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My 65 year old male neighbor has a positive "cologuard"

MarinMark
Posts: 148
Joined: Aug 2011

My 65 year old neighbor said he has had colonscopy every five years since age 50.  On a website he read his insurance will pay for a cologuard test, but he doesn't know anyone who has had it done.  A cousin who is a physician ordered it for him, and he sent away for a kit with has a tub abd brush and liquid and he sent his feces to a lab.  Four weeks later he was told this cologuard test was positive.  Last colonscopy was five or six years ago.   He went to a GI doc who told him not to worry but to just get his colon examined every 5 to 10 years.  This GI doc never orders this cologuard test and doesn't know of a local doc who does.  

 

Anyone here had this cologuard test done and it was positive and the colonoscopy was normal?  Or anyone here had a positive cologuard test and a newly discovered tumor was found on colonoscopy?  If your cologuard test was normal was something significant still found?

 

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

This test does 2 things...it tests for minute traces of blood which might indicate a problem and it also tests for genetic material which is shed from turmors.  The older and cheaper test only tests for the presence of blood in the stool.

The article said that if a positive is found, then a colonoscopy should be done.  It is apparently more accurate than the old test for positive results, but less so for negative results.

One of the best things about this test is that more folks may be inclinded to do it over having a colonoscopy because it does not require the prep and the procedure.  It can be done in the home.  It could also be done for those "at risk" between scheduled colonoscopies, to keep a closer watch.

It was approved in August 2014 by the FDA and costs about $600.  That your neighbor's insurance covers it is great. 

Regardless of the out of pocket cost, it might get more early detection for those who shy away from the colonoscopy.

If it gets more folks to be checked, that is a good thing.

Marie who loves kitties

 

Salliesmom33
Posts: 1
Joined: May 2019

I am scared to death. I was told to have a colonoscopy immediately. Should I be panicking?? Or is there a chance that a positive test might be only something small like a blessing hemroid?

PennyD2911
Posts: 2
Joined: May 2019

I too just received the phone call that my test results from the Cologuard test are positive.  I was NOT expecting this! I did it because the MA at my doctors office ask me to, since I am 58 and have never had a colonoscopy. As far as I can tell I don’t have any issues that would cause the test to come back positive. The only thing that comes to mind is occasional hemroids and intermittent bouts of constipation. Even those don’t happen frequently.  I have severe issue with anxiety and panic attacks, and this has me really scared.  Anyone had positive Cologuard results and nothing found when the colonoscopy was done?

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

There seem to be allot of people who have false positive results, and then there are folks who are diagnosed. 

When did you have your last colonoscopy? If the answer is never, I would highly suggest that you go ahead and get one, because at the end of the day, it will ease your mind. 

I had no real symptoms of the Stage IV Cancer that I was diagnosed with, so you can't bank on how well you feel, or the fact that you don't exhibit any of the known problems assosiated wtih a CRC diagnosis. 

So, my advice, if you haven't had a colonoscopy in several years, get one now, and fingers crossed your Cologuard was one of the many false positives. 

Tru

PennyD2911
Posts: 2
Joined: May 2019

Tru, I’m not sure if your reply is to me, but just in case :) I wanted to say I am definitely getting a colonoscopy. I always want to know if there is something going on in my body and I want to get it checked out.  I’m just praying I am one of the false positive Cologuard results. 

BillO60
Posts: 72
Joined: Mar 2015

From the material I've read on PubMed and the National Cancer Institute site, although the test is relatively new (although research into testing fecal DNA has been going on for at least a decade) the test is not a replacement for colonoscopy but, like the fecal immunochemial test (FIT) that test for blood in the feces, it's one more screening test that might help detect colon cancer in its early stage. Where the FIT test checks for blood in feces the fecal DNA testing (in this case Cologuard) checks for blood as well as abnormal DNA that may indicate cancer.

Research is still ongoing but Cologuard screening is covered by Medicare, Mayo Clinic began offering it to its patients in August 2014, the same month the FDA approved  Cologuard, and even the VA has been involved in some early testing.

Something I found interesting related to what you'd asked was a note on the NCI site that indicated in one study published in 2004 by the New England Journal of Medicine, for people who were at average risk of developing colon cancer, but who had no symptoms, fecal DNA testing was better at detecting cancer than the standard FIT test that checks only for blood.

On the flip side, the study also found that testing for abnormal DNA in the stool was more likely to have more false-positive results than the FIT. How much more likely false-positive's crop up wasn't indicated and 10 years later it would be surprising if the developers hadn't been working to fine-tune and reduce that risk. 

Hope that helps. I'm sure your neighbor is concerned and I certainly hope it was a false-positive but he'll obviously need to see his doctor to work out further testing he'll need to find out for sure.

 

Bill

 

MarinMark
Posts: 148
Joined: Aug 2011

All excellent posts.  His matter is more interesting since he does not have a family history of colon cancer and he had three normal colonoscopies (every 5-6 years) during the past 15 years.  This is far more than any of my friends have had!  So his last colonoscopy as just 6 years ago and was normal.

 

None of my docs recommend the test stating that if a person is concerned, get a colonoscopy every 5-10 years instead.   Wonder if this test is predictive, that is if a person has a negative colonoscopy and a positive cologuard, will they very likely develop a colon cancer?

 

"tests for genetic material which is shed from tumors"----  if true, what is the cause of a false positive test ?  The test seems to have too many false positives and false negatives.

 

Anyone know the true rate of false positives with Cologuard in a 60 year old male ?

 

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

Statistics are not good to go by. 

You say he hasn't had a colonoscopy in 6 years and had a positive result on this test.

My vote would be time for another check up.

Better to get a good result from the colonoscopy than to let something go that could be serious.

Marie who loves kitties

MarinMark
Posts: 148
Joined: Aug 2011

Tonight he showed me his report with color pioctures.   Despite the POSITIVE Cologuard test, his full colonoscopy was normal.   Why was his Cologuard test positive?  What does this mean for his future?

Easyflip's picture
Easyflip
Posts: 588
Joined: May 2013

cologuard and stick with colonoscopies. If this screening were perfected no one would go through the hassle of a colonoscopy. False positives happen all the time in medical testing. He's ruled out the big scary deadly elephant in the room so I wouldn't be ultra concerned. Ask the Doc or the company that makes it why there are false positives. I don't think it means anything for his future except to get colonoscopies at the recommended times.  Just be thankful he doesn't have cancer! Good luck!

Easyflip/Richard

MarinMark
Posts: 148
Joined: Aug 2011

http://www.bostonglobe.com/business/2014/03/24/fda-reviews-dna-based-colon-cancer-screening-kits/9ihuSUBHhQGv6dUlm93ZcO/story.html

 

http://health.usnews.com/health-news/patient-advice/articles/2015/02/03/meet-cologuard-the-colon-cancer-test-you-can-take-at-home

 

http://www.latimes.com/business/la-fi-lazarus-20140822-column.html

MarinMark
Posts: 148
Joined: Aug 2011

Does this mean that 76.4% of the positive Cologuard tests are false positives ?

"Of the positive test results, the numbers that would be viewed as false positives would be 1230 of 1611 (76.4%) with DNA testing (COLOGUARD) and 468 of 696 (67.2%) with FIT."

 

Taken from:  http://www.nejm.org/doi/full/10.1056/NEJMoa1311194#t=articleDiscussion

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

The second article you sited (nejm.org) is a year older than the one you sited  from usnew.com.

I personally would take a false positive or a false negative any day.

Apparently some insurance companies are convinced that is accurate enough for them to pay for.

MarinMark
Posts: 148
Joined: Aug 2011

You would like a false negative Colon test ???  Makes no sense.

Why does Medicare and some other insurances cover this $600 test ?  What good is this Cologuard test ?   If it can miss cancers or pre-cancers, that's not good.   If it gives false positives, that's not good.

I went for my colonoscopy yesterday.  No drugs, no meds, no pain.  Easy 10 minutes procedure and fun to watch on the screen.  Completely normal. 

My prep was different from what others have done, and was fairly easy.  If someone said I must repeat colonoscopy in a week, no problem.  Plan on another one in four years.

 

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

Should have read "false positive over a false negative".

There is no test that is 100% accurate.  Even PET and CT scans and colonoscopies have been known to miss things.

Each person has to make their own choice as to what to do.

Glad to hear that your test was good and you had easy time with the prep.  Everyone should be so lucky.

Marie who loves kitties

bruce1949
Posts: 1
Joined: Sep 2015

I would never recommend Cologuard to anyone.  I just used Cologuard, and got a positive result.  Based on this result, I went through 2 weeks of no aspirin or NSAIDs (I have joint pain and headaches) 24 hours of no eating (severe headache most of the day), a $100 laxative and $1,200 colonoscopy in addition to the $600 Cologuard test.  They found nothing.  I know, be happy they found nothing, not even a polyp, but what a waste of $600.  Since having the colonoscopy I have learned that in the Cologuard test, 0.6% of test subjects had cancer or precancerous polyps.  0.6%!  That means 99.4% of test subjects had no cancer!  148,000 new cases of CRC sounds like a lot of people.  That's .04% chance for all ages, and I read that 4% of people between 60 and 80 develop CRC.  If you feel the need to be tested for CRC do it, but go ahead and have the colonoscopy.  Forget Cologuard, it's a rip-off.  The CDC list CRC as the second leading cause of cancer-related deaths.  Sounds really scary, second leading cause.  They never tell you you have a .04% chance of getting it.  

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

I'm glad you are free from the curse of CRC, but sorry you had to find out in such an expensive way. 

Thank you for all of the information provided. 

And welcome, even if we never see you post again.

Trubrit

mel1950
Posts: 3
Joined: Dec 2016

I just took a cologuard test and it came back positive.  I'm so nervous I'm going for a colonscopy on thursday.  I have a twested colon that is why I never had one.  I can't seem to think any more my nerves are shot.

mel1950
Posts: 3
Joined: Dec 2016

You are 100% right I had one and it also came back positive.  I thought I would die.  Had a colonscopy and thank God it was normal would never recommend it to anyone.

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

So glad to hear that your test is also negative for Cancer.  May you forever have good results from your Colonoscopies.

TRU

BL53931
Posts: 9
Joined: Nov 2016

I posted a new thread before seeing this one. Won't repeat what I just posted but had a Cologuard positive after years of negs using the blood test. I asked my new Doctor if she'd let me take a blood test as a back up since I cannot get in for a Colonscopy for 60 days. She argued with me and relunctantly offered that other test. If I get a neg on that one I may change doctos and see how that goes.  Any comments? 

DataDrivenFP
Posts: 1
Joined: Nov 2016

The short answer is, get the colonoscopy in two or three months (there's no rush- anytime in the next 3-6 months is ok, though sooner is better) because the screening test shows you're much more likely than the average person to have something significant.  A full answer involves a statistics lesson.

No test is perfect.  A perfect test would always give positive results when disease is present, and negative when absent. Unfortunately, no test is perfect, so we choose them to minimize important mistakes.  Think of using a dying flashlight to look for a black cat in a dark coal cellar.  You may see the cat if it's there, and you might get an illusion as the light dies. How useful the test is depends on how likely the disease is to start with. 

We should only screen when a disease:

  1. is fairly common
  2. is very serious
  3. has a long period when there are no symptoms, but the disease can be detected
  4. has safe and effective early treatment AND the screening test is:
  5. safe
  6. cheap and
  7. reasonably accurate

The goal is to improve your health a little bit by getting the test.  These are hard requirements to meet-MOST disease screenings fail, or have very little value. Screening for prostate cancer makes you (just a little) MORE likely over all to die (from complications of treatment) than your risk going in from prostate cancer.

Colon cancer screening has a small benefit, overall, one of the few that does.

A screening test, like FIT or cologuard, should be most reliable when it's negative, so we don't miss true disease very often.  A positive screening test for a rare disease will give more false positives than true, but that's ok, since we're only testing for important diseases we'd rather not miss. A positive screening test leads to more evaluation.  Cologuard's not so good because it's so expensive, about half the cost of a much better test, colonoscopy.  

A confirmation test, like colonoscopy, should be most reliable when it's positive, so we don't take out healthy colons, and unnecessarily expose people to the risks of surgery.  Colonoscopy has about a 5% false negative rate. Much much smaller false positive rate.

For people 50-70 in the US,  about 1 in 300 has a cancer or a polyp, and doesn't know it.  We all have the symptoms of early colon cancer (=NO symptoms.) We want a screening strategy (not a test) to find most of them.   So using FIT every year, or colonoscopy every 10 years, is an ok screening strategy, because the chances of a false negative go down with repeat testing.

*********************************************

So for your situation, before the Cologuard you had a 1 in 300 chance of something you'd want to know about.  Now the odds are 1 in 3! (About 5x more likely to be a potential precancer than an early cancer; about 10x more likely to be early cancer than late.)

You need colonoscopy, because any other negative test won't tell you reliably enough you DON'T have something you'd want to know about. If you get a positive 'blood test' (there is no good blood test for colon cancer, BTW) you still need a colonoscopy; if you get a negative 'blood test' you still need a colonoscopy!  About 60% of the time, they'll find nothing; about 35%, a polyp; about 4%, a very early cancer; about 1% a less early cancer.  Get the colonoscopy!

 

 

 

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Re:
"You need colonoscopy, because any other negative test won't tell you reliably enough you DON'T have something you'd want to know about. If you get a positive 'blood test' (there is no good blood test for colon cancer, BTW) you still need a colonoscopy; if you get a negative 'blood test' you still need a colonoscopy! About 60% of the time, they'll find nothing; about 35%, a polyp; about 4%, a very early cancer; about 1% a less early cancer. Get the colonoscopy!"

Well worth repeating, and as many times as we can!

There's too, too much fear associated with a diagnosis of cancer, and it's that fear drives some individuals to do things as a "precaution", never realizing that some "preventive" measures and tests can lead into directions better off not taken. Your mention of "prostate cancer" is a perfect example!

I'd like to thank you for one of the best informative posts I've read in quite awhile (in my not ever humble opinion)......

Welcome!

My best wishes,

John

 

Byrdi
Posts: 1
Joined: May 2017

I came up with a positive Cologuard, and after doing a colonoscopy I have a perfectly normal colon.  I just think this is a huge waste of someone's money to bother with. Have your neighbor do a regular colononoscopy. My guess is he's fine. If you read closely the rates of false positives are very high.  It's probably a way to scare people into getting the required colonoscopy tests.

wellspouse
Posts: 1
Joined: Sep 2017

I got a positive Cologuard test several months ago, after 14 years since my first normal colonoscopy.  I had no symptoms other than hemorrhoids which I think skewed the test and doctors had been nagging me to get another colonoscopy.  Finally got it today and it is perfectly normal.  I appreciate the comments here so much because I would keep reading them over the months between the positive test and the procedure today, hoping I would be one of the false positives also.  The GI doctor had told me that he did 70 colonoscopies in the past year from positive Cologuards, and none had cancer!  So hoping this can give some hope to others down the road whose Cologuards come back positive.

dpoz's picture
dpoz
Posts: 2
Joined: Feb 2018

Your post makes me feel a bit better.

Lisa S
Posts: 2
Joined: Apr 2018

Thanks for sharing that!  It makes me feel a little better about my current situation with a positive cologuard result.  I'm feeling a little rattled right now because of this situation.

rrs0159
Posts: 1
Joined: Oct 2017

My husband just had a cologuard test done with his annual wellness checkup.  The false positive of the cologuard test sent him for a colonoscopy which he was not due for as a matter of wellness exams go.  We are thankful for the fact that he does not have cancer, but the order of things for insurance did not go well.  Our catastrophic insurance covers the cologuard test under wellness, but the colonoscopy went all to decuctible because the cologuard test was the screening test and the colonscopy now became the diagnositc test!  My very humble opinion...skip the cologuard test and do your colonoscopy when your wellness schedule allows it.  Just a heads up for people who don't have a bunch of extra money they want to pay for a test they don't need....

 

Oh, and my sister-in-law also had a false positive cologuard test which in turn sent her for an unneeded colonoscopy.

 

heidie
Posts: 4
Joined: Oct 2017

I posted a while back about my positive cologuard test which was upsetting and had me worried. I had my colonoscopy today and all is well except for a polyp. I will get final results in a few days but Dr. says not to worry and everything looked good. His words:" The cologuard test is junk"

Well from now on I will be getting colonoscopies and skip the $650 test

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

I am very happy to hear your news, heidie.  May you never have to worry like that again. And yes, stick with the 10 year colonoscopies. 

Tru

kaybee64
Posts: 1
Joined: Apr 2018

Unfortunately, I had the same experience as someone else on this site.  My doc recommended the cologuard test. I did it and results came back positive whic of course was very scary.  I then had a colonscopy and not a thing was found, No polyps - nothing whatsoever wrong! Well then my insurance company denied the payment for the cologuard test and said it was not covered, so I owed over $600.  Then, my insurance company said since I did the cologuard test and it came back positive, they considered the colonscopy as DIAGNOSTIC rather than a SCREENING and so it was not fully covered and they would only pay 80% AFTER BY HIGH Dedeuctible was met!!  If it was just considered a routine screening, it would have bee totally covered.  So I owe a total of over $4000 for a colonscopy that was totally free of any problems. And this was all the result of a false positive Cologuard test.  So, my advise is don't do the cologuard test at all and just go get your routine colonoscopy when needed.  I've totally learned my lesson!  Never again will I do this test!!  

Lisa S
Posts: 2
Joined: Apr 2018

I will never do this again either.  Not worth the worry when you get a positive result.  Just get a colonoscopy.

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

Try to fight the insurance if you can. 

Tru

Annabelle41415's picture
Annabelle41415
Posts: 6184
Joined: Feb 2009

You need to fight this insurance company.  First off you need to get a hold of the doctor's office that ordered this.  They can rewrite the first test and then the colonoscopy due to the fact that you had a positive result and the insurance should cover both.  Don't let this slide.  I've had to deal with insurance on a particular issue and went round and round with them and finally was able to get them to pay for a surgery that was needed.  They will try and not pay, but don't let them win.  Hope you get this resolved.

Kim

Mia33496
Posts: 1
Joined: Jul 2018

Totally agree and sorry you had to go through all that. I had a positive Cologuard and had to wait five weeks for the colonoscopy, which showed nothing wrong, thank goodness. I would not recommend the Cologuard test - created unnecessary anxiety, and the colonoscope was really no problem. I did not even need to miss work - i was home three hours after leaving and was able to work from home. Lesson learned - don’t try to get off easy - do the gold standard test. 

Summer91
Posts: 11
Joined: May 2019

Hi!  So glad I found this discussion board.  I have IBS and while it has been under control for several years, I had a return of symptoms over the past few months - bloating, occassional cramping, sometimes diarrhea and sometimes constipation - typical IBS.  My primary care doctor suggested the Stanford FODMAP diet, which is basically gluten-free, lactose-free, low sugar, low fiber.  Trust me, the list of foods you cannot eat is much longer than the list of foods you can eat!  If I adhere strictly to this diet, the IBS symtoms go away.

Before I saw the doctor, I also ordered a FIT test from Letsgetchecked.com.  The results of that test arrived after I saw my doctor and were negative.  The doctor wanted me to take the Cologuard test, so I did so.  That came back positive!  From the papers I have read, Cologuard has a false postive rate of 13% and FIT has a false positive rate of 5%.  So, now I have to get a colonoscopy for piece of mind and I have to find a provider who has experience doing this exam, sedation-free (I cannot metabolize any sedative well).  sigh  

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Hello, plesse start your own thread or this post will likely get lost. I had IBS as long as I can remember. Because of it the symptoms were masked. Blood in the stool? Yup. Other symptoms, yup! Blood in the stool can be caused by a number of things. If I were you I'd get a colonoscopy because if you have polyps they take them out right then and there. They can become cancerous so you don't want them to stick around. A colonoscopy isn't as bad or as humiliating as people imagine. You just lie on your side and it's very quick. It's a lot better than having cancer. I wish I could the me years ago this. I was so scared of having one. It would have been much better and less invasive than the cancer.

Jan

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