Hans, first, thanks for starting this conversation! This is an important one! You and I are of the same mind regarding the difficulty of conducting an ongoing conversation with one's healthcare provider about treatment options as we learn more about the diagnosis and the pros and cons of treatment. For me, this is particularly true when the diagnosis and treatment rachets upward on the 'pucker factor scale', Here are my ramblings on the subject in no particular order.
Since I'm an optimist, I'm going to put my Pollyanna conclusion first:
- I think I can facilitate the conversations I need to have. I did it successfully with my surgeon and RO. I had to realized its not the normal conversation that most patients and doctors have for several reasons (See below). Its up to me to facilitate the conversation and I mean no slight to doctors.
- Reason 1: I'm not the normal patient. I'm a PIA because I ask a lot of questions. When I get initial answers I dig into the research so I understand the options better. That usually leads to more questions. Depending on the doctor's perspective and workload, that makes me either 'interesting' or a PIA.
-Reason #2: Most patients don't behave that way. Most patients want the doctor to lay out the diagnosis and treatment options and then tell them what they should do. In my opinion, that is 90% of the patient population.
- Reason #3: In the last 20 years doctors have been taught to conduct 'shared-decision-making' consultations. At its most basic level that translates to: Give the patients the facts. Answer the patient's questions. Don't tell them what to do. Its the patient's job to decide.
- Personal opinion: unless the doctor is a unicorn communicator, that means many consultations are what I call "Dragnet" consultations: "Just the facts, mam. Just the facts." (For those under 65 reading this, google Dragnet.)
- Personal observation: There are unicorn doctors that listen well, make sure they understand things from the patient's perspective, are empathetic, make every attempt to answer patients questions, and are excellent communicators. I'm more likely to find these people at centers of excellence, but not every doctor that has provided care for me at a COE is a unicorn communicator.
- Conclusion: To make me feel comfortable moving forward with courses of treatment, I need to very politely request additional consultations with my doctors, acknowledge that I may have more questions than the average patient, and express willingness to pay what-ever additional consultation fees the doctor and institution thinks appropriate for the privilege of extra time with the doctor.
That approach worked very well with a second consultation with my surgeon. I started by saying: So I don't impose on your time, let me know what time has been blocked for our talk and I'll keep our discussion shorter than that. To cut the the chase, we had a great conversation and I left with all my surgery related questions answered. It also worked well for a second consultation with my RO. Both allowed me to go down rabbit holes with questions about treatment alternatives and I left the conversations better informed.

Signed: GSD-PIA!