1 (edited by sargis5 Tue, 18 Mar 2014 11:27:50)

Topic: Hello

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

Re: Hello

Dan, I'm sorry about your father's and your extended family's journey. You've found a great place for support and advice here. I started my own similar journey with CC this past December.

I had a combined ERCP and EUS procedure at the Mayo Clinic in late December after an MRCP at my local hospital showed a mass and biliary dilation. During that procedure they installed two stents to get my bile flowing again and also attempted to get some cells via "brushing" so they could confirm CC via pathology. The brushing didn't yield any cells so we went off the imaging and symptoms to conclude CC. You may not get physical/pathological proof.

I have to agree with your statement "this is a bad illness for a 56 year old let alone an 86 year old". I had successful surgery to resect the tumor in mid January at Mayo. I'm only 47 and otherwise extremely healthy. Recovery from my surgery was a lot more difficult than I expected, maybe because I had two surgeries in 24 hours. It's 8.5 weeks post-op now and I am just back to work yesterday and starting to feel somewhat normal.

I will be thinking of you, your father, and the rest of your family at this difficult time.

The more we all share and care, the better.

-Matt

Re: Hello

Dear Dan, welcome to our elite family/club but sorry you had to find us. I get so upset when someone the age of your  Father gets to this ripe age and bingo gets hit with something like this. Your head must be swimming with all the different opinions. My husband had a Whipple when he was 73. It is a huge surgery or as our surgeon told us the largest to the human body however, not life threatening like heart surgery would be. Have you asked any of the ONCs what kind of Palliative care they would offer?
You post all you want that is why we are here and I do like the terminology 'brain dump'. Please let us know what happens as we truly care.

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: Hello

Hi Dan,

Welcome to the site. Sorry that you had to find us all here and I'm sorry to hear what your dad is going through right now. He certainly has been through a lot up till now but I am glad that you have joined us here as you're in the best place for support and help and I know that you will get lots of both from everyone here.

Yes you are right in that this is a tough fight to be in for a 56 year old and even tougher for an 86 year old. My dad was only 64 when he got his diagnosis back in 2008 and he chose quality of life over quantity for the time that he had left and accordingly that helped him decide on what treatment to go for. And as you experiencing right now, this can also be a tough disease sometimes to accurately diagnose.

I do hope that your dad is able to go back to Stanford today and is able to have that scan, hopefully that will give you al more answers and options too. Please let us know how that goes. And please, no apologies are ever needed either for your brain dump as you put it! You go ahead and post as much and as often as you want to. We are all here for you and will help as best we can. My fingers are crossed for your dad and let us kno how everything goes.

My best wishes to you and your dad,

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: Hello

Dan......welcome.  I am confused:  the pathology report at UPMC determined it to be Cholangiocarcinoma.  Am I correct in thinking that Stanford questions the pathologist report?  A lung biopsy is scheduled to determine the correct diagnoses?  Dan, you might want to get in touch with UCSF and see if they can take a look at the reports as well. In regards to the chills - we call it tumor fever.  The only thing I found helpful for my husband was to wrap him in blankets at onset of the chills and to wait it out. 
Please keep us posted.
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: Hello

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"?

Re: Hello

Dan -
Don't ever apologize when dealing with any of this stuff. I know that it can be very difficult to diagnosis correctly and brushings done with ERCP cane be negative over half of the time (I think that's about right). I know for my husband we had MRCP, CT scans and Ultrasound prior to surgery and they based the diagnosis only on the symptoms and the 3 cm tumor they could see. We didn't know it was cc until the biopsy report came back after surgery.

Glad that your dad was able to have the stereotactic radiations and seems to be doing well. I will keep my fingers crossed for August.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Hello

Thank you so much, Kris.

Re: Hello

Dan....I can only echo Kris in reiterating that this cancer can be difficult to diagnose.  You did everything right by obtaining an additional, professional opinion.
Fingers are crossed for good news on the August visit.
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