My 67 year old mother was diagnosed with an unresectable klatkins tumor (blocking the left and partially blocking the right duct). The doctor said that transplant was not really an option, and that the only place that does it is the Mayo. The only thing he offered was chemo and possibly radiation, and the chemo won't shrink the tumor enough to operate.
The tumor is only 4 cm. She is being treated at Sloan Kettering and was an emergency admit there for a bilirubin over 20. They put in a stent and external catheter and sent her home after 8 days. 6 days later we got the diagnosis, which was a surprise since we thought that it was liver cancer and that the doctor was going to discuss things like a biopsy.
Her catheter keeps leaking and they want to put in a metal stent (sounds a bit like a channel from the doctor's description). I looked at the USC website and they said don't go metal if you want to have it removed. However, the bag and leakage is already depressing her. And I find changing the dressing very scary.
I guess my questions are:
Is Sloan the place to be? If not, where are the bile duct experts? Is a second opinion wothwhile? Why are some of these tumors inoperable? Are transplants viable (she has 4 kids and 2 brothers)? Any views on the stenting? Any views on alternative treatments?
She really wants to live because she is the primary care-giver to her 5 year old granddaughter. But qulaity of life is very important to her too.
Any ideas would be much appreciated.
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