Topic: Communication issues
My 74 year old mother has been diagnosed with CC. I'm going to try to give as many of the specifics as I know, but I'm frankly not clear on a lot of the facts. I do know that the doctors (Vanderbilt) have said that they cannot take out the tumor that is around her bile duct. It has also apparently attached to a nearby artery. We have also confirmed this week that the lymph nodes (I'm not sure specifically which ones) are also affected by the cancer.
Symptoms - mom is still pretty jaundiced, despite a stent being inserted into her bile duct that we are told is working. Last I heard on her bilirubin count, it was around 7 (that was a week ago). She is bloated, feels nauseated often, really hasn't eaten much over the course of the past month. She has continued to get weaker and weaker, to the point where she cannot walk across the room without assistance. Because of her weakness, the doctors have said they will not attempt any chemo treatments, which is the only course of action that they believe is possible at this point.
She also had her kidneys stop working a couple weeks ago. This was caused by a blockage of some sort around her bladder area. No one has confirmed what really caused the blockage - I suspect that it was from her liver being enlarged from before they got a stent in her bile duct that was effective. My father is convinced that it is a tumor (maybe a 2nd one??), but I don't think that any of the doctors have told him this definitively. Ultimately they relieved the kidney issue with stents directly into her kidneys (both of them) from her back. So her kidneys are currently draining through those tubes and not through her bladder.
She is currently in a rehab facility trying to work on getting her strength back up in order to be able to get the chemo treatments. But it just seems that this is a place for her to be "out of sight" from the doctors at Vandy. Getting information from them has been difficult - no one seems to give us the complete story. We try to call the oncologist, leave messages, and get no response. I would like to get my father to seek out other opinions, but I feel like we really haven't received a complete FIRST opinion. Meanwhile, my mother seems to be more and more discouraged and resigning herself to the fact that there is nothing that can be done.
Mom started noticing something was wrong maybe 10 weeks ago. Was diagnosed between 4-6 weeks ago. And has been to sick to be at home for the past 3 weeks. This has been a very fast change, particularly for someone who has never been sick in her life until 10 weeks ago. I think the speed and magnitude of the changes for her have added to the discouragement.
I live in Cleveland, so I'm not able to be there much to help my dad be more aggressive with reaching the Vandy doctors and having them communicate with us effectively when we do reach them. I have tracked down the name and number of the doctor here in Cleveland that specializes in CC. I would love to try to get this doctor involved somehow and have another opinion on a plan forward. However, I'm not sure that either of my parents are really interested in a 2nd opinion. They seem resigned to the fact that there is nothing that can be done from where we are at the moment anyway. I would love to hear anything that anyone can add that could maybe give them some hope that there are other options and that we should be seeking out much more information that we currently have.
Thanks, in advance, for any insights or encouragement you can provide.