Thanks Eli for the info that the foundation's link on staging is out of date. I found that I could download all of the previous AJCC Cancer Staging Manuals from the AJCC website for free. I downloaded the 6th version (2003-2009) and found that it matches the foundation's info on staging for ICC (pp131-138 of the manual.) I also finally looked at the NCCN Guidelines for ICC (7th ed., 2010) which you mentioned and found the staging that Percy previously stated. It's interesting that they dropped the MX classification (which the Ochsner pathologist used) so I assume, since they didn't find any distant metastasis, M0 must apply. If that's the case, my wife's stage is Stage IVA.
At least that's what it looks like until after I digest Percy's comments. Percy, I just learned today, after reading the 6th edition of the cancer staging manual that there is both clinical staging and pathologic staging. The surgeon never told us the clinical stage. He did say that it was intrahepatic cholangiocarcinoma but because the cancerous lymph node, which was pressing against the common bile duct and causing it to bleed on the inside, I thing he said he was going to perform the surgery more like he would do extrahepatic cholangiocarcinoma surgery. We had conflicting opinions on whether the lymph node had fused to the common bile duct. I believe the surgeon thought it had and the doctor who inserted the stent thought they were separable. The surgeon intially said that he would have to remove all of the right lobe and some of the left lobe, a total of 72%, but after the surgery, he said he didn't have to remove as much as he initially thought. A couple of weeks after the surgery we met in his office and he gave me a copy of the pathology report and he went throught it with us, emphasizing that it was the best he could have ever expected, specifically addressing the 1 positive node out of 7, and the 2 cm margins. Later the oncologist went through the report with us and the one thing she was concerned with was the "poorly differentiated" histologic grade.
The pathologist report shows the following:
1) Falciform ligament - fibrofatty and vascular tissue. Negative for malignancy
2) Hepatic Artery Lymph Node - One (1) benign lymph node
3) Biliary Stent: Gross Diagnosis only
4) Proximal Bile Duct Margin: Negative for Malignancy
5) Liver Segments 4B, 5, 7, and 8; Partial Hepatectory: See Synoptic Report:
Procedure: partial hepatectomy, major hepatectomy
Tumor size: 6.4 cm
Tumor focality: Solitary
Histologic type: Cholangiocarcinoma
Histologic grade: Poorly differentiated G3 out of 4
Tumor growth pattern: Mass forming
Microscopic tumor extension: Confined to the hepatic parenchyma
Hepatic parenchymal margin: uninvolved, 2 cm from tumor
Bile duct margin uninvolved
No lymphovascular or perineural invasion identified
pT1 N1 MX
One (1) hilar lymph node positive for metastatic carcinoma out of 6
Additionally, hepatic artery lymph node is benign
Background liver is unremarkable
Immunostains performed with appropriate positive and negative controls. Tumor cells are positive for keratin 7 and negative for keratin 20, hepatocyte antigen, and estrogen receptor. Findings are consistent with intrahepatic cholangiocarcinoma. Tumor surrounds and invades a medium sized branch of the biliary tree. There is marked acute inflammation and necrosis in the tumor.
I think I included both info from the surgeon and the pathology report in my previous messages on the discussion boards.
When I said "spread to the liver" I envisioned the cancer starting in a small bile duct contained within the liver and spreading from there to the liver which is in direct contact.
Thanks for the advice on the PET scan. The surgeon said that their policy is a CT scan every 6 months. Maybe this is a Medicare thing. I'll ask the oncologist about the PET scan.
Right now my wife is scheduled to get GemCis for 4 months on a 21 day cycle, the amounts being the same as used in the Phase III study, and radiation with 5FU for 5 weeks, 5 days a week. So, as you suggest, what I'm trying to do is research what we can do to extend the recurrence time. I've read a lot of the published studies and I can't find the answer there, so I'm trying to research the members of this foundation to document their experience. So, far I've got about 50 on the spreadsheet, but unfortunately, only 1 of the 50 comes close to my wife's condition. I thought you might be a candidate because of the Stage IIB you reported. The report I had said Stage IIB for bile duct cancer indicated the cancer had spread to nearby lymph nodes in addition to other factors.
Percy, thank you for your kind remarks about my contribution to the board. Eli and I are both engineers, and I think it is in our nature to be detailed oriented. I'm 76, retired when I was 57, and most of my career as an electrical engineer was supporting NASA on the Saturn/Apollo "moon" program, the Space Shuttle, and the International Space Station. After the moon landing in 1969, people said, "If we can put men on the moon, then we should be able to _____ (fill in the blank)." Perhaps this should also apply to finding a cure for this horrible disease.
Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice. ALWAYS seek the advice of your physician or other qualified health care provider.