Mad at oncologist

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    Hello 76%,
    Yes CA19-9 is not the only reliable indicator to see if CC has spread or not. Scans seem more important to have monitored. If you don’t agree with your oncologist, you set the schedule on how often you want scans to monitor your CC.


    Dear 76%,

    I am sorry to hear that your CCA may have recurred.

    The question of surveillance after resection for our rare cancer does not seem well defined, and different doctors approach surveillance differently. I am not a doctor or medical researcher but did try and look into surveillance as a CCA patient.

    The research evidence on the value of regular CA 19-9 testing post resection for CCA is pretty sparse. I found one study that seemed to suggest that CA 19-9 will rise and predict recurrence maybe half the time, while the other half of the time, CA 19-9 may not move even if the cancer is recurring. Also there is no evidence one way or the other that catching a rising CA 19-9 early improves survival for CCA. This type of study has been done for other cancers and their tumor markers, and the results are mixed from cancer to cancer.

    The small amount of research on this suggests that a rising CA 19-9 can in some cases precede any other visible manifestations of recurrence by a few or even many months, which leaves the doctors with a quandary of whether to treat based on CA 19-9 alone, given that CA 19-9 can fluctuate or rise for benign reasons. If there is no visible evidence yet of where the recurrence may be hiding, then steps to determine appropriate treatment, e.g., biopsies, are not possible.

    Doctors tend to consult the NCCN guidelines on surveillance which recommend considering imaging every six months for two years as clinically indicated. The European ESMO guidelines are more aggressive and recommend scans and tumor marker blood tests every three months in the first two years. Doctors do express concerns that more aggressive surveillance may raise issues with insurance companies.

    Here are the ESMO guidelines:

    The plan for surveillance should be discussed between doctor and patient. In my own case, I am now 18 months out from resection, and have a CT of chest-abdomen-pelvis every 3 months, and a monthly CA 19-9, which will be the plan for the first two years. This reflects that my pathology report after surgery showed high risk features.

    I hope the diagnostic studies you are having find something that is treatable so your good results post-resection continue. Fingers crossed that the news is good.

    Regards, Mary


    Hi…..I’m 3 + years out from my diagnosis and first surgery with two recurrences in that time. At the time of my diagnosis, my CA 19-19 was totally normal with a 5 cm tumor in my liver. There’s a percentage of the popularion for whom the test doesn’t work due to some genetic issue. I’m one of them. No CA 19-9 tests have been done on me since then until recently when I changed oncologists. The reason for now tests was that if it didn’t show it in the beginning, it wasn’t likely to show it if there was a recurrence. The new oncologist did not apparently look at my first blood tests to see that it diidn’t indicate a problem, so when I go back for 3 month scans later this week, I’m sure he’ll have run the CA 19-9 again, and I will tell him this time. There’s no point in wasting money and resources for something that won’t show anything.

    If your CA 19-9 was elevated originally, I would think though that the doc should have been tracking it along with CT scans from the beginning to now.



    I was operated on for CC on 23rd October 2015. Followed by radiation therapy and chemotherapy with gemcitabine and cisplatin. Five weeks after chemo ended the first CT scan was clear, 3 mos later CT was clear. Next CT was supposed to be after 6 more mos but I was feeling tummy pains so I asked for it to be done at four and a half months. That scan was clear, that was about a month ago. By my calculations I figured there was a 76% chance that I had beaten this thing.
    On the 13th April I went to the ER with stomach pains. They found problems with my stomach but they also found a CA19-9 of 1197, two weeks later it is at 1643. By my calculations the CA19-9 probably started rising about three months ago.
    PETscan last week found a hotspot in my pancreas. EUS-FNA is tomorrow.
    I figure the new tumor is about 1.7cm in diameter. Maybe it can be resected but maybe not.
    I am mad at my oncologist because she wasn’t tracking CA19-9. The full-body CTscans cost thousands of dollars while the CA19-9 is about $6. If they had caught this thing when it was the size of a BB I am sure my prognosis would be better.
    Can anybody think of a reason why they wouldn’t track CA19-9 routinely?

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