2 years 5 months post surgery, 2 years post radiation
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Hi- Thanks for your update and congratulations on reaching your two year milestone. Last week my husband and I celebrated the one year anniversary of his Whipple surgery. We were kind of amazed at all that had happened in just twelve months!
Last month I posted an update on my thread “Walking the Road” and expressed the same concern about the CA 19-9 values. My husband has had clear scans but his CA 19-9 has been creeping up with every check. For second opinions, we consult with a biliary cancer specialist at UCSF (Katie Kelley, who is also active with the CC Foundation) and she has echoed our regular oncologist that the test can be imprecise and that we should be reassured by the good scans and other blood work. I think Mary has answered your question very well but I did want to say, “I know how you feel” about those CA 19-9 numbers. They can get into a person’s head a little bit. I guess it just goes with the CC territory.
Thanks again for the update and I’m glad you are doing well and managing your symptoms. Best, Tilly
Thank you, its nice to know that I’m not the only one going through this period of “what’s going on here”.
Hi asmith,
It is great to hear how you are doing – thank you for your update. As you describe, surgery and radiation are major treatments and many of us experience long term effects of having our insides replumbed.
The CA 19-9 dilemma is very familiar. Doctors tell us not to worry so much, but my own tendency at least is to watch that number like a hawk. Looking at experiences reported on this board, however, we have seen fellow patients recurring without CA 19-9 rising, patients with rising CA 19-9 and no recurrence, and of course, sometimes CA 19-9 rises as an early warning signal of recurrence. Seeing all this, I understand why doctors don’t focus as obsessively on this one number as I tend to do.
Medical journal articles indicate that when CA 19-9 rises because a recurrence is afoot, in some cases the tumor marker can start moving upward as much as 9-10 months before anything is large enough to be seen on a scan. Doctors cannot treat what they cannot see, so it is generally wait and see until a recurrence reveals itself. Or maybe with time the conclusion will be this irritating number is moving around for some non-cancer reason. It sounds like you are getting close surveillance from your oncologist, which means that should there be a recurrence someday, it will be quickly caught and addressed.
Take care, regards, Mary
The biggest problem I am encountering is that the radiation seems to have given me gastroparesis. I won’t complain – not the worst thing that could have happened. I try to finish meals by about 4:30 in the afternoon.
One other side issue is that I have been anemic since the surgery. This is unusual for me in that I have hereditary hemochromatosis and prior to surgery needed to donate blood 3-4 time per year, due to high iron. No one knows why. One “theory” is that the portion of the upper intestines that absorbs iron was the portion that was removed to make my new bile duct.
Has anyone else on this list had issues with rising CA19-9? My numbers were in the 300’s pre surgery, and they dropped to 19 post. A little jump after radiation treatments but then they went down again – for awhile. They have been steadily creeping up, 110 last time checked. I see the oncologist now once every two months, and have scans every 6 months. The scans look great, nothing new. The doctor said that there is nothing else we can do. I am hoping that the CA 19-9 is due to inflammation other than cancer, but we have no way of knowing at this point.
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