I am glad I found this site as others are not so active. I have already made several posts, so I guess I should introduce myself here as well :-)
I have to admit I am feeling quite a bit of guilt. My dad was diagnosed with both gall bladder and bile duct cancer (we don't know which was first). I have been searching and reading about both and they seem to be similar -- at least the treatment and the aggressiveness. His surgery was a little less than a year ago. They took his gall bladder, part of his bile duct (he didn't have the Whipple) and part of his liver. His surgeon said he would have liked to take more of his liver, but it would have killed him. His recovery went well. The doctor wanted him to have radiation and chemo as a precaustion. He finished his last round of chemo toward the end of June. His test results showed everything looked good. He went back in October for an MRI and they found something in his liver. He had a PET scan and then a biopsy. The surgeon said he couldn't operate and sent all of his records to his Oncologist. The oncologist gave him nine months< My dad asked if he did more chemo would it help extend his life. Doctor shrugged and said, "possibly."
I fell into a false sense of security and didn't keep researching and looking for answers. Now he is scheduled to start cisplatin next week. Something in my GUT tells me that we need to get another opinion.
I work in the health care industry and I talked with the head of our medical group. He thought I was on the right path by collecting information so that I could present options to my dad. He did warn me that if he decides not to pursue them, I need to respect that -- which I will. I think I just feel like I have to do all I can to help him. When I was a kid, he was relentless about pursuing solutions. He never gave up and his determination was admirable.
I did research and found a doctor who treats a large number of biliary cancers at the Cleveland Clinic -- Robert Pelley. I was afraid it would be difficult to get in to see him so I called his office and they informed me it usually takes two weeks. I wanted to make sure it was a possibility before I recommended him. Now I am conflicted because I just read the posts about UH and the Cleveland Clinic. The Clinic posts were so negative. My dad is currently at UH -- the Ireland Cancer Center. I have heard that it's worth it to get another opinion from UH -- got the names of two doctors there who also see a large number of patients with this disease.
I don't really have a clear picture of my dad's situation. My brother is the doctor in the family, but he doesn't want to talk about this. I did ask my parents for their permission to talk to his oncologist, but I don't think I can if I don't get some legal paperwork becuase of HIPAA.
Anyway, I am really conflicted. I took my parents to Disney on Ice today and my dad just didn't look good. He was so quite and had that far off look in his eyes. He had been doing so well over the summer -- he was just about back to his old self. It just broke my heart and I can't stop crying every time I think of how he looked. I know he doesn't like the priest at his church, so I am at a loss in terms of someone to help his spirit. My mom said he is really depressed. I worry about my mom as well.
I am going over there tomorrow morning to talk to them about the research I have collected. Regardless of whether it's the Clinic or UH or even Cancer Centers of America, reading the posts here, I do think he should get a second and/or third opinion. My mom doesn't want to go anywhere else unless there is significant proof of a better outcome.
I am going to do a little research on Mayo. I have seen that come up a lot -- maybe Pittsburgh (That's not too far away for them) and possibly Ohio State?
I am just worried because he starts chemo on Thursday and I have been told that he should hold off on the chemo if he is going to get another opinion. Will waiting a couple of weeks be bad given the aggressive nature of this cancer?
Thank you so much for creating this site and to everyone else for being so actively involved in posting.