my husband stage IV

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elsie56
elsie56 Member Posts: 2
edited March 2014 in Colorectal Cancer #1
I have been reading some of the posts through the years and would like to share my story and ask a question.
My husband was diagnosed 1/03 with colon cancer. Prior to surgery his cea was 24. during surgery to remove colon tumor they found small tumor in liver which was also removed. He went through two rounds of Chemo but stopped because it made him so sick and he said that if there is no visible cancer why go through it. Since that time the onc has only done one CT scan in 1/04 when cea went up to 4.8 having been at 3.8 since the surgery. CT was negative. Since 1/04 the onc has only requested cea levels with no CT or PET scans. Cea continues to hover between 4.4 and 4.8. My husband is not a smoker. He has no symptoms - good appetite, has energy, etc. His next appt is for 4/06 and I think that he will have a physical exam and cea test. Should we insist that he have CT? or do you all think that just monitoring CEA is enough?

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  • lfondots63
    lfondots63 Member Posts: 818 Member
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    Hi Elsie,

    I love your name since my given is Elise. I am no expert but from what I have read of other posts I would say for you and your husband to tell the onc that you are worried and would like a CT done. I am glad he is doing so well and we all understand how you can worry about this. Good luck and tell him CONGRATS on the NED status so far.

    Lisa
  • kerry
    kerry Member Posts: 1,313 Member
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    Hi Elsie,

    It is my belief that blood work along with regular scheduled CT scans is a good idea. Doctors have different methods of scheduling scans. My doctor at MD Anderson Cancer Center monitors me very closely with CT scans.

    I think that it is customary to do follow up scans the first year at 6 month intervals and then after that once a year. PET scans generally are used to verify something seen on a CAT scan.

    Good luck to you and your husband.

    Kerry
  • taraHK
    taraHK Member Posts: 1,952 Member
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    I understand there is variation across centers but I am on a schedule of scan every 6 months. This may decrease to once a year after some time. I think it also depends on your personality. For me, I am willing to go throught the anxiety that scans bring for the peace of mind that they can also bring. So I push for more frequent scans and other relevant tests. But I am also one of those people whose CEA never rose, so that test is not useful for me. (I still have it done -- if it rises, that could mean something. But if it doesnt, that doesnt mean anything!). Best wishes.
  • jana11
    jana11 Member Posts: 705
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    Hi. I am also at MD Anderson with Stage 4. I get scan every 3-4 months.

    I would insist on a scan. Most likely your hubbie is great, but ... I'm a worrier.

    Best of luck! Hope you sail through with clean results! jana
  • spongebob
    spongebob Member Posts: 2,565 Member
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    Elsie -

    I agree with the girls, a scan is probably appropriate. Of course I'm no doctor, but it sounds to me like you can articulate to your doc why you think your husband should have a scan - I'm curious if your doctor can articulate why he thinks he doesn't need one?

    Remember, he's your advisor - make him do his job and advise. If you aren't satisfied with the advice you get then seek out a new advisor. Simple rule of business and human resources management!

    Listen to your inner voice. It's usually correct and it will certainly help you both sleep better at night.

    Cheers

    - SpongeBob
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
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    Elsie -

    I'm not a doc, but I have to say that just monitoring CEA alone does not seem to be the best way to follow Stage IV disease. I have been NED since 8/26/05 PET/CT after 2 cycles of chemo (I went on to complete 6 cycles). I am now receiving PET/CT's every 2 months. After the next one, if clean, it may be changed to once every 3 months. And I'm sure as we move down the road it may be pushed out a bit more, but my oncologist is a fan of frequent trips to the scanner and so am I. My CEA, for example has never meant anything - in fact we rarely test it -
    10 days after my colon surgery which confirmed a liver met, my CEA was 0.5.

    So, while there are different testing philosophies I would still urge you to push your doctor for a PET/CT - it really seems to be overdue at this point. And it is great your husband is feeling well, but so far (knock on wood) my disease has never made me sick - only the treatments. And of course you want to catch a recurrence long before it makes you sick.

    Good luck.

    Betsy