Topic: Cholangiocarcinoma - same size for past 18 months

Hi friends,
My wife ws diagnozed with central CC in Aug 2006. She has 2 drains inserted to drain bile fluid. Doctors said that as this is very close to the portal vein surgery is not possible and their prognosis was not good.
It is 18 months now and the last CT scan shows that the tumor is sitting there and no change in size at all.
I had requested the Dr.s for another biopsy to reconfirm if it is cancer. They have said it is no use. In all the forums I have read people with CC succumb in 6-12 months.
I am fortunate that my wife is keeping totally normal, though feels tired once in a while due to the bile draining out.
Are there any reported cases of mis-diagnosis? And any one having similar experience of non growing cancer, can share there views and new options available.
Thanks
Ramdev

2 (edited by JeffG Sun, 15 Jun 2008 15:53:38)

Re: Cholangiocarcinoma - same size for past 18 months

Ram dev..... After18 months and no change I would be looking for some different opinions from surgeons.  Also radiation treatment has shown to reduce tumors to allow for surgery.  As far as mis-diagnosis it is possible, although I have not done any extensive research in this area.  If your wife has had no change or mets to other areas of the body in others words clean scans and her tumor markers and blood work don't support the diagnosis and if the the bile itsself dosen't support the diagnosis, I would be getting another opinion(s).  It is possible the tumor is apotosis(dead).  They were able to put in drains , were their any mention of stents.  Ramdev, I don't want to in any way give false hope, but if what you say is true I would be knocking on some doors and asking for referrals to some specialist to confirm what can be done.  I was mis- diagnosis when I had my recurrence. I was told it was a hemigenoma(sp) Blood blister and it turned out to be CC again, that mets every where.  18 Months with no change or mets is quite a puzzle to me. I would definitely check it out as it would be a blessing to see if something else could be done besides external drains.  It is something I would surely check in to.  Whether the possibility of corrective sugery is is a choice due to location of blockage only an expert bile duct surgeon can tell you that.  Wish you and your wife the best on whatever you decide to do. Please do let us know as it would be of great interest to us members of this site.
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Cholangiocarcinoma - same size for past 18 months

Hi Ramdev, as you're looking and researching, I wanted to share that sometimes chemoembolization is done to reduce tumors so that surgery can be performed.  I'm glad your wife is doing so well. I wholeheartedly agree with Jeff on getting another opinion.  You need to know what you're dealing with. 

Carol

Re: Cholangiocarcinoma - same size for past 18 months

Hi,

I had surgery for cc in Feb. 2004, then a recurrence in 2006 which was treated with radiation and Xeloda ending in Dec. 2006, which shrunk the tumors but didn't knock them out. In the 18 months since then, the two small tumors have been stable, with no change and no metastasis-- (knock wood! I go for a CAT scan next month.) So it does sometimes happen.  As many people on these boards have observed, this disease is SO different in different people.

Wishing you all the good luck in the world!

Kristin

Peace, hope, and healing to all!