Welcome and sorry you had to find us. I would suggest sticking with opinions from major cancer centers, as they have the experience with CC others don’t have. There’s only about 2000 cases annually diagnosed in the US, so smaller hospitals and medical centers see cc only rarely. Cleveland Clinic is certainly among the ones I would consider. I’m personally not familiar with TrueBeam STx radiation therapy, but that doesn’t mean much. I was treated at Columbia Presbyterian in NYC (nowhere near where I live) because of their reputation. Has your husband had an ERCP (special endoscopy) done yet? If not, I would expect Cleveland Clinic will want to do one.
Try to stay positive and focused on coming up with a treatment plan and always be prepared to get additional opinions if your not comfortable.
My hubby is 63. It is intrahepatic cc Labs are : AFP 49, AP211, Bili 1.2, AST 96 and ALT 110.
Ca19-9 – 154. he hasn’t been staged yet, but with the amount of metastasis present, I’m not optimistic. So far only the R lobe of liver has lesions (besides the metastatic areas). If we can keep the rest of the liver clear and destroy the other stuff, they say they’ll do a R liver resection. It sounds strange to be more concerned about the metastasis than the primary. There is a center very close to me that’s offering TrueBeam STx. Any input on that procedure?
I am not a doctor ,I am a patient just like your husband and being a nurse and know nothing about CC until now is nothing wrong with it; you ask 10 doctors(GP) now and some of them may even don’t know how to pronounce cholangiocarcinoma.So please do not be ashamed but rather you should feel you are in the right profession to help your love ones.
If I may ask, is it intrahepatic(that is the primary tumor start inside the liver) CC or ductal(Hilar or near the small intestine) cc;it makes a difference in treatment plans; also if you can tell me about his lab value of ALK phos,AST and ALT;total bilirubin;CEA and CA19-9. did they tell you the stage of the cholangiocarcinoma?
Multiple lesions in the liver may preclude re-section;5cm is not consider a big tumor but multiple (more than 4 or 5) leisons will put your husband in stage 2 or 3 depends on the locations of the lesions;lymph node involvement also a factor ;but if the lesions are away from the portal vein and main arteries surgery will be possible even though with more than 3 or 4 lesions.The health and age are also factors in determining the course of treatment.
Currently there are no systemic therapy are 100% effective but other options such as PDT,SBRT for ductal cc and RFA,Chemoembo for intrahepatic cc are available from radiology.
Bring a recorder to record the conversations tomorrow and I will help you if you need me.