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Cologuard Positive

BL53931
Posts: 9
Joined: Nov 2016

I took one of the Cologuard at home tests. I had been seeing  an older family doctor who retired recently and went in for my annual checkup to his replacement, a young woman of about 30. I had been getting negatives on the fecal blood tests he'd been having me do. The new Doc really pushed the ColoGuard test so I had it done, came back positive. I believe this test produces a lot of false positives although I am not disregarding it. I currently have a Colonscopy scheduled but they cannot get me in until January. I have asked my new doctor if I can take another blood test just to see if I get a positive or not- it my at least give me some sense of peace sincce I have to wait so long.

New doc called back today, my wife and I argued with her several minutes, she reluctantly agreed to provide a fecal blood test kit which I will pick up today. At least I may know a bit more of what is going on. I never even got to see the report of the Cologuard test I took.

My old doc mentioned this new test last time but said he felt the blood test was just as good. We are dealing with a young doctor and I wonder if anyone else on here has had experience with this new test? My thinking now is if I get a negative on the blood test then a full colonoscopy can wait a bit.  Opinions? 

NewHere's picture
NewHere
Posts: 1066
Joined: Feb 2015

First, get your Cologuard report.  It is your report, and they should show it to you.  It may just say positive or negative, I do not know.  Get the kit and use it, no downside.  BUT ff you have any family history or over (or approaching) the age of 50, get the colonoscopy.  

You can go for an MRI first if you like first (keeping in mind radiation etc.), but colonscopy is better.  Even if you do not have a family history or are younger, the colonscopy is still something to consider.  Having a possible false negative and not taking action as compared to having your mind put at ease (or catching something for sure) may be worth it.  Colonoscopy prep is not a ton of fun, but worth it.  If I could go back in time and have a colonscopy done a year or two earlier, I would.  It is pretty low risk.

Lastly, you may want to find another doctor if you are arguing with them.  Their job is to guide and advise (sounds like it was heated with reluctance comment.)

Tucsonjj
Posts: 5
Joined: May 2019

True, one would think that Cologuard WOULD show you the results of the test... guess what... they DON'T!!  I had a positive result on my Cologuard, called them, asked for the detailed results to be sent to me OR my Doctor... they refused... I asked why, since they of course would have the results at their fingertips, right?  Still refused, said it was "standard procedure".  I then asked... at least tell me which of the two tests came back positive, or both... again they refused... now... why on earth would they refuse such a simple request?  I asked them to explain in detail the DNA portion of the test... another refusal.  I found elsewhere that even if you have a polyp, which is most often harmless, it will cause a Pos Cologuard DNA result.

One possibility is that the Cologuard is a Big Pharma/Big Physician/FDA SCAM, only to get as many people to do a BIG dollar colonoscopy as possible.  Colonoscopys are risky, period.  Check out Youtube  https://www.youtube.com/watch?v=woREV5D1DLQ watch all 3 parts.  Dr Bergman is also interesting on the subject.

BTW:  I ordered a FIT test off Ebay for $20, shortly after the Cologuard Pos result... took it and it came back NEGATIVE.  I plan on taking the FIT again every 6 months because of the Cologuard, but IMO, Cologuard and the company Exact Sciences are unethical and very possibly corrupt.

Trubrit's picture
Trubrit
Posts: 4756
Joined: Jan 2013

The Colonoscopy is definitely the test that needs to be done. Waiting until January is going to be hard, and maybe the other test will provide some peace of mind until that point.  I wonder if you are able to request a CEA blood test. They are also not conclusive. For some they were are a good indication others not. 

I wish you the best of luck, and hope you continue to visit the forum here for information and support. 

SUE

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

Get the colonoscopy either way. When they go in they'll remove any polyps so you really reduce you're chances of getting colon cancer in the future. My husband had it done about a year ago and he had two polyps that were precancerous.

I can't answer a question about the test because I didn't do either one. I always had blood in my stool because of having IBS for years. So I didn't bother. I realize now that if I'd have done the test and they'd have seen the blood they'd have got me in for the colonoscopy much sooner. I waited seven months to get in. I look back now and wish I'd done it. Hindsight is twenty-twenty, of course.

Good luck with everything.

Jan

kmygil
Posts: 881
Joined: Feb 2007

Find someone who can do the colonoscopy sooner.  Remember, you are not married to your doctor.  Do what you need to do for you.

Good luck, and keep us posted, please.

Kirsten

BL53931
Posts: 9
Joined: Nov 2016

I did get a copy of the Cologurd report. All it said was 'positive'. Nothing else at all. Nothing re blood, DNA or what. My inssurance paid for this? Incredible.

I now have the kit for the blood exam. Will run that test in the next day or so and see where that puts me. I did get a call from another disgnostic center my Doc referred me to and they offered to do the exam this coming Monday. I had to say no because I wanted to see how the blood test comes out. That is just too soon for me to deal with. They said to call back when I know more. BTW I have no family history, will be 70 later this year.

I wish now I'd insisted on getting the blood test to begin with. Anyway that's where I am now. 

 

BL53931
Posts: 9
Joined: Nov 2016

I got into the other place for a colonscopy next week, on my birthday. Great way to spend it but it needs to be done.  I decided I have a good chance of getting a positive on the blood test anyway and why waste time? 

Will update if anyone is interested. 

beaumontdave's picture
beaumontdave
Posts: 960
Joined: Aug 2013

We're always interested...................Dave

Trubrit's picture
Trubrit
Posts: 4756
Joined: Jan 2013

That is the reason we are here. To help you,to help each other, in any way possible. 

Of course, we hope you make only one more post here, telling us they found no Cancer. That will make us all very happy. 

TRU

takingcontrol58
Posts: 235
Joined: Jan 2016

BL,

I am a 2 year survivor of Stage 3 metastatic uterine cancer. 
I take the Cologuard test each year because uterine cancer is related to colon cancer,
and I had a 5cm metastatic tumor on my outer rectum.

The Cologuard test is more accurate than the fecal blood test. It tests for a tumor
marker called vimentin. Vimentin was found in my uterine tumor according to my
pathology report and I was initially diagnosed with Stage 3 cancer.

I would ask you doctor to find out if they found blood or vimentin in your specimen,
since the report results just say positive or negative.

If you look at the book they send with the test, it indicataes a positive result means that
they detected abnornal DNA (vimentin) and/or blood that could be caused by precancer or
cancer in the colon.

This test is a good test to use to tell you if you need to get a colonoscopy.
It would probably be a good idea to get one.  

Perhaps you should repeat the Cologuard test while you are waiting
for your colonoscopy appointment. Perhaps you also might test your blood
for CA19-9 (used for colon, liver and pancreatic cancer). I get many blood tests as I
would like a warning before I jump into more invasive testing.

Best of luck.

Takingcontrol58

 

 

Tucsonjj
Posts: 5
Joined: May 2019

Perhaps I am more skeptical than you, sorry so late to the thread, hope people read all comments...  you said If you look at the book they send with the test, it indicates a positive result means that they detected abnornal DNA (vimentin) and/or blood that could be caused by precancer or cancer in the colon.

IF this is true, why would the people at Exact Science/Cologuard refuse to tell you that?  They claim to look at several (maybe 13?) different "biomarkers"... so ??? and, if this is a true indicator of cancer, why 13% (they admit to this number, probably much higher) false positives?  You say "could be" caused... so... could also NOT be caused?

Not trying to be difficult, I am just angry that Cologuard refuses to disclose complete and specitic test results... IF they have them, IF their tests are legit... no reason to withhold this essential info that we paid BIG bucks for... and I find this VERY suspicious!!

BL53931
Posts: 9
Joined: Nov 2016

Had the procedure this morning. They found five polyps, four were benign and removed , one was mostly removed and biopsied and the doctor says he doubts it is a problem, although it may require surgical removal. It is very low in the rectum. He is not too worried about it.

Biggest issue for now is the Godawful gas pain. I understand it passes (pun) in a day or so and maybe I will go walking awhile to help things along.  Overall so far a good outcome. Thanks to all who were encouraging on here!

NewHere's picture
NewHere
Posts: 1066
Joined: Feb 2015

Sorry could not resist, but decorum changes a bit when dealing with colon stuff ;)  Besides it will make you feel better.  Glad to hear it is all good so far.  So much better to put your mind at ease about this all. 

Trubrit's picture
Trubrit
Posts: 4756
Joined: Jan 2013

I like to do a little dance. Bend at the knee and straigthen up. Bend at the knee and straighten up. Soon, you'll be dancing around the room to your own music. 

Glad your procedure is over and done with. 

TRU

BL53931
Posts: 9
Joined: Nov 2016

My only issue now is I am very tired. They told me I would be from the anesthesia for 24 hours. It is now more than that and I feel worse than right afterward. Went shopping this afternoon and felt exhausted. Two days until Thanksgiving  and I don't know if I will be able to do much. I read someplace that it helps if you up sodium for a day or so to replentish what was lost in the prep. 

This is no real issue compred to what others on here hve but I thought someone might have some tips. The nurse today said she thought it would resolve by tomorrow. 

Tucsonjj
Posts: 5
Joined: May 2019

One of the real problems with the widespread recommendation to do a colonoscopy, is that most never inform you of the dangers... or of the side effects.  I find this to be despicable... and believe Cologuard is just another way to pump up the BIG profits of the medical community.

Everyone should watch all three parts of this series:  https://www.youtube.com/watch?v=woREV5D1DLQ

 

BL53931
Posts: 9
Joined: Nov 2016

My doctor called yesterday. Turns out I misunderstood about the one polyp being partly removed, they were not able to extract any of it. I am being referred to a colorectal secialst and they will want to go in AGAIN and get that one out. My doctor did again say he does not believe it is precancerous, this would be just a precaution. This means I will need to go trough the whole pre-op again.   

My thinkng is I should do this but not for awhile. Perhaps in a  couple of months, this is just too much to go through all over again so soon. Any thoughts? 

Trubrit's picture
Trubrit
Posts: 4756
Joined: Jan 2013

You have to do what you feel is best for your situation. If they think the polyp is not pre-cancerous, then their is probably no hurry. 

As for going through it over again, I know where you're coming from. I had three colonoscopies in two months. I was heartily sick of them, and now it is time for me to get antoher one, I confess that, even though I know I should, I just don't want to do it again. 

I am glad to hear that your Doctor thinks there is no evidence of Cancer. Take this 'fright' as a chance to maybe better your eating and exercise habits, and enjoy life to its fullest. 

I wish you luck in the future. 

TRU

Tucsonjj
Posts: 5
Joined: May 2019

Polyps are not dangerous in and of tehmselves... and BTW, bad news... even if they cut out the polyps, bringing in more risk to you via bleeding, infection, etc... the polyps will usually grow back before your next colonoscopy!

BL53931
Posts: 9
Joined: Nov 2016

Not to belabor this, but it is getting a bit complicated. 

The medical group that the Dr who did the original colonoscopy referred me to is insisting on doing another full and complete colonoscopy- because that is their 'protocol'. I doubt our insurance will pay for a full procedure so soon, I appear to be limited to one such exam in a ten year period. I thought they could just simply go in and remove the stubborn polyp. No siree- it is an entire procedure which I honestly feel is over utilization. I am unimpressed with these people thus far.  I talked to three staff members there before anyone caught that I had already had an exam and that this was followup.  They are maiing a packet to me and once I get it I plan to call my insurance carrier to discuss. The person who scheduled my procedure mentioned that I needed to be sure this would be covered. That was a red flag to me. 

My wife is begging me to drop this whole thing for now. It is interesting that the guy who did my exam told her that he was not concerned about the remaining polyp, just that it would be a good idea to take care of it.

We are planning to change doctors shortly and may want to address this when the dust settles on that.   I feel right now as if I am being railroaded into a procedure that may be unnecessary and not fully covered. Just sharing. 

Trubrit's picture
Trubrit
Posts: 4756
Joined: Jan 2013

My suggestion would be that you get yourself a second or third opinion on this.  Chances are you'll get three different answers and be even more confused, but when that happens, then you have to go with your gut instincts. 

TRU

BL53931
Posts: 9
Joined: Nov 2016

I am one of those guys who likes to get resolution- living with ucertainity bugs me, but I think I may need to accept it awhile. I will wait for the information about the procedure then do some followup. I did get a call right after I posted from the nurse of the doctor who did the original exam. She says the doctor has no objection to postponement 'until February' which is when they know I have it scheduled anyway.  I would want to wait perhaps until later in the Spring. I have always had better outcomes when I do my own search for a specialist so I think that is where I will go on this. I seriously doubt I will have this done when they expect me to, just see no need for a  hurry up. 

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

Interventional Radiology

Do yourself a favor and get an appointment with an Interventional Radiologist in your area. They specialize in minimal invasive surgery, RFA, and have technology most general surgeons do not have.

Your insurance should cover the costs, and you generally do not need a "referral"; mileage will vary.

It appears you're running into brick walls; this might be your escape route!

Good luck and better health,

John

(In Google search bar, type: Interventional Radiologist  double space and your zip code)

 

veritas49
Posts: 1
Joined: Mar 2017

I thought I would share an experience I just had today and hope it might help a reader. I'm almost 68 years old. I have been remiss with colonoscopies having only one when I was 52  I was told no polyps and to return in five years  I foolishly did not  I recently saw the ad on tv for Cologuard and asked my GP about it  She wrote a script for it  I asked how long it took and she said two weeks and "pray it's not positive " I sent it in and started getting anxious almost immediately  Two week later she called and in a very serious tone said " I'm afraid it's positive " I freaked and told my wife who is a loving caring person  I fortunately know a surgeon through a club I belong to and see him from time to time on the links  I have heard great things about him  I called, explained what happened  how nervous I was  He kindly opened his office the next day early to meet with my wife and I. I had the GP send the Cologuard report to him. He calmed me down and mentioned false positives and said he needs to do a colonoscopy. You know these things can often take weeks to schedule but as a friend he did it two days later   - one day for prep  - and then the test today I could not sleep last night and was very depressed 

By 11 AM today it was complete.  When I woke up he told me I had one polyp , not to worry and all else looked clean. So it will go out for biopsy but he was very confident I would be fine   While I was recovering he met my wife in the waiting room and showed her pictures of my clean colon and she gave him huge hug.   

For what it is worth I thought I would share.   If I had to do all over again I would not have waited so long for the colonoscopy and I would skip the cologuard. He wants me to go once a year now and I'm fine with that. Good luck to all of you dealing with the same or similar issues. 

Cheer,

Veritasguy 

 

Trubrit's picture
Trubrit
Posts: 4756
Joined: Jan 2013

It is really helpful to hear about the false positives so maybe others with positive results can take heart from your story.  Also, learn that its not a good idea to skip the five or ten year colonoscopies. 

May you never have to visit this forum again. 

TRU

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

Thank you for posting that.  It helped relieve some of my anxiety.

dtaber04
Posts: 1
Joined: Nov 2017

I had a cologurd + test result! What a bunch of crap....It had me worried for 3 weeks and my colonoscopy was negative....why does Medicare even pay for this test? Some one is getting a kickback!!! The reliability of this test suck pond water and is a WASTE of $$$ for all of us....Boycott this test........................

GadgetOne
Posts: 5
Joined: Dec 2017

I was told 4 days ago my cologuard was positive. I have had no symptoms of anything. Nothing. Three months ago i was worried about my pancreous because my father died from pancreatic cancer, so my doc did a big blood test. She tested the folling. Cbc with differential, CMP (chem14), Lipid panel and ABD pain periumbilic. All tests came back normal. My stool has been normal. That is until she told me about the positve, i have hardly slept or pooped because i'm so stressed out. I have an appt tomorrow to meet the Doc that's going to do the colonoscopy. But i just don't understand. One of those blood test is for abnormal red blood cell count and it was NORMAL. So now i'm thinking either the blood test or the cologuard is wrong. My wife is really upset at the doc for the way she told me. Anyone know anything about the blood test i took?? 

Trubrit's picture
Trubrit
Posts: 4756
Joined: Jan 2013

The only blood test I know that indicates CRC is the CEA test, and that is not always reliable.  I know the CBC and CMP are done for general health, especially liver, but maybe there is something in there also, that I have not heard about. 

How old are you?  It will be wise to go ahead with the colonoscopy (espeically if you are over 50).  

We have had several folks pop here to the forum with positive Cologuard and followed up with colonoscopies with were clear, and we are hoping that you get to join their ranks. 

I am sorry for the stress this is causing you. I could tell you not to worry, but that would be ridiculous. I can tell you to TRY not to worry. Hows that! 

If you didn't want to go with the colonoscopy, you could try another Doctor for a second opinion. 

Good luck!  

I hope you pop back to tell us all is well and we can wish you a long and healthy life.  In the meantime, we are here to answer any questions or just give you support. 

Tru

GadgetOne
Posts: 5
Joined: Dec 2017

Hi. I'm 59 yrs old.The waiting for the colonoscopy is what's getting to me and with everything going on. In a span of three days my stool went from light brown to dark brown to black today. From what i have read the most likely cause of that is a bleeding ulcer. But i drink a lot of tea and drank dandelion root tea the past couple of days. That may also be a cause of the dark stool, dandelion root tea helps clean out the liver. At least that's what i'm hoping. I'm so stressed out that i have no idea if i'm even contiplating all of this right.Thanks for the reply.

GadgetOne
Posts: 5
Joined: Dec 2017

Okay, well if anyone has read my post they know what's going on. My latest revelation. Three months ago my doc told me to start taking fish oil for my cholesterol. Never had another thought about it, until now. One of the bad side effects of fish oil is bleeding in the stomach and black stool. So tomorrow i'm going in to find out if that's what is going on. If it is i'm going to be really mad that the doc didn't warn me about the side effects of fish oil. They also have me taking niacin for cholesterol and a uncommon side effect of niacin is black stool. So this should be interesting. I'll follow up when i know more.

Trubrit's picture
Trubrit
Posts: 4756
Joined: Jan 2013

I did not know about this side effect either, and have just purchased some expensive Norwegian Cod Liver Oil. 

I certainly hope you get to the bottom (no pun intended) of this, soon. Please keep us informed. 

Tru

Annabelle41415's picture
Annabelle41415
Posts: 6116
Joined: Feb 2009

My husband has taken Fish Oil for cholesterol many years and didn't have any bleeding but I'm sure that can happen.  I know that Iron can also cause black stools, even I believe Pepto Bismol.  If you take that it can discolor your stools.

Wishing you the best going forward.

By the way, this is a really old post. If you need more responses on Fish Oil, that should be another heading and you might get some great responses.

Kim

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