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(8 replies, posted in Introductions!)

Thank you so much, Kris.

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(8 replies, posted in Introductions!)

Delayed response but thank you all for your input.   I have been soo busy, caring for my Dad, supporting my Mom plus being married, raising three teen boys and oh yeah, I have a wife too.

A lot has changed since I first posted.  It turns out that both the local GI and the CPMC in San Francisco GI mis-diagnosed by Dad.   He actually had a small tumor which pressed up against the bile duct, exhibiting bile duct cancer symptoms.

He underwent the stereotactic radiosurgery for both the lung and the pancreatic tumor between May 16 thru 23.   He is now six weeks into recovery.   It is still uncertain whether he is cured or not.   We will find out on August 14 when we return to Stanford.  We are cautiously optimistic.

Very curious, has anybody ever experienced a similar "mis-diagnosis"?

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(8 replies, posted in Introductions!)

Hi.   My name is Dan.

My 86 year old father (his name is Sam) is currently being treated for cholangiocarcinoma.  Well, I should say that every indication is that is what he has. 

Since October of last year we have been on quite a journey.    In late October he was at a dermatology appointment here in his hometown, Modesto , CA.   The dermatologist observed that he was jaundiced.   He had been having severe unexplainable chills.   He then got referred to a gastroenterologist who gave him his first endoscopy on October 31.   The doctor observed a stricture in his bile duct and inserted a stent.   A biopsy of the stricture proved inconclusive.  My Dad felt good for a few days but on November 11, he woke up with severe chills again.   We admitted him to the local ER.   They took a CT scan and determined that the stent had failed, so they give him another endoscopy and inserted a new stent.   Another biopsy was taken which was inconclusive.   The decision was made by his gastroenterologist to have him do yet another endoscopy at California Pacific Medical Center in San Francisco, where they supposedly have more advanced equipment for the purpose of taking biopsies and getting more conclusive results.   This third endoscopy took place on November 18 (yes, three endoscopies in less than three weeks!).   Yet again, the biopsy proved inconclusive.   However, the third stent worked fairly well for him.    After that he experienced chills ONLY in the evenings, would warm up with a hot shower then sure enough, the next evening he would get chilled again.    We returned to CPMC in SF for a fourth endoscopy on January 16 of this year.   They took yet another biopsy and inserted two plastic stents.   This time according to the pathology department at CPMC the biopsy came back positive for cholangiocarcinoma.   Great!  At least we finally had a diagnosis!

However, both his gastroenterologists in Modesto and San Francisco encouraged him to undergo a Whipple Procedure.    Considering his age and general health condition we (my Dad, Mom, sister and brother) all feel that is simply not an option.   Certainly it would likely eradicate the cancer but his chance of recovering from this brutal procedure is slim to none.   Also, chemotherapy would be a tough road for him.

We started doing some research and found out about stereotactic radiosurgery.   We decided to get him referred to Stanford Medical Center.    The first thing we did was go before a tumor board on February 26 at Stanford.  At the time they determined that stereotactic radiosurgery would be a viable option for him.   However, leading up to his follow-up appointment  on March 6, Stanford’s radiology doctor had us follow up with his medical records from when he underwent radiation therapy for prostate cancer in early 2010.   Because a) of ulcers that were generated as a result of that treatment and b) the determination by the radiology doctor that the location of the bile duct stricture could not be definitively identified, he is now recommending IMRT radiation.   Another disconcerting thing that the Stanford doctor told us is that Stanford radiology cannot definitively identify the stricture as being cholangiocarcinoma.   Again, everything else points to it .. EXCEPT for physical proof.    I know, we’re kind of confused too considering the diagnosis from the gastro at CPMC \-:

From a tri-phasic CT Scan that the Stanford doctor ordered, another complication has developed.  He also has a lesion in the upper part of one of his lungs.   So far this condition is unsymptomatic.  He will be getting a biopsy for that a week from this Friday (at Stanford) to find out if it’s related to the bile duct problem, but I digress.

Today, I will be taking him back to Stanford for a “Pancreas Protocol CT Scan” scheduled for 6:30 this evening.    The hope is that the location of the stricture can be better identified such that stereotactic radiosurgery can again be considered as an option.   He has had a bad couple of days, so we hope that we can make the trip.   It will be a “game time” decision.

Meanwhile, I really see my Dad’s health continuing to worsen.  He’s a fighter but this is a bad illness for a 56 year old let alone an 86 year old.

Thanks for indulging me with this “brain dump”.

Dan Sargis