Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS)
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Thanks maryvz, I didn’t know that. I’ve downloaded all 15,229 of the cholangiocarcinoma cases in the SEER. I checked the SEER registry for those cases and none of them are from the Veterans Administration, so perhaps they just don’t include them in their public database anymore.
I wouldn’t say this is a flaw in their data since many cancer facilities in the United States don’t report their cases to the SEER. The cancer facilities in your state of Virginia don’t report. SEER estimates they cover about 28% of the US population, but when they started in 1973, they didn’t have anywhere near that percentage. The cancer facilities in my state of Louisiana started in 2000.
Bruce
Bruce, you do know that the SEER data is flawed because the Veterans Administration stopped reporting cholangiocarcinoma cases back in 2004??? In the 10 years prior to that they had reported over 800 cases. Given the long latency period from exposure to onset of symptoms, I would imagine that there are many more than 800 cases involving vets over the last 10 years that are missing from the data repositories.
Hi, Bruce
Thanks for the data.
Mine Ln is located between the liver and the Morsion’s Pouch near the top of the kidney. it is less 1 cm in size, PEI for treatment.
God bless.Percy, the 12 locations for the positive nodes are:
Abdomen
Abdomen
Celiac
Diaphragm
Gall Bladder
Gall Bladder
Hilar
Liver
Liver
Near liver
Pancreas
Pericardial, etc.I believe that most of those patients who did not report lymph node status did not have positive LNs. Assuming that this was the case for all who did not report LN status, the percentage of all patients with positive LN status would be 14.5%. I’ll have to check other sources to see if this is about what should be expected.
Bruce
Hi, Bruce.
That is about 23% of the member population had reported lymph node involvement and there is at least one positive LN involvement of the 61.6% of the 117 reported cases which include LNs.
Can you tell me the 12 reported locations or areas of the affected LNs, I would like to use them to compare the one LN that I had been treated yesterday.
again , thanks for your professional help.
God bless.Hi Percy,
I keep track of the number of positive lymph nodes and their regions. I don’t think anyone has ever reported the next organ that will be affected based on the region, but if someone did, I would add a column and record that also.
Of the 498 cc patients for which I have recorded data, 117 have reported their lymph node status, and 12 reported the location of the affected LNs. The 117 was divided into 45 with 0 positive LNs, 44 with an exact count of the positive LNs, and 28 with more than 1 positive LNs.
Bruce
Hi, Bruce,
In your data collection of our members; do you keep track of patients who have lymph node involvement ,the regions(mediastinal ,hilar or mesenteric),number of the lymph nodes and the next organ that will be affected based on the regions( the direction of metastasis based on the lymph node first metastized from the liver.) .
God blessI previously thought that the Roux-en-Y procedure was just done for extrahepatic cholangiocarcinoma. However, while reviewing the article “Treatment outcomes and prognostic factors of intrahepatic cholangiocarcinoma,” by R. Dhanasekaran, et al,
http://www.spandidos-publications.com/or/29/4/1259
I found the statement, “Extrahepatic bile duct resection with Roux-en-Y reconstruction was carried out in patients (ie IHCC patients) with bile duct invasion or lymph node metastases.” My wife had IHCC with a single positive LN and I remember the surgeon telling us that he was going to do something beyond a simple resection, and it would be more like surgery for extrahepatic cholangiocarcinoma. I checked the pathology report and the extrahepatic bile duct was listed as a specimen. I’ll ask the surgeon about it at our next meeting.
Bruce
Our Patty, the librarian, came through for us. Eli, I have no idea how to post it hence, I am mailing it to you via your personal e-mail with the hope that you can attach the link.
Thanks and hugs,
MarionThanks Marion. I was able to download Patel’s paper off the Medscape site. I set up my account with them months ago. The paper was proceeded by almost 3 pages of Medscape stuff, but it was there. Altogether, there were 24 pages.
Also, thanks for the advice on the unpublished phase II clinical trial results. I haven’t written the clinical investigator about the results, but I intend to.
Bruce
Bruce, Eli ..I have contacted a librarian, who might be able to retrieve the above mentioned study. I will keep you posted. Here is the abstract.
http://www.ncbi.nlm.nih.gov/pubmed/21460876
Hugs,
MarionHi Bruce,
You wrote:
Quote:Is there any difference between the hilar cc that is referred to as being intrahepatic cc and the perihilar cc that is referred to as being extrahepatic cc?I don’t think so. As far as I know, hilar cc and perihilar cc is the same thing. Hilar CC was misclassified as intrahepatic at some point. The classification was later corrected, but much confusion remains.
See if you can access Patel’s paper, Cholangiocarcinoma – Controversies and Challenges. He discusses classification challenges in section 2. You might need to register for a free Medscape account to see the paper.
http://www.medscape.org/viewarticle/739598
Eli, here’s another.
The AJCC Staging Manual, 7th edition describes the three geographical regions for cholangiocarcinoma as intrahepatic, perihilar, and extrahepatic. Others have referred to perihilar as Klatskin and extrahepatic as distal. Perihilar (Klatskin) and extrahepatic (distal) together have been referred to as extrahepatic, which is very confusing since the same name is used to describe two different locations.
Now, some authors refer to intrahepatic cc as consisting of peripheral cc and hilar cc, with hilar cc originating from a main hepatic duct or from the bifurcation of the common hepatic duct.
Is there any difference between the hilar cc that is referred to as being intrahepatic cc and the perihilar cc that is referred to as being extrahepatic cc?
Bruce
Bruce…it is a common problem in that these studies are completed and yet findings are not published. In fact, clinical trial participants are entitled to receive that also.
You may want to reach out to the Clinical Investigator.
Hugs,
MarionI just noticed that the clinical trial, NCT00123825, “A Phase II Trial of Gemcitabine and Cisplatin in Unresectable Or Metastatic Biliary Tract and Gallbladder Cancers,” sponsor Dana-Farber Cancer Institute, was completed on 10/01/2007, but there was no published paper on its results.
Is this common practice?
Bruce
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