Question about follow ups

laudena
laudena Member Posts: 11
edited March 2014 in Colorectal Cancer #1
Since this is my first post, I'll give you some background. I was 66 then and had annual physicals every year, but not one of my PCP even suggested getting a colonoscophy until I had gotten enemic and started to pass some blood. I was dx on Dec 11th 2007 with cc. Had surgery on Dec 21st during which my surgeon remove all of my ascending colon and about half of my transverse colon so he could get the lympth and blood system feeding that side. The biopsy showed 16 of 29 noded were active so I was rated a IIIc. I was given a CT/PET scan in Jan and it show three nodes outside the area were active (maybe), but we decided to forgo any addional biopsies and go straight to the chemo. I started the chemo ragime on Feb 7th. The onc decided to start me out on the FOLFOX routine but for the second treatment of 12, he rated me a stage IV so the insurance would pick up the Avastion. I had a second PET scan after my 4th treatment and it came back from the radiologist as "significantly improved". Continued treatments with all of the usual, and some unusual, side effects. Next PET scan was after the 11th treatment and it came back "CLEAN", so my onc canceled my last treatment. WAHOO!!! I saw him in Aug and will see him again on the 14th of this month for followup. He mentioned in Aug that he would "probably" order another PET in Nov or Dec. Now for my question, What is your experience with follow up tests? How often and what type of tests, colonoscophy, PET, other besides the usual blood tests. I know some of you talk about a CEA test, to my knowledge I have never had one of those. Any information or insite you can give me would be great as I now know I need to take charge of my care.

Comments

  • msccolon
    msccolon Member Posts: 1,917 Member
    #2
    tests
    Congratulations on making it through FOLFOX! Sucks that your PCP never recommended a colonoscopy earlier, especially since you were past the "magic" age of 50... I think the schedule of followup scans is dependent on insurance coverage... I get one right when chemo ends, then another a year later. CT scans every 6 months. CEA is the carcinoembryonicantigen tested in your blood and you undoubtedly get that done quite often at the oncs along with your other blood counts; just ask your onc what your numbers were. It's not always a good indicator of colon cancer, but for some it is an accurate indicator of activity. Mine is pretty darn accurate; when it goes up, my cancer is getting more accurate. Prayers for your continued good health!
    Mary
  • laudena
    laudena Member Posts: 11
    #3
    msccolon said:

    tests
    Congratulations on making it through FOLFOX! Sucks that your PCP never recommended a colonoscopy earlier, especially since you were past the "magic" age of 50... I think the schedule of followup scans is dependent on insurance coverage... I get one right when chemo ends, then another a year later. CT scans every 6 months. CEA is the carcinoembryonicantigen tested in your blood and you undoubtedly get that done quite often at the oncs along with your other blood counts; just ask your onc what your numbers were. It's not always a good indicator of colon cancer, but for some it is an accurate indicator of activity. Mine is pretty darn accurate; when it goes up, my cancer is getting more accurate. Prayers for your continued good health!
    Mary

    Thanks Mary, and I think you
    Thanks Mary, and I think you may be right with the insurance comment. I work in the health care industry and go to Dr's in our large association network. I did ask my PCP about why he hadn't sent me in for the colonoscopy sooner. He gave me some tale about the risks involved with the procedure and that they only do the testing if symptoms present. I think we all know, at least in my case, by the time sysptoms present, we can already be in stage IIID+ or IV. I do intend to keep on my onc about followups. At this point, I don't care what the insurance co has to pay out, (so far they are paying 100%). I don't know how that will change when I go on medicare in two years, but by then I should have a pretty good feel about recurence.

    Allan
  • msccolon
    msccolon Member Posts: 1,917 Member
    #4
    laudena said:

    Thanks Mary, and I think you
    Thanks Mary, and I think you may be right with the insurance comment. I work in the health care industry and go to Dr's in our large association network. I did ask my PCP about why he hadn't sent me in for the colonoscopy sooner. He gave me some tale about the risks involved with the procedure and that they only do the testing if symptoms present. I think we all know, at least in my case, by the time sysptoms present, we can already be in stage IIID+ or IV. I do intend to keep on my onc about followups. At this point, I don't care what the insurance co has to pay out, (so far they are paying 100%). I don't know how that will change when I go on medicare in two years, but by then I should have a pretty good feel about recurence.

    Allan

    symptoms
    Allan, colon cancer's most notable symptom is the lack of any symptoms! By the time you are having symptoms it's advanced! I can't believe that today doctors are still trying to get around the colonoscopy; the one screening tool that can catch it before it ever progresses to cancer! GRRRRRRness! Take care
    Mary
  • dixchi
    dixchi Member Posts: 431
    #5
    Tests
    I agree....GRRR....I would find myself another PCP. CEA results should always be
    shared with you and explained and taken on regular basis. CT and PET scans should
    be done several times a year and are the only conclusive way to know if there is any
    activity in the body. CEA can register other things that have nothing to do to CA.
    I have myself run into problems with my insurance co being unwilling to pay their
    portion on more than one CT or PET scan a year. Fortunately I am on Medicare now
    and my other insurance is supplemental and is through my job retirement and what is
    left to pay is not huge but still a dent. I have filed an appeal on their rejection
    of my request for them to pay. This year I had three CT and PET scans done due to
    surgery being scheduled, etc. I would imagine that next year I will have at least
    two CT & PET Scans done to check what is happening. Hope this helps.
  • dixchi
    dixchi Member Posts: 431
    #6
    other test
    Forgot to add that I will also get a follow up colonoscopy next year due to my surgery
    this year.
    After colon ca has been identified, I think the usual schedule is a colonoscopy once
    every three years.
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #7
    dixchi said:

    other test
    Forgot to add that I will also get a follow up colonoscopy next year due to my surgery
    this year.
    After colon ca has been identified, I think the usual schedule is a colonoscopy once
    every three years.

    Mine is every year
    I was told that I am to have one every year but it probably varies .....
  • KathiM
    KathiM Member Posts: 8,028 Member
    #8
    Buzzard said:

    Mine is every year
    I was told that I am to have one every year but it probably varies .....

    I just went to 5 years...
    I had stage III rectal, but was not on a polyp. In fact, I have (at least so far) never had a polyp. This, I believe, influences the timing. For the first 3 years, I had a yearly scope. No polyps. This last one, my GI surgeon (oncology GI, mind you, who knows my history) said I can go 5 years, unless there are symptoms...

    I mentioned this last one I did a prep entirely with pills (no phosphosoda or golytely). I could take the pills with any approved (clear, not purple or red) liquid. The prep went SOOOOO much better for me than any of the others...I actually got thru the whole thing!!! My insurance didn't pay for it (I'm appealing), but it's worth the $75 for me to get a total cleanout, so no repeats of the scope!

    Hugs, Kathi
  • KathiM
    KathiM Member Posts: 8,028 Member
    #9
    KathiM said:

    I just went to 5 years...
    I had stage III rectal, but was not on a polyp. In fact, I have (at least so far) never had a polyp. This, I believe, influences the timing. For the first 3 years, I had a yearly scope. No polyps. This last one, my GI surgeon (oncology GI, mind you, who knows my history) said I can go 5 years, unless there are symptoms...

    I mentioned this last one I did a prep entirely with pills (no phosphosoda or golytely). I could take the pills with any approved (clear, not purple or red) liquid. The prep went SOOOOO much better for me than any of the others...I actually got thru the whole thing!!! My insurance didn't pay for it (I'm appealing), but it's worth the $75 for me to get a total cleanout, so no repeats of the scope!

    Hugs, Kathi

    oh, and no others...
    He also said I didn't need any other scans, either...again, unless I have symptoms...

    Hugs, Kathi
  • msccolon
    msccolon Member Posts: 1,917 Member
    #10
    KathiM said:

    I just went to 5 years...
    I had stage III rectal, but was not on a polyp. In fact, I have (at least so far) never had a polyp. This, I believe, influences the timing. For the first 3 years, I had a yearly scope. No polyps. This last one, my GI surgeon (oncology GI, mind you, who knows my history) said I can go 5 years, unless there are symptoms...

    I mentioned this last one I did a prep entirely with pills (no phosphosoda or golytely). I could take the pills with any approved (clear, not purple or red) liquid. The prep went SOOOOO much better for me than any of the others...I actually got thru the whole thing!!! My insurance didn't pay for it (I'm appealing), but it's worth the $75 for me to get a total cleanout, so no repeats of the scope!

    Hugs, Kathi

    colonoscopy prep
    Kathi, i did the pill prep on one of my colonoscopies (can't really remember which one, think it was the one after I finished my chemo rounds the first time) and I agree, that was AWESOME! That phospho-soda was horrible! However, my last prep was the Miralax mixed with Gatorade, which doesn't taste as bad as the phospho-soda, but 64 oz of anything taken in 8 oz increments every 15 minutes just isn't very pleasant! Awesome you don't have to do any scans and good luck with your insurance appeal... I'm willing to bet THEY have never had to do the prep for a colonoscopy, let alone multiple ones!
    Mary
  • laudena
    laudena Member Posts: 11
    #11
    Followup answers
    I would like to thank everyone on this board for all of the information I was able to glean. When I saw my onc Tues, I had a list of questions to ask. One them was about my CEA levels. He had been testing them but not relalying the results to me. It turned out that my pre-surgery CEA level was normal as it stayed thruout my chemo and even on Tues it was still normal so that is one marker he is ignoring for now. If it ever goes up, different story. As far as my followups, he will be haveing a CT/PET done every four month for at least the next couple of years, then probably every six months. I will be seeing him every six weeks for consult and bloot tests. He's more concerned with the cancer coming back some place else than in the colon so probably no colonoscopy untill maybe year three or four years. This pre-supposes that symptoms could present that would indicate cc that was not being seen on the CT/PET. At this point I think I have confidence that he is looking out for me properly. Again thanks to everyone that posted on this thread and on all of the other threads on this board. Lots of good info and tips.
  • Kanort
    Kanort Member Posts: 1,272 Member
    #12
    laudena said:

    Followup answers
    I would like to thank everyone on this board for all of the information I was able to glean. When I saw my onc Tues, I had a list of questions to ask. One them was about my CEA levels. He had been testing them but not relalying the results to me. It turned out that my pre-surgery CEA level was normal as it stayed thruout my chemo and even on Tues it was still normal so that is one marker he is ignoring for now. If it ever goes up, different story. As far as my followups, he will be haveing a CT/PET done every four month for at least the next couple of years, then probably every six months. I will be seeing him every six weeks for consult and bloot tests. He's more concerned with the cancer coming back some place else than in the colon so probably no colonoscopy untill maybe year three or four years. This pre-supposes that symptoms could present that would indicate cc that was not being seen on the CT/PET. At this point I think I have confidence that he is looking out for me properly. Again thanks to everyone that posted on this thread and on all of the other threads on this board. Lots of good info and tips.

    Welcome!
    Welcome to our group. I'm glad you found us. Having confidence in your oncologist is so important. Keep us posted on your progress.

    Hugs,

    Kay
  • pamness
    pamness Member Posts: 524 Member
    #13
    laudena said:

    Followup answers
    I would like to thank everyone on this board for all of the information I was able to glean. When I saw my onc Tues, I had a list of questions to ask. One them was about my CEA levels. He had been testing them but not relalying the results to me. It turned out that my pre-surgery CEA level was normal as it stayed thruout my chemo and even on Tues it was still normal so that is one marker he is ignoring for now. If it ever goes up, different story. As far as my followups, he will be haveing a CT/PET done every four month for at least the next couple of years, then probably every six months. I will be seeing him every six weeks for consult and bloot tests. He's more concerned with the cancer coming back some place else than in the colon so probably no colonoscopy untill maybe year three or four years. This pre-supposes that symptoms could present that would indicate cc that was not being seen on the CT/PET. At this point I think I have confidence that he is looking out for me properly. Again thanks to everyone that posted on this thread and on all of the other threads on this board. Lots of good info and tips.

    Follow ups
    I have pretty much the same regimen - however, I do have a colonoscopy every year - until I am three years ned - then they move to every three years and then every five.

    Pam

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