What next?

In August of this year, after presenting symptoms of fatigue, shoulder pain, and loss of appetite (no jaundice however), my 81 year old father went to see his doctor. After being referred from his GP to a gastroenterologist, his liver panel showed elevated ALP levels and a subsequent CT scan showed he had a 7mm tumor on the left lobe of his liver. After consulting with a surgeon who specializes in biliary cancers, he felt he was a viable candidate for resection of the entire lobe.

The day of the surgery, we knew we were in trouble when, one hour after the operation began, a nurse called us into a private conference room so that the surgeon could speak with us. He informed us that he had discovered the primary tumor had fused itself to the stomach. In addition, there were two very small tumors on his right lobe. The pathology done during surgery indicated this to be colangiocarcinoma. (Intrahepatic.) Because of what he saw, he opted to abort the surgery.

Since that time, he has been extremely slow to recover from surgery. His overall physical health has declined precipitously, he has lost much of his mobility (which he is valiantly trying to regain despite weakness and pain), has no appetite (likely from the tumor pressed against his stomach), and is now experiencing serious bladder complications. (Due to age, as well as the toll surgery and the cancer has taken on his body.) My dad is willing to fight this and is one of the strongest willed people I have ever known, but has begun to feel the cards are stacked against him.

I understand that at this point, there is no cure for the cancer and that all treatment now is palliative. Understanding this, I have used the analogy that, as with chess, as long as you still have a move left you have not lost the game. So never surrender until checkmate.

The next stage is scheduled to be chemo. (Likely gemcitabine I believe.) The oncologist wants to start chemo as soon as he “recovers from surgery” but emphasized that it really needs to begin in the next couple of weeks. However, his one physician, who has known him for over a dozen years, quietly confided that, based on what he is witnessing with my dad’s physical decline, the chemo might do him in since “his reserves are gone”.

My dad turns to me for guidance with a lot of this. While I am not a physician, like many of you, I have sadly made learning as much as I can about CC as quickly as I can a key part of my life’s work. So at least I have been able to question doctors and keep my dad somewhat informed of what is going on.

My question to those who have been through this is, when and how do we know when it’s time to say “enough”? I know to my dad, quality far outweighs quantity with whatever time he has left. I do not want to see my dad’s health compromised further by undergoing chemo if it won’t improve his well-being, even short term. On the other side, if it will help alleviate any of his symptoms, I believe he’s be willing to give it a shot.

So I am not asking for answers per se, just insight from those who have been down this path already.