Topic: What do I expect

Hello all,

First of all wonderful site! Thanks.

My 70yr old  mom had a CT Scan and ERCP done this week. The biopsy results have not come back but the gastroenterologist is pretty sure the diagnosis is cholangiocarcinoma. He says the tumor is 5 cm, in the bile duct. He has temporarily stented one of the ducts.

I am sure over the next few weeks we will be presented with an array of options and decisions. I have been reading the postings on this forum and had a few questions:

a. My mom has a form of myositis called Inclusion Body Myositis. The gastro doc says that cholangiocarcinoma has been associated with many myopathies. Is there anyone on the forum with the same condition?

b. Her myositis makes it difficult for her to walk (legs, thighs are weak). She is slowly losing strength in her arms also. Given this, any opinions on how it affects treatment options?

c. We are seeing docs at Stanford. What are the best known locations for treatment of this condition?

Thanks for your responses. God bless you all.

Re: What do I expect

Hi Sarah,

I can't answer all your questions, but will try to answer some.  It seems that  MD Anderson, Sloan Kettering and Mayo Clinic seem to handle the most cases of cholangiocarcinoma.  They don't seem to treat it the same, but seem to see more people with it.  I would suggest that no matter what the doctor says that you make sure to get a second opinion. 

There is not a lot of evidence pointing to things that work, but it seems that there are more people getting this kind of cancer now.  There are new chemo drugs coming out all the time, as well as other kinds of treatments.  I think it is important to keep yourself and your mom informed about all the options.  That's why I love this site.  It gives us a chance to share what we are learning and to help each other.

I don't know much about the myositis.  I hope you can find the help that you need.  Good luck and keep us posted.

Kelley

Re: What do I expect

Hi Sarah,

If you are at Stanford now, the easiest place to get a 2nd opinion would be UCSF.  The doctors at Stanford may be able to give you a name of a doctor there to contact.  Did you see Dr. Fisher at Stanford?

-Hans

Re: What do I expect

Thanks for the tips. My mother is seeing Dr. Norton at Stanford to eval for surgery and next week she is seeing the GI oncology board. I am assuming Dr. Fisher is on the board, but I will call them up to confirm.

Any doc name recommendations at UCSF?

Will keep all posted. Thanks.

Re: What do I expect

We met with Dr. Andrew Ko at UCSF.  He is an oncologist and was recommended by Dr. Fisher (Dr. Ko actually did his residency and/or fellowship at Stanford).  Also Dr. Bergland (sp?) was another name he recommended among the oncologists at UCSF.

Good luck!

-Hans

Re: What do I expect

Dr. Venook is another option at UCSF he trained our oncologist and has a lot of experience in Cholangio.

Re: What do I expect

Anyone engage with Dr. Nancy Asher at UCSF or Dr. Peter Norton at Stanford?

Thanks.