Cologuard Positive

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? 

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Comments

  • NewHere
    NewHere Member Posts: 1,390 Member
    edited November 2016 #2
    Get A Colonscopy (Most Likely)

    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.)

  • Trubrit
    Trubrit Member Posts: 5,625 Member
    Waiting is no fun

    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
    JanJan63 Member Posts: 2,478
    edited November 2016 #4
    Get the colonoscopy either

    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
    kmygil Member Posts: 876
    Colonoscopy

    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
    BL53931 Member Posts: 9
    edited November 2016 #6
    I did get a copy of the

    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
    BL53931 Member Posts: 9
    edited November 2016 #7
    Update

    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. 

  • takingcontrol58
    takingcontrol58 Member Posts: 264 Member
    Cologuard Test

    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

     

     

  • beaumontdave
    beaumontdave Member Posts: 1,206 Member
    edited November 2016 #9
    BL53931 said:

    Update

    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. 

    We're always interested......

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

  • Trubrit
    Trubrit Member Posts: 5,625 Member
    BL53931 said:

    Update

    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. 

    Of course we are interested

    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

  • BL53931
    BL53931 Member Posts: 9
    edited November 2016 #11
    Had the procedure this

    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
    NewHere Member Posts: 1,390 Member
    Fart Freely and Enjoy

    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
    Trubrit Member Posts: 5,625 Member
    Do the dance

    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
    BL53931 Member Posts: 9
    edited November 2016 #14
    My only issue now is I am

    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. 

  • BL53931
    BL53931 Member Posts: 9
    edited December 2016 #15
    Followup

    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
    Trubrit Member Posts: 5,625 Member
    BL53931 said:

    Followup

    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? 

    Follow your heart/gut

    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

  • BL53931
    BL53931 Member Posts: 9
    Not to belabor this, but it

    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
    Trubrit Member Posts: 5,625 Member
    Interesting!

    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
    BL53931 Member Posts: 9
    I am one of those guys who

    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
    John23 Member Posts: 2,122
    Interventional Radiology

    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
    veritas49 Member Posts: 1
    edited March 2017 #21
    Cologuard

    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