Hi

As a general comment, I see my onc every four months, and she typically orders eight to 12 panels (Chem 20, CA 19-9, liver function panel, CEA, etc., etc.). BC I’ve had some blood test anomalies, I’m getting most of them monthly when I don’t see the onc. During chemo, I had a bunch of tests weekly, and the local onc decided go or no go on that weeks infusion based on the most recent blood work. Any time there’s any reason for uncertainty is time to increase the blood test frequency. BTW, I wouldn’t read too much into one or two CA 19-9 results. I would just be happy it’s < 37.

I’m going to have to ask my oncologist about that for sure. My local oncologist has and will consult with the oncologist at Sloan, so maybe another call from my local guy up there wouldn’t be a bad idea.

Derin, I’m really surprised you have not had monthly CA 19-9 tests, along with liver function panel, etc. For nearly the first year after my resection, I had lots of CA 19-9’s. You should be getting that one at least quarterly, along with an occasional CEA marker test. About the only reason to not prescribe the CA 19-9 is some patients with cc don’t have any meaningful response to it (I have a friend in that category)

LeeAnn, I’m going through something very similar. I had a successful resection 4/2009 with clean margins, followed by six months of Gemzar. Blood tests were all unremarkable and normal through 8/2011, when I decided to use my standing order for blood tests. CA 19-9 and bili numbers were high, and have continued to be high (CA 19-9 highest was 160ish and total bili ~ 1.4).

The approach my onc has decided upon is to increase the frequency of PET/CT and followup visits to 4 months from six months. You should be aware that the CA 19-9 marker test is subject to some amount of random variation and is influenced by any inflammation or infection you may have. So far, all my PET/CT and CT’s have not shown any recurrence of cc. I’ve decided to just not worry too much about the blood tests, as long as the PET/CT do not light up. I’m putting myself in the hands of some pretty smart people and I just have to trust them.

BTW, a PET/CT is particularly good to find recurrence of cc, since active cancers growths illuminate green on the scan (areas the have significant glucose uptake). The blood tests are bothersome, though.

Good luck with the scans.

LeeAnn….and, that is why we call it the great roller coaster ride – we never just know what hits us next. I like that your doctor moved quickly and that everything is lined up to go. Hang in there. You are ready for the counterattack.
Hugs and love,
Marion

LeeAnn,

I’m guessing you had perihilar CC, a.k.a. Klatskin tumor. NCCN Guidelines view them as extrahepatic CC.

A quote from page MS-25 of the Guidelines:

Based on this comment, I’m guessing you should be looking at slide EXTRA-2, which gives you 4 options. I understand that it’s not very helpful. You are right back at square one where you are not sure if you made the right choice. You might want to seek 2nd and 3rd opinions.

Ask your oncologists to review your post-surgery pathology report one more time. Ask them to look for risk factors *other* than positive margins and positive nodes. Two additional risk factors I’m aware of:

* perineural invasion (cancer cells invading the space surrounding nerves)
* poor cancer cell differentiation (differentiation refers to how different the tumor cells are from the cells from which they originated)

I recall reading medical papers that linked these two factors with worse survival. If your pathology report mentions either one of these factors, ask your doctors whether you should give more serious consideration to chemoradiation or chemo.

Best wishes,
Eli

ADDED: Government databases that track cancer statistics classify Klatskin tumors as intrahepatic CC. In the past, they used to classify them as extrahepatic CC. This change in classification created a lot of confusion. That said, NCCN Guidelines seem pretty clear. They put Klatskin tumors under extrahepatic CC.