Intrahepatic biliary injuries associated with RFA

Thanks, Lainy. Did I tell you that my son liked you very much also and that he enjoyed our night out? And, here I thought that he was polite in saying so but, later that evening I overhead him talking about it to a friend. Guess, we still are good company.

Eli….going back to your question as to how long our appointment lasted – it never seemed quite long enough and it always left some questions unanswered, but only those we did not think of in the first place.
Many years ago when my youngest son was diagnosed with a serious heart condition (he had two corrective surgeries and is doing exceptionally well) our cardiologist welcomed my inquisitive questions to which always he responded in a kind and caring manner.
One day though he turned to me with a smile and said: “Mrs. Schwartz, it took many years of training for me to obtain this knowledge – in no way am I able to pass on to you everything I have learned.” I appreciated that.
Like you I need to understand, in depths, what it is I am dealing with so that I can accept and go along with what is presented to me. But I also have come to realize that there are times when simply that is not possible.
We live in an age where we are encouraged to become strong advocates and yet when we take on this role, we come to realize that always we are left with unanswered questions or that we don’t have the knowledge to ask the questions in the first place.
What I am trying to convey to you is that it is highly unlikely for any of us to become experts in the field of Cholangiocarcinoma however; given the vast amount of information available to us we are in a much better position than we had been as little as five years ago.
That is the reason I believe that support groups such as ours are immensely popular because they give us the opportunity to share information (amongst many other things) and they allow us to interact, agree, and disagree with statements made by others. As they say: “Knowledge is Power.” That power though brings with it a certain amount of limitations in that we may be misinformed, under informed, or even wrongly informed. If we can’t assimilate the given information then we are apt to be misinformed. So, it is a heck of a place to be in.
I also wanted to comment on your last statement in regards to your misgiving of not being everything you believe you should be to your wife. I strongly disagree with you because; what you are doing is immensely helpful to her. She knows that a fighter is by her side. You are a warrior.

All my best wishes,
Marion

Good Morning Percy. Yes, my gut served me well. I always say I graduated from GUT101!!!!! And you are so right about God’s intervention. Teddy used to say to the Surgeon, “I prayed for God’s hands to come through yours!”. OK, now I am getting sentimental but Teddy NEVER prayed for himself. He prayed that we would all stay strong. Sorry, having a Teddy moment!

Hi Percy! I think we need to go to sleep now! There was nothing on TV tonight!

Eli, I am trying to remember back when Teddy was told he was to have a Whipple. I honestly believe that most of us don’t have the time to research nor is that paramount on our minds compared to the shock we have just been given. We were out of town visiting our children in Milwaukee. I had no time to research a Surgeon, nor to look up facts. Teddy was in such dire straights that we only had 4 days from DX to surgery. We totally lucked out on our Surgeon, he was the best. Unfortunately Teddy had to go through it twice, first was aborted after 4 hours, with a double e coli infection in between the 2 surgeries. Our 2 week visit turned in to 3 months! I would venture a guess that MOST of our members do not do radical research, the brain is already on over load with the shocking news. This does not make them bad advocates or bad patients. It’s just that life has a lot of gray areas not all black and white. I do know that 4 prominent Doctors all agreed to no chemo/rad not only because of his clear margins but because they felt at the time it would only put him through more that in the end would not matter. They were right. A year ago July when we got the ‘final’ words we went back to see the kids in Milwaukee and it was very important to Teddy to thank the original surgeon. He did and the Surgeon said to him, “I can tell you now Teddy, I didn’t think you would make the first year”. So glad he never told us that.
All the research is wonderful and much appreciated but in the end this CC is such a puzzle that there are few members who have everything happen the same way. That makes it even harder to study the studies.

Hi,eli.
Well I can say one thing about you, you make me work harder,you make me study more about treatments and alternatives for CCA; for this I am thankful. Like Gavin,your devotion is well appreciated by all of us and especially me.
I do not agree with the study from the point of view as a CCA patient. it seems to me that the study is more concern about the damage of the bile ducts by RFA than the more positive results that RFA can provide to intrahepatic CCA patients like me . Dose the study mean that bile duct cancer patient,like me, should not have RFA procedure because it will damage our bile ducts in the liver? Liver can regenerate and so will be the bile ducts. This is not a good study and as always everyone should know that not all the studies are equal of importance.
Even the study itself concluded the 1.8% of adverse reaction of the RFA procedure and the damage to the bile ducts will not affect the long term survival .
God bless.