Hi – new to the site. Just likely diagnosed with IHC
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Thank you Marions for the reply. The first ERCP biopsy showed only abnormal cells , but no diagnosis. The second doctor who redid the ERCP was more competent and obtained a few tissue samples. ( I have to stress to be careful and get a very experienced GI doctor for ERCP, not all GI doctors can do this procedure, and they should not). This biopsy came back with diagnosis of Klatskin Tumor adenocarcinoma. She is already weak from a present condition of anemia which was detected about 9 months ago, so I don’t know if this is related. The obstruction was found during an MRI which was ordered for the source of the anemia, instead showed something suspicious around the liver, and hence this ugly road of ERCP and diagnosis. I am still questioning the diagnosis, how can the pathologist really be sure of a benign or malignant tumor. This is already hard diagnose, so how quickly can they me certain of malignancy. I understand it is a bad location (as doctors love to emphasize) since it hits both ducts from the common duct, and also she is not a candidate for surgery. I would never let her even get a liver transplant, that may do more harm than good. I am on the first step of making appointments with oncologists.
Can you recommend any oncologists or cancer centers in Los Angeles? The GI doctor already ruled out chemotherapy as an option.
Also, anyone know of naturopath doctors?Thank you! It’s tough, but I am determined to help.
positivity…..(love your stage name)….you are asking good questions.
This is what I have learned. The diagnosis of cholangiocarcinoma can be difficult and may require numerous steps.
Unless detected by default i.e. accidental finding of scan results, Klatskin tumor rarely is found in early stage. Reason: it grows silently until blockage occurs.
Symptoms of blockage may be present as:
light-colored stools
dark urine
yellowish skin or eyes, which indicates jaundice
itching
pain in the upper right side of the abdomen
nausea
vomiting
weight lossERCP is the first step. During this procedure a brushing is taken, which most often comes as back inconclusive or negative. Reason: only a minute portion of suspected area is scraped, hence it is highly likely that a particular area does not contain enough cells to make a positive diagnosis.
But, there are those cases where ERCP has to be repeated for brushings or stent placement.
At the same time a stent is placed. This in turn allows for drainage of bile and many (if not all) of the above mentioned symptoms are eased or temporarily disappear. There are few reports of perforation or cholangitis, but the majority of patients fair rather well and, most importantly, they feel better too. The major cancer centers are quite adapt at performing this type of procedure.
Klatskin is a cancer located where the right and left hepatic bile ducts join. CA 19-9 or CEA tumor markers may not be elevated and the liver function test may also be normal. But, as you mentioned, there can be a blockage, which may not be cancerous. It is for that reason that obtaining a second opinion from a center treating a high volume of cholangiocarcinoma patients is recommended.
We have seen perfect liver function test and yet the disease was present. I believe that diagnosis of cholangiocarcinoma resembles that of a puzzle in where all pieces must come together. And, yes, we had a few instances in where intense follow-up testing revealed that of a non-cancerous stricture.
Did you have a biopsy and did it confirm cholangiocarcinoma?
Hugs,
MarionHello,
How long did it take to determine a Klatskin tumor? Did the doctors determine before a biopsy, and biopsy report only confirmed what they said? Was an ERCP necessary as the only treatment and diagnostic tool? This is the most invasive procedure and can cause complications. Did anyone have complications with ERCP and have to get another one for stent placement? I am trying to determine if stent placement is really necessary for all cases or sometimes premature and risky for patient when they can go without. Also, if you were diagnosed with Klatskins did your liver tests show normal results. Sometimes information does not make sense such as this. How can one have normal CEA and liver panel tests but still have this horrible tumor. Are all Klatskin malignant or can some be benign. The doctors are so quick to say malignancy even without a pathology report.Brian and Barbara…….Copanlisib (BAY 80-6946 is a MEK MEK inhibitor drug with anti-cancer activity. Please don’t hesitate from reaching out to Dr. Kim for further explanation.
Hugs,
MarionJanet,
Welcome to our wonderful group, although, of, course, wish you didn’t need to find us. You seem to have gotten up to speed quickly about two of the most important issues: importance of being treated by an expert, and ignor the stats! I loved your comment about needing more time than 8 months – that’s the right attitude!
Please keep us posted on your progress and reach out whenever you need information, support, etc.
Debbie
I was looking for you (my computer skills need work) and here you are. I went to MD Anderson because my son lives in Gilbert, close to the place. The Doc said he specializes in liver cancers. The oncologist at Palo Verde suggested the gem/cit protocol. Read online this only gives 8 months. I need lots more than that. I’ve read good things about MD Anderson in Houston, but not so much for the hospital here. They take Medicare so that’s good. I don’t know much about Ironwood.
No stents, just CT , PET scan, ultrasound. I’ll get a port next Thursday. I live in South Phoenix (equally far from everything) and would love to meet you when you get back. Have a fabulous trip and stay safe (hope you’re going for fun.)
Dear Janet, welcome to our remarkable family but so sorry you had to find us. You will find the most loving and caring people in the world, right here.
I too live in the Phoenix area, in Gilbert. My husband had the CC and went to a fabulous Doctor here who has retired but the rest of the office is at Chandler Hospital also know as the Ironwood Group. I know they are familiar with CC. Other opinions are very important as different Doctors see things differently.
Being itchy can mean the bile ducts are clogged. Do you have stents in the bile ducts? What is Mayo doing for you for treatment? You really need an ONC who has experience with CC. I had gone to MDA and it is actually a Banner Hospital and when I went there I was told by the ONC I saw (for something else) that he had treated only a couple of CC patients.
What part of Phoenix do you live in? Perhaps we could meet and talk if you like. I will be going out of town tomorrow and will be back September 4th. It is always a wonderful thing to meet other CC Caregivers and patients as you then realize you are not alone. Below is a site you may find helpful:http://cholangiocarcinoma.org/newly-dx/
Right there with you. I feel good (a little itchy and have lost weight) but have been told I have chalangiocarcinoma. Had PET scan (after 2 CT scans and ultrasound) and tumors in liver only, at first. But now have place that “lit up” from scan contrast, in neck. Had biopsy of that and am waiting. Always waiting. Was told from liver biopsy that the type of cancer in neck was not in liver. Had a parotidectomy then radiation several years ago.
I liked oncologist my primary recommended but this thing is so rare I decided to go to MDAnderson in Phoenix for someone who specializes in this particular cancer. Mine is Interhepatic also. The American Cancer Society has good information, just don’t drink the koolaide about the stats.
Brian and Barbara…….here is a bit more information on the trial:
https://moffitt.org/clinical-trials-and-studies/clinical-trial-18435/We know that gem/cis showed an average of 8 months overall survival. I am trying to find the preceding Phase I study results. Hoping to have that answer real soon.
Please let me add: overall survival is the medium survival rate. Some patients responded much better than that.
Hugs,
MarionHi Marion and All,
Here is what I have found out regarding the available clinical trial:It is Phase II
It is to study coplanlisib (BAY 80-6946) in combination with gemcitabine and cisplatin in advanced cholaniocarcinoma.
The Protocol Number is MCC# 18436
Moffitt Cancer Center is the sponsoring hospital and Dr. Richard Kim is the Study Doctor
Quick Summary: Coplanilsib is an experimental/investigational medication that blocks the enzyme Phospho-Inositol-3-Kinase (PI3K) that is normally important for the growth of tumor cells
Any thoughts?
These are good questions regarding the trial and I will ask them. I know that the pathology leaned strongly toward IHC but the markers were not 100%.
I will ask about Phase – looks like at least a Phase II trial
It is at Moffitt but I do not know if it Is an institutional trial.
I will also ask about the trial ID?Brian and Barbara…..clinical trials take are of importance for our cancer. We know that curative surgery is the first line of treatment, followed by systemic chemotherapy (Gem/Cis) and possibly a clinical trial. Is it a Phase I or is it a Phase II trial? What about the biopsy? Has cholangiocarcinoma been confirmed? Is it an institutional trial? Is it possible for you to share with us the trial ID?
Hugs,
MarionI have no opinion on the clinical trials as I have no experience with it. I would tell you to remember that everything they tell is all interpretation, not necessarily fact.
That’s a lesson I learned from the jackoff surgeon at the university of colo hospital. After he told me that he was absolutely correct that the tumor was inoperable, my sister asked to see the CT scan that he was basing this hard and fast opinion on.
He’s walking us through the scan which is this opaque picture, and he’s being definitive about something that is completely impressionistic. After seeing that I said this is all interpretation, I just need to find someone with a different interpretation than you, and I did.
Doctors are no different than any other profession, it’s all about experience and confidence. It’s just harder to gauge if they’re right when they say something can’t be done, or if they just lack the skills and their opinion is based on their inabilities.
The tumor board at Moffitt Cancer Center in Tampa has asked if Barb would like to be part of a clinical trial. In addition to the std chemo drugs of gemcitabine and cisplatin, they are combining a third chemo drug.
Note – Barb has ‘too many masses to count’ in her liver so chemo is the option.
Any thoughts on being part of a clinical trial?Brian,
The first GI doctor (an older, gruff guy) that did an ECRP on my mom told me right after he came out of the procedure that it was a klatskin tumor. This was before the testing was complete, but he told me he knows his business and he had no doubts.
My mom was in the hospital for 5 days and all that time we never got the results back. As she checked out some well-intentioned physician’s assistant tells us the test was negative, so we are like great. I talk to the GI doctor the next day on the phone and didn’t know we were told it was negative. He becomes ticked off at the PA and tells me to ignore the test results because its definitely a klatskin tumor, and the tests are imperfect. He was right.
Six weeks later we are having a cancer meeting with the oncology department at the Univ of Colorado hospital, like you are today. The surgeon, who was gigantic dick, told us it was not operable, and he goes so far as to say you can take these results elsewhere but you are going to find that he’s correct. I get the results double-checked by exactly one other hospital, USC, and they come back and say, “That tumor is totally operable. We don’t understand why your guy is telling you it’s not.”
Frankly Brian, do not allow yourselves to get caught up in something like this, because time will be wasted. “Is it a rose? No, might it be a tulip?” Who gives a shit? There is exactly one question you needed answered yesterday, is it operable and what time is surgery tomorrow? It’s just that simple.
This cancer spreads like pollen. You can’t let them run the show. While having, mostly, your best interest at heart, they will waste time you don’t have.
I hope you get good results today.
Best,
Joe
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