2000miler

Thanks Eli.

The main point of my original post was that the foundation’s discussion of staging, which is at http://www.cholangiocarcinoma.org/staging.htm , should be revised to include the earlier staging system (AJCC 6th edition) since posts (2006 through 2009)on the discussion boards include staging comments which were made while that system was in effect. I think this is still good, regardless of the Stage IIB comments.

Another thing, my wife’s pathology report states the findings are consistent with intrahepatic cholangiocarcinoma and shows pT1N1MX but did not provide a stage. I understand the T1 (single 6.4 cm mass forming tumor totally contained in liver and not involving blood vessels) and N1 (spread to a hilar node), but MX means the tumor cannot be accessed. Does that mean they don’t know if the tumor has metasized to another part of the body? Does it mean the liver is not counted as another part of the body for ICC? I can understand how they can determine M1, but can they really determine M0 without a full body scan or something like that?

In any case it appears my wife’s stage is either Stage IIIC or Stage IV.

Bruce

I discovered that my wife makes her ice tea weak, using only 2 Lipton tea bags (55 mg caffeine/tea bag) in 48 fl. oz. of water (18.3 mg/8 fl. oz.), thus only 137.3 mg of caffeine in 60 fl. oz., well below the 500 mg total daily caffeine limit. The strength is a little more than that found in Nestea Iced Tea (17 mg/8 fl. oz.) and a little less than that found in Snapple Tea (21 mg/8 fl. oz.)

Classic Coke has 34 mg caffeine in 12 fl. oz., or 170 mg in 60 fl. oz.

Bruce

I was thinking of a spreadsheet with a row for each user ID and columns for CC data, such as Randi suggested, including such items as type of CC, operable?, size of main tumor, amount of liver resected, differentiated type, post surgery classification (R0, R1, R2), lymph nodes involved?, date detected, surgery date, hospital, surgeon, chemo used, radiation used, etc. In this way a multiple sort can find the cases that apply to your circumstances.

Including the user ID will allow us to search all the postings for that member’s posts and additional details.

Bruce

Marion – Very interesting introduction to genetic mutations and cancer for me. I’m going to have to dig into this more fully.

In reponse to Lisa’s question regarding whether they have frozen my wife’s tumor, we met with the surgeon yesterday and he told me they didn’t freeze it, but they did preserve it.

During the meeting, I asked the surgeon for his opinion regarding radiation for my wife’s condition (Intrahepatic CC with 1 hilar lymph node (R0)), which was the original question for this topic. I also inquired about the proposed chemo treatment. Now this surgeon has a PhD also, so I expected he was pretty much on top of the research in this area. He told me he didn’t think either chemo or radiation would be that helpful for my wife. He said that a few years ago nothing helped, then a study was done which said that GemCis added a couple of months to a person’s life and after that GemCis became the choice of chemo. He didn’t tell me the name of the study, but it appears it was the UK ABC-02 trial which showed that the progression-free survival for advanced or metastatic biliary tract cancer was 8.5 months for GemCis vs. 6.5 months for Gem alone.

However, when asked if my wife should undergo chemo and radiation, he said, “If its offered, take it.”

Bruce

Lisa- I don’t know if they froze the tumor but I’ll sure check it out. Very interesting. I thought that all cholangiocarcinomas were the same. I didn’t realize that we could be dealing with different mutations.

Bruce

Thanks again Eli. I checked the NCCN Guidelines Version 2.2012, Extra-2. It states “Consider fluoropyrimidine chemoradiation {f} (brachytherapy or external beam) followed by additional fluoropyrimidine or gemcitabine chemotherapy or Fluoropyrimidine based or gemcitabine based chemotherapy for positive regional lymph nodes {h}” I don’t know how to interpret that statement. Does consider apply to both part. As written it can be interpreted to read that “consider” doesn’t apply to the chemotherapy for positive regional lymph nodes and that “consider” only applies to the combination chemoradiation and chemotherapy for R1 or R2 or carcinoma in situ at margin, or positive regional nodes.

The paper you linked to, “Adjuvant treatment in biliary tract cancer: To treat or not to treat?” states the following under Guidelines and Current Clinical Practice. “The National Comprehensive Cancer Network (NCCN) guidelines recommend only observation or adjuvant CRT with concomitant fluoropyrimidine for patients with R0 margins or negative lymph nodes and adjuvant therapy with concurrent 5-fluorouracil-based CRT followed or not by additional fluoropyrimidine or gemcitabin-based regimens in patients with R1 margins or metastic lymph nodes.” So it appears here that the NCCN is recommending CRT with or without chemo for positive lymph nodes.

Also, it appears that the recommendation is to do radiation followed by chemo, whereas what the Ocshner oncologist proposes is to do chemo followed by radiation.

All very confusing to me.

Susie, thank you for your comments. It makes me wonder about second and additional opinions. I first ran into this when the Ochsner surgeon and his cancer board said to operate and the Southwest Medical Center and their cancer board said not to operate. We ended up getting a third opinion from a Baylor surgeon, who was the Ochsner’s surgeon’s mentor, and he said to operate, which I expected because of the mentor relationship. When we first met the Ochsner oncologist, she said that Ochsner was agressive and then rattled off about 5 other cancer centers which were either agressive or not. I kind of got the idea that this is tied in with their “do no harm” vow. The agressive doctors give me the impression that they will try almost anything to extend your life, even if what they are trying has not been statistically proven, whereas the non-agressive doctors don’t seem to want to take the chance that they may cause you harm.

As you say, in the end, it’s a personal choice, but I, like you, would prefer to get as much adjuvant therapy for my wife as they will give her.

Bruce

Thanks Eli. According to the paper “Intrahepatic Cholangiocarcinom: resectability, recurrence pattern, and outcomes,” Journal of the American College of Surgeons, v193, n4, pp 384-391, Oct. 2001, which I found from a link on one of these boards, recurrence in 20 patients, was identified as liver (14), retroperitoneal or hilar nodes (4), lung (4), and bone (2). I only have the abstract for the paper and it didn’t break down the recurrences into how many were R0 and other factors, but the fact that it would show up in the lungs and bone made me wonder if they would radiate those also.

Bruce