. There are arguments for and against each of these; colonoscopy is expensive and not risk-free, but is the most accurate, but other testing is a hella lot easier (if somewhat less sensitive).

I gather your procedure has been accomplished, and did not turn up anything worrisome. Congrats: your chances of dying from colon cancer have gotten a lot lower, and future screening can be of the much less invasive variety.

But “scam”? This isn’t the pit, so I’ll just say I respectfully disagree.

22

One of the more famous cases:

Boseman died at his Los Angeles home as a result of complications related to colon cancer on August 28, 2020, with his wife and family by his side. He was 43 years old.

23

I may have missed it, but I didn’t see mentioned here that colonoscopy not only diagnoses colon cancer, it can also prevent it. My gastroenterologist told me that colon cancer is one of the most deadly forms of cancer, but it’s also one of the most preventable. And how it’s prevented is by colonoscopy.

A friend of mine had a colonoscopy because she got tired of her sisters bugging her to get one. The procedure found a growth that the pathologist said would have developed into full-blown colon cancer, probably in less than a year. She had surgery that removed some of her colon. She never developed colon cancer.

My husband is on “the five-year plan” because each of his colonoscopies found polyps. Interestingly, there was a question regarding insurance coverage of his second colonoscopy. Since the doc found and removed a couple of polyps, the procedure was considered therapeutic instead of diagnostic. If diagnostic, it would have been 100% covered.

24

Exactly!! That’s how it worked out for me, for sure: I had polyps of a sort that stood a decent chance of turning into cancer in a few years.

It’s why colonoscopy is still the gold standard in colorectal cancer screening. If you get a positive result on any of the alternatives, it’s time for the scope.

25

I’m thinking more about situations where:

“I strongly recommend you quit smoking!”

“Yes, I understand, but I’m not going to stop. Can we discuss alternatives. Is vaping better than smoking?”

“I said stop smoking, now stop!”

“You’re fired.”

26

Yes! Colon cancer can be dealt with quite successfully if caught in its early stages. Unfortunately, many have died who should have lived if they had only discovered the disease before it was too late.

27

Good point, and we don’t know what the tone was when @HeyHomie had this discussion with the doctor.

The doctor was absolutely right in pushing for SOME kind of colon screening; we don’t know if there was any discussion about options. I’m also of the opinion that a lot of doctors, when you DO have a scope, just automatically prescribe the massive nasty stuff by default / out of habit, and I strongly encourage people to challenge that (but if doc has a really good reason for that particular torture, it may be worth complying).

And in general, a doctor who won’t listen to a patient’s concerns / explain alternatives is one who SHOULD be fired, and a doctor who gets pissy when the patient asks questions should also be left behind - I’ve done that myself a few times.

tl/dr: my own “up yours with a rubber hose” was when my doc FINALLY sent me to a gastro for what appeared to be severely worsening reflux symptoms. I thought they were a side effect of a medication she’d put me on, as the timing was nearly exact - but she made a good point that the symptoms were more GERD-like than the medication’s usual effect. I spent several months going down that garden path, before I finally REFUSED to take the medication. Doc switched me, symptoms disappeared. But since I’d been referred to the gastro by then, and gastro wanted to do the upper GI, and I literally said “while we’re at it…”, and that little codicil saved my life, I’m torn between being pissed at the misdiagnosis, and un-pissed at the unexpected benefit.

28

She ordered a ColoGuard and it came back positive and she started discussing colonoscopy. I showed her the research that said that ColoGuard has like a 12 percent false positive rate (or something like, that, whatever it was, it was nontrivial). I also posited a very good reason why it came back positive (blood in the stool due to anal fissure). I asked for a second ColoGuard test. She wasn’t having it and insisted on a colonoscopy. I told her I’d buy one myself but a) $500, and b) the ColoGuard people don’t make it easy for consumers to order them off-the-shelf. And she kept insisting that I needed the colonoscopy.

29

I’ve heard that colonoscopy is the most effective of all the routine screening tests that are done. Mammograms and the prostate blood test are the two that are usually bright up as over-used.

My cite on “most cost effective” is from a friend who is usually accurate on that sort of thing, but he also has a family history of colon cancer. I’ll see if i can find a better reference.

But it’s true that if a colonoscopy finds polyps they can just snip them during the exam, and that prevents them from developing into cancer. That makes it a lot more useful than most screening tests, as it cures the problem before it becomes dangerous.

If i had a positive cologuard i would absolutely want a colonoscopy. But I’d also try had to avoid contaminating my sample with blood from hemorrhoids. But isn’t there some newer poop diagnostic that looks for precancerous cells, rather than just looking for blood?

30

That’s unfortunate. I don’t honestly know if blood in the stool is one of the things that triggers a false positive - and of course I don’t know what the “12% false positive” (or whatever the figure was), means in terms of TRUE positives. Does that mean “out of every 100 tests, 16 come back with positive, and 12 of those are false positives, so there are only 4 cases of actual cancer”?

Or does it mean that “out of every 100 positive tests, 12 are false positives and the other 88 are real cancer”? The first version is reassuring, the second version is scary enough that one would not want to ignore it.

I think the “standard” is that if ColoGard comes positive, a scope is officially indicated. I’m sorry that you weren’t able to negotiate a retry with your doc. But am I correct in assuming that the scope at least turned out “all clear”?

31

Answering my own question: " Nearly 66% of positive Cologuard tests are false positives." (from here). Looking at that website, it appears to be a medical practice, and seems to be pushing for avoiding ColoGuard entirely.

It’s a pity you weren’t counseled before you did the test, on not doing it when there was a chance of current active bleeding - some googling suggests that this might indeed skew the results. You wound up with unnecessary worry, wasted time, and wasted money (even if your insurance company didn’t quibble at paying for the procedure).

So: knowing more about YOUR situation, I’m sorry to hear that the doc wasn’t willing to work with you on retesting. There needs to be some flexibility here, doc!

In general though, it sounds like doc was following current guidelines, simply not customizing them as appropriate.

32

Cologuard is the newer poop diagnostic that looks for precancerous cells. It’s the older FIT test that only looked for blood.

33

Don’t know. I was pretty drugged up at the time, and Mrs. Homie was more concerned with getting the car started, but I think the nurse/tech said that there were a couple of polyps sent for further testing and I’d know within a week. That was last Friday (18th March) so I imagine I’ll know for certain with 48 hours.

34

If there were any polyps removed, the colonoscopy was worth it.

35

66% is absurdly high. That article claims CBS news as a source, but provides no link to follow up on.

A different page on that very same gastroconsa website says that Cologuard has a 13% false positive rate:

The Truth About Cologuard Tests: Doctors Are Warning Patients.

This is much more plausible, and is consistent with Cologuard’s own claims that 13 percent of cancer-negative patients receive a false positive diagnosis from the Cologuard test (see “what is the specificity of Cologuard?”):

36

If a false positive means you follow up the ColoGuard with a colonoscopy, I don’t see the problem. It’s the false negatives that would discourage me from relying on ColoGuard.

37

Imagine a 100% false positive rate - that is, every patient that does not have colon cancer receives a positive test result. In this scenario, the vast majority of positive Cologuard tests would be false positives (given the very low prevalence of colon cancer, only a very few positives would be true positives), and would be a waste of time and money, because every positive test has to be followed up with a colonoscopy; everybody would be better off just skipping Cologuard and going straight to the colonoscopy.

A 66% false positive rate is still a pretty big waste of time and money.

A 13% false positive rate is much more useful; in this scenario, relatively few people are wasting their time money by opting for a Cologuard test instead of going straight to the colonoscopy.

38

The bolded bit in what I quoted said “Nearly 66% of positive Cologuard tests are false positives.” That’s not the same thing as what you’re saying. It’s not saying that 66% of people who do not have colon cancer receive a positive test result.

39

I had a colonoscopy on January 28. They found and removed a 4 centimeter sessile polyp. Anything over 1 centimeter is considered large. Pathology report said it contained “focal high grade dysplasia”. In other words, precancerous. I am scheduled for another colonoscopy in three months to be sure they got it all, and it isn’t growing back.

I had no symptoms. Get your colonoscopy.

40

Both can be true.

If 6% of all people have cancer, and cologuard correctly labels all of those as positive, and also labels 13% of the people who don’t have cancer as positive (a 13% false positive rate) then if you test 100 people, there will typically be about 6 true positives and about 12 false positives among those 100 people. That’s the 6 people correctly diagnosed as having cancer, plus 13% of the 94 who don’t have cancer.

so there are 12 false positives and 6 true positives among those who test positive, or 66% of those who test positive don’t have cancer.

6% positive for at least a pre-cancerous condition that requires treatment among those who get cologuard doesn’t sound crazy low. (The lower the number, the more leverage there is.)

Honestly, doing a poop test is a LOT less invasive than having a colonoscopy, and probably a lot cheaper. If it has a low false NEGATIVE rate, it makes sense to start with cologuard, and only do a colonoscopy on those who test positive. Even knowing that 66% of them will have a normal colonoscopy.

Also, any polyps they found would have been removed. Because once you are in there, it is quick and cheap and safe to remove the polyps. And cancers start as polyps. If you remove them when they are small, then you are cured. (although if you have a tendency towards polyps, you might develop new ones in the future.) So if they removed a couple of polyps, it’s really good that you had the colonoscopy, and even if you get the all clear, there will be more colonoscopies in your future.