Topic: Where is the best place to go for treatment?

My 79 year old father was just diagnosed with stage 3B cholangiocarcinoma.  Surgery is not an option because the tumors is lying on blood vessels and is too risky.   It is the size of a tennis ball so I am told.  Does anyone know where the best place in the country or world is for this tyoe of cancer?  Sloane? Mayo Clinic?  u of Texa? U of Washington?
We are now looking at the oncology route.  Any suggestions would be appreciated.

Re: Where is the best place to go for treatment?

One of the things I have learned about cc, is that everyone is in the dark. There seems to be an agreement that if the tumour is only in the bile duct then a resection is the best option. Otherwise we are all guessing.

CC is a rare disease and there is little incentive for the pharmaceutical companies to invest in drugs that are specifically for cc. Most of the drugs used for cc are primarily used with other cancers and there is little evidence about their effficacy for cc.

The standard seems to be gemcitabane but if you read the different regimes that people are on, you will see that many other drugs are used, either singly or in combination.  Even so the difference that chemo makes is limited and my husband and I ask ourselves if the side effects are worth the gain. ( a couple of months??) Gemcitane is apparently 'well tolerated' and has few side effects but other drugs oxaliplatin Cisplatin apparently have quite severe side effects.

My oncologist said that cisplatin was well tolerated but the nurse on the trial told us to avoid it if possible. Having said that it may work for your father, since all of these drugs have different effects on different people.

Speaking personally and I hope I am not speaking out of turn, I would question whether or not chemo with the side effects they may have, plus regular hospital  visits with all the stress that means, is the right route for a 79 year old man.

I hope you find the solution you are looking for and I wish you and your father all the best.

Re: Where is the best place to go for treatment?

I am sorry to hear about your father.  I was told my tumors were inoperable and they are now trying to shrink them with chemo so I can hopefully become a surgical candidate sometime in the near future.  I am very happy with my team of doctors here in Houston at M.D. Anderson.  I was told that MDACC has treated hundreds of cc patients, which gives me comfort b/c we are few and far between.  I have no other experiences to compare my own to, but I am lucky enough to live in Houston and only about 30 minutes away from MD Anderson.  There are other members of this site that can hopefully give you some insight from their hospitals of treatment as well. 

Good luck, I hope I was of some help.

Re: Where is the best place to go for treatment?

Hi Kelly,

In your experience at MD Anderson, is there 1 or 2 oncologists that are the CC specialists?  We have been considering starting a relationship with a doctor there in case we need some 2nd opinions (or 4th opinions I guess at this point) later down the line.  At this point, I'd just be looking at the website to come up with names so would love any recommendations.

Stay strong!

-Hans

Re: Where is the best place to go for treatment?

So sorry about your father. My husband who is 73 went thru a successful (so far) Whipple Surgery  October 3rd.  His Bile duct cancer was in the valve and to the head of the pancreas. The DR told us at the time that  chemo and radiation were NOT good options as they have a one in a 4% chance of survival where surgery put the survival at 40%.  So to us there was no option.
I don't think any one place is the best as I have seen both  heroic and disastrous stories on the Web. Its sad to say but its the luck of the draw. We were in Milwaukee visiting and
we had to proceed quickly as he was to illl to travel. We lucked out! Our DR was one of two in the area who do the Whipple.  Since coming home to Phoenix we have found a wonderful DR at Banner Good Samaritan who is also Director of Liver Transplants. And he has done the Whipple. If we need services again of a surgeon I would look no further, he is truly wonderful.
Good luck and prayers are with you.

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: Where is the best place to go for treatment?

My prayers are with you and your family.  My father just recently had a liver resection at Mt. Sinai in New York. His doctor is Dr. Schwartz.  He is truly amazing.  His oncologist is Dr. Sung, again another truly amazing doctor.  They have been extremely helpful, patient, and caring with my father and family.  He had an aggressive chemo prior to the resection that did indeed shrink his tumors.  His surgery was on Feb. 6th and things seem to be okay.  However, he is having issues with fluid buildup now which is somewhat of a concern.  They are in the beginning stages of finding the reason behind it. 
I would highly recommend Mt. Sinai and the above doctors. They were brilliant!!!!
Take care,
joy

Re: Where is the best place to go for treatment?

I met with Dr. Schwartz and his colleague Dr. Royaie, I agree, they are the best out there when it comes to liver surgery!  Mt. Sinai also gave me excellent care when I was there