For the same presentation I mentioned earlier, how well did your or your loved one's physician(s) align the treatment goals with what the patient (or you) desired?
Did you have actual conversations?
Did the doctor ask what your goals were?
Did you understand the treatment wasn't curative?
Thank you in advance. I'm working your responses directly into my presentation!
Love, Andrea
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DancingEyes63 Curly_Girl bwpickard Wifey2021 Joschua Sschiltz pussycat66 PJDavies Dadhaslivercancer
Though we had a very bad experience with the GI MD with surveillance once cirrhosis was identified which missed opportunity for early diagnosis of HCC, our oncologist and interventional radiologist were both wonderful with taking time to discuss treatment options with us and each other. They brought up options and always had the next plan in mind and were open to discussing treatments we also brought up. They were both clear treatments were to prolong quality and quantity of life, not to cure the cancer but when my husband was responding to treatments, they both were encouraging though realistic and both were respectful of his goals. MRI's/CT scans were done every 2 months and labs were drawn at least monthly, and we reviewed results of both and went over diagnostic scans with the interventional radiologist in detail. If issues/side effects arose between appointments, we didn't hesitate to call and both were very responsive. Although we don't live where there's an NCI designated cancer treatment center, and my husband didn't want to waste his time traveling to one, we truly were blessed with excellent physicians who operated as a team during his 27 months of treatment. Bonnie
Thank you for sharing! 💙
These are excellent questions. I wish I'd known to ask them or consider them prior to all of Jimmy's treatments. Unfortunately our oncologist wasn't very good at discussing treatment options. Basically just told us what he was going to do. I've heard since that he treats very aggressively. In some situations that may be appropriate but not when the patient already has a liver full of Cirrhosis. In fact, one oncologist suggested that we didn't do anything because of that. When we went for a second opinion, we got the oncologist that threw everything but the kitchen sink at him instead as far as treatment.
Our conversation consisted of how his tumor markers were doing and that if he didn't continue treatment he would be dead in a few weeks. Of course, Jimmy actually lived almost a year after stopping treatment.
The doctor didn't ask anything, he told instead. Usually the visits were so hurried that you couldn't remember what you wanted to talk to him about. It was an awful experience that I hope others do not go through.
Doctors need to remember that it is the patient's life not theirs and do what the patient wants.
Sharon ❤️
Thank you for sharing! 💙
Dave's treatment was first through a VA hospital, then he was switched to a closer hospital that worked with the VA through their Community Care program. (This saved us from 4 hour round-trip visits to the closest VA hospital that offered oncology.) Just wanted to put that out there - we were very limited in our options because we could not afford to go outside the VA.
Dave worked with a few different doctors and NPs. They didn't start the conversation by asking what his goals were, but as treatment went along he began to insist on a few things and they were open to changing things to accommodate his wishes. For instance, once things went south he had ascites all the time and was going weekly to the hospital to be drained. He asked for a drain to be placed; the doctor told him it would not be there long but he did go ahead and do it. (Dave had it until he died.) He was also insistent when his side effects from Nexavar became severe and they wanted him to stay on it. He told them he had no quality of life, and that made them sit up, listen, and change his chemo.
We never asked and were never told "you have xx amount of time to live." (And I'm glad, I don't think that is helpful at all.) Although we knew it, they didn't make a huge deal out of the fact that his treatments weren't curative, and I also am thankful for that. We didn't want negativity and "you are dying and this is not going to cure you" kind of talk. We knew it was palliative, but their attitude was upbeat and they focused on 'stable' - stable scan results, side effects, etc. That helped us emotionally.
We appreciated that the hospital he used for most of his treatment never rushed us. They calmly listened to questions and concerns, and we felt seen and heard.
My only complaint was at the end, when Dave had the second Y-90 (which I believe was done incorrectly and he was given a massive dose of radiation in error). He developed radiation-induced hepatitis, and nobody was honest about how serious it was. Even as his test results got worse and worse, they felt he would recover. I believed them, and was so blindsided when he died - it sounds crazy to say, because I knew his cancer was incurable, but they were too relentlessly positive at this point. I had no clue how serious the hepatitis really was and was not able to prepare myself emotionally.
Dave's birthday is this Friday - he would have been 68. If he were here, he would tell everyone to push for what they need!
Thank you for sharing! 💙
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