Topic: New Member

Hi everyone ,
First of all let us introduce ourselves.
We are four from Greece Eleni,Dimitris ,Evi ,Elpiniki. At 23th March our dad, age 67 was diagnosed after examinations due to the following symptoms (jaundice,itching,loose weight) with the intrahepatic cc.
At 26th of March we went to the hospital of Athens and they did all the necessary examination such as MRI,MRCP,blood test,MRA and a Pet Scan.
Doctor said that it's very difficult case and we had little chance.Finally on 12 of April they proceed on surgery.The doctor said that it would be a huge surgery that it could last even 10 hours. After two hours he came out and told us that they didn't find what they expected as they thought that it was at the gate of the liver but it was inside it.They didn't find spread anywhere in the liver or in the bell duct or just only they mentions that the liver was hard,So they decided to remove the bell one expanded lymph node and one piece of the liver which they took for biopsy and all found negative for cancer malignancy.
Finally the doctor said that is nothing that it could be done because it was inside the liver and it concerned both of hepatic ducts and also chemotherapy could not help him at all for this specific case.On the 24th of April he did the ERCP and they put a stent.The results of the ERCP with brushing was negative but as they told us brushing biopsy is not an accurate method.
After four days he had several fever after that he is on "ciproxin" antibiotic and a "ursofalk".
We went to a several doctors and they all said that it can not be operating and is no use of any chemo or any other therapy.
We are still seeing other doctors as we are trying to find what is best for him.
Anything you may have to suggest for doctors,therapy's or anything else that you know for your experience will help us as we believe that you are doing a great job with this.


Thank you,
Elpiniki,Dimitris,Eleni,Evi

Re: New Member

Hi Elpinki and family,

I welcome you all to the site although I am sorry that you all had to find us here. And I am sorry also to hear about your dad. But I am glad that you have joined us here as you are in the right place for support and help , and I know that all 4 of you will get a ton of both from everyone here.

Thanks for sharing what your dad has been through so far and I know that it must have been hard for you all. I know that as I was my dads carer during his fight with CC so I know what you are going through. My dads CC was deemed inoperable from diagnosis so he was not able to have surgery at all, and hge never had chemo either, he had PDT.

I know you said that your dad went to see several doctors about this but can I ask if all of them were experinced in dealing with and diagnosing patients with CC? The reason I ask is that this is a very complicated cancer to treat and diagnose and it is also quite rare compared to other cancers. I would urge you to seek out doctors who have experience in dealing with CC to get their opinion on things.

As to chemo, did they say that they would not be able to do chemo at all or just not attempt it right now? You said your dad had a stent fitted and my dad did also, they are very common and are used to unblock the bile duct. Did they say anything about attempting chemo once your dads duct was clear again? Did they not mention radiation or anything like that as being a possible option here?

I know that trying to take everything in right now about all of this will be so hard for you all but please do not give up hope. Keep coming back here and let us know how things go for your dad. I know that others will be along soon to offer some of their thoughts to you as well. And if you have questions then ask away and we'll do our best to help. We are all here for you and we care.

My best wishes to you all,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New Member

Dear 3 E's & a D welcome to our remarkable family but sorry about your Dad. As Gavin wrote you must be with an experienced Medical team to fight this CC. I have a crazy question as I don't know the rules where you are BUT can you go to another Country for treatment? Why did the Surgeon say it was difficult and then went ahead and did the surgery? What kind of Surgery? Something does not sound right to me at all. It is like, first yes, then no, then yes , then no! I am wondering if these Docs had any experience with CC? How old is your Dad? Again my best is to tell you to see if you can go elsewhere? Best wishes and let us know what you find out.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: New Member

Hello Elpiniki,Dimitris,Eleni, and Evi.....welcome to the site no one wants to belong to, but is happy to have found. I don't have much to add to what Lainy and Gavin have mentioned other than the below physician I had spoken with (at a medical conference) has experience with this disease.  He may be able to refer you to a colleague located in your vicinity.   

Dr. Nomikos, MD, FACS, General Surgery, Surgical Oncology:
nomikosj@otenet.gr

Additionally, we have a few members residing in Greece who hopefully step forward and help you out with finding a physician for a second opinion which, I believe, is a must with the diagnoses of cholangiocarcinoma. 
Your Dad has a great team on his site making it all the more important when touched by this rare cancer.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: New Member

Hi to everyone again..thank you very much for your prompt response!
These questions if the doctors were actually expereinced on cc, if they did the best they could do and so on are ''eating'' us all these three months that we are fighting with cc. Supposedly they were and are the best doctors here in Greece concerning liver and cc situations. As already have said we are still seeing more doctors..a few days ago we found out for a similar case of ours with a patient that proceeded with a surgery that in the end didnt happen as doctors decided that it could not be operated during the surgery (so they just opened and closed the patient). This patient went to another doctor who finally did the surgery, the surgery went well and till now he is ok. So today we went to see this doctor who said that he thinks that he can do this surgery and take the cc out of our dad, all he asked was to repeat the MRCP and MRI to see if things are the same as the last exams, of course he mentioned that this surgery if it will be able to take place will be very difficult with high risk but we should take this risk in order to save our dad.
So now we need to talk again with our dad to see if he is willing to proceed with new exams and a possible new surgery (as he is tired and trusts the first doctor that did not do the surgery)- really hope that we can actually find a solution!!
I have to add that our dad is at the time being in a very good health condition .

As to the questions you made, our father is 67 years old, we have already visited Mister Nomikos but unfortunately told us that there is nothing we can do , yes we are willing to see doctors in other countries if this will help to save our dad.

Regarding other treatments all doctors said that will not help in this case, only surgery would be the solution.

Also the doctor told me today that we could also use the Spy Glass method so as to have more accurate biopsy , has anyone did this? any comments?

Thank you all so muchfor yor support, i really hope the best to all of you...

Re: New Member

Hi elpiniki,

Thanks for giving us the extra info about your dad, and it is good to hear you say that at this time he is in good health. Long may that continue for him.

Spyglass has been discussed a few times here on the site and I did a search for you and it threw up these discussions, hopefully some of them will be of interest to you but I have no personal experience of Spyglass.

http://www.cholangiocarcinoma.org/punbb … 1393473843

The situation that you talk of regarding that person whose surgery was aborted after it begun is unfortunately quite common with this cancer. Sometimes a surgeon will not know what exactly is going on until they have begun with the surgery and they find something that means that unfortunately they feel they can not continue with it. But please do not give up hope over this as this is most certainly not the case for everyone.

I'm glad to hear you say that you are still exploring other avenues with different doctors and I wish you every success with that. And please let us know how these discussions go with your dad and what he decides that he wants to do. I know when my dad was fighting this I told him that I would support him in what ever decisions he made with regards to his treatment. Please find out as much information you can about everything to do with this as the better informed one is the better the choices they will be able to make.

Don't give up hope and keep looking for that solution that is best for your dad!

My best wishes to you all,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New Member

I much agree with what Gavin has said.  Specialists disagree with their approaches to treatment and it is important to gather as much information as possible from various physicians.  Don't be afraid to ask each as to how many of these surgeries he/she has performed.
I also agree with Gavin that ultimately your Dad needs to be able to make the decision as to how he wants to proceed.  He does however, needs to be able to make an educated decision and that only can happen with gathering of information.
We have to remember though, that patients can become overwhelmed hence, it might be best for you and your siblings to do much of the legwork and then present your findings to your Dad in a short and easy to understand manner. You might also want to include your Dad's primary care physician.  (Does he have one?) If indeed this doctor is someone your Dad trusts, then he/she may be able to help him understand better.
I am hoping for others to chime in also and share some of their thoughts.
Please stay in touch.  We care.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: New Member

Hi,
I have also had the same tests done. The best test to my knowledge is the PET scan as it can see the most. I am confused as to whether it is in his liver or not. Either I am reading your post wrong or they told you two different things? Mine is in the liver, pancreas and bile duct. I was told I am inoperable and that Cheemo would not help as it would not shrink the tumour and with my sever weight loss could do more harm than good. I have had a permanent metal stent put in. I am doing better now than I was after my initial diagnosis. I am up and about everyday. I did have trouble with pain and then with constipation from the pain meds but now am doing well. My pain meds are hydromorphone and I take lactulose and senekot for the constipation. I also take a sleep aid as I wads having trouble sleeping. I was diagnosed in September. So far so good. At that time they gave me 6-18 months. I am not gaining weight but I am able to maintain my weight. I eat small meals often throughout the day.
Keep in touch
Bonnie

Re: New Member

Hi to all again..

We had a first talk with our dad about the new doctor that thinks that an operation is possible, he is still negative at the momet because all other doctors have said no..and we totally understand him and we fear so much and dont know what is the best decision to take. We went through the ''surgery'' procedure that ended in vain and 42 days later we are again at zero point.. so we just try to get him do the new MRCP and MRI and see how things can go...we are also seeing an oncologist on Monday.

Bonnie, dad has it inside the liver at the connection of the right and the left duct- normally this connection is at the gates of the liver but in dad's case deep inside the liver. Regarding chemo this is what we also have heard from the doctors, that it does not help and secondly that they will not proceed with a chemo without having a biopsy with positive result of cancern.

As already have told dad is in a perfect health condition, with no pain at all and actualy have gained a little weight lately...is it possible that this lasts for a long time? is there a specific period that the symptoms and pain starts? Has any one been placed ''pig tail'' stents? how ofter did you replace them?

Another very good point is that dad is in a very good mood, very optimistic and often says that he has nothing . .he is well aware of the situation from the beggining, he has been informed for everything except the ''time''that doctors have given to us. He has asked us many times though if doctors have given  ''time'' and we told him no, that depends on each person, it can be from months to many years. First of all we dont believe that doctors know when the end will come, i have heard stories of people given 3 months from doctors and lived for 20 years.. secondly since he is feeling good and is in a good mood we dont want to tell him somehting that will make him depress. Do you think that he has the right to know this information?