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Thanks for the reply Debbie. My mom is not a candidate for surgery, and even if they are able to get her to a stage of surgery, she is too weak to undergo it. So this is completely ruled out. I hopefully can find another treatment. She is also not a candidate for chemo, due to her anemia. We have a very unique situation, and still determining what to do. There is no one that I could find who has a pre-condition of severe anemia and CC.
I am still having issues with two ERCPs performed on my mom in two weeks. She has lost more weight and feels full from food quickly. Even though she has CC, can this appetite loss or sense of being full quickly from the stents? She feels the ERCPs made her worse. She did get pancreatitis from the first ERCP and other issues which I am sending a complaint to the hospital. These doctors need to be looked at closely also if they have poor communication with patient. The first GI doctor didn’t even follow up with us, and another doctor in group was sent in her place to follow up. I was very displeased with this entire GI group, and for several other reasons.
Did your husband lose his appetite after stents in ducts? Lose weight or feel different separate from his CC?
A highly nutritious diet cannot hurt, but help anyone with this bad condition. I am trying to make sure my mom is eating more healthy foods, although she doesn’t have a big appetite. I figure she already has an awful intrahepatic tumor so what harm will nutrition do. She cannot have surgery or chemo, so there is no other option. I was trying the twice a day liver cleanser of Milk Thistle, do I know if it works? No, but it’s worth the try gain because she is not getting any treatment. We are just starting the journey of seeing oncologists and I know some I will not work with and hopefully one will give us more alternative therapies or a possible clinical trial. Lifestyle changes are critical such as stress reduction, nutrition, and not over exerting oneself. I also try to give her one cup of carrot juice daily and immune supplements.
Hi Sirena,
Thank you for the response. Please ask questions and still be hopeful even if it has spread. What treatment center do you go to?My mom was recently diagnosed, so I am in the beginning stages. Currently I am looking into treatment centers such as City of Hope. She is not a candidate for surgery, and I don’t feel comfortable even if she was. She is too weak to get surgery so I am looking for alternative treatments. She is also not a candidate for chemo. My mom also has stents in her bile ducts and will need them replaced in two months. There is a lot to learn and manage. Do you think the stents are causing the problem or pain? Did her CC start in both left and right ducts of the common duct?
All the best again.
Hi Marions,
Thanks for your response. My mom recently was diagnosed and I am scheduling appointments with Oncologists. She only saw the GI doctors for the MRCP, ERCP procedures and a diagnosis based on what they saw from scans. They diagnosed the same before the pathology reports. I was extremely displeased with the first GI doctor who did the ERCP, and she did not do a thorough job which another doctor had to redo the ERCP. My mom also experienced complications from the first ERCP which made her more sick. It’s extremely important that people choose a very experienced GI doctor for an ERCP, this takes more knowledge, skills, and tools than your basic procedure.
I am looking into City of Hope , UCLA, and does anyone know about Cedar Sinai? I am glad to hear that there is better treatment today. I am in the beginning stages of looking for treatments since my mom is definitely not a candidate for surgery, liver transplant, or chemo. That’s a good thing! I feel those will make her worse and not worth it. This is due to her age and anemia.Thank you!
That is incredible! Wonderful for your recovery!
I never imagined to be here or learning about this condition. I didn’t even know anything about bile ducts,not a part of the body you commonly know about. Until my 74 year old mom , out of nowhere was diagnosed with Klatskin tumor, adenocarcinoma. I still want another pathologist to look at tissue sample, although two GI doctors diagnosed it as this before the biopsies. It was determined from the “bad location” which they love to emphasize. It is at both left and right hepatic ducts at the common duct, and before biopsy said she is not candidate for surgery. Even better, I would not want her to go through the torture of surgery as she is already weak from a current anemia. The liver mass was found during an MRI to look for the source of anemia, and instead this was eventually found and finalized through ERCP. The GI doctor also said she is no candidate for chemo, which is also good since she is not strong to handle chemo. This is tough, but there must be some treatment which boosts the immune system, as I think this is what needs to strengthened, and doctors need to look at patients as individuals and not use the same treatments for everyone.
I can’t believe there is no research or studies dedicated to this cancer compared to other cancers. I feel there is not enough advancement and know that oncologists make most money from chemo treatments. I disliked the GI doctors for being extremely negative, and basically didn’t do anything ,but give a diagnosis. Once GI doctor didn’t even have the decency to call and report to us the diagnosis of Klatskins. The only way I found is by getting the pathology report by my own effort, and no doctor involvement.Again, it’s incredible since I am in the beginning stages, to hear success stories.
Serena,
My Mom has Klatskin Tumor and had a bad ERCP the first time due to:
1. The doctor didn’t take adequate samples for biopsy
2. The stent placement was either misplaced or moved
3. Caused her bilirubin to elevated very high
4. Experienced bad jaundice, more so than before procedure. She hardly had jaundice before procedure, slight yellow in eyes , but nothing alarming.
5. Caused mild pancreatis which needed to subside before another GI doctor having to redo the job.This was frustrating and made my mom weaker by prolonging her hospital stay. Not all doctors can perform ERCP, and we got a incompetent one, otherwise another GI doctor would not have to redo procedure. It made my mom worse, Before her ERCP she had a bilirubin of around 3.5, and after the procedure it went up to 15!!!! NOw after the second ERCP, it’s back to normal around 3 (although considered high, normal for her) Unfortunately, the ERCP was necessary for a biopsy to get a diagnosis. I am still questioning if stent placement was necessary, as the first round made her worse, and it was replaced.
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.
Hello,
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.
