Did your most recent meeting with your urologist, radiation oncologist, or medical oncologist meet the standards of Shared Decision-making?

[Darryl]

Did your most recent meeting with your urologist, radiation oncologist, or medical oncologist meet the standards of "Shared Decision-making?" As best as you can remember, please discuss after reading these three primary components to shared decision-making:

1. Clear, Accessible Information

Your doctor presents comprehensive information about the diagnosis, treatment options, risks, and potential outcomes in simple language and asks if you understand.

2. Patient Values Assessment

Your doctor asks about your values, lifestyle, and priorities related to treatment.

3. Two-Way Dialogue

Your doctor encourages you to ask questions and express your concerns.

Thank you!

[Wgly]

to mine they are more like Rules for Care

[Tall_Allen]

Here's a good case study about how the doctor's ego can get in the way of shared decision-making.

Recently, I met with a patient for a second opinion with an RO. It was a great meeting! The RO pulled up imaging studies on a computer and showed the patient. He also discussed several options with the pros and cons of each. We walked out of the meeting with a plan we felt good about. The second RO (#2) works at the same hospital as the first RO (#1) (a mistake with hindsight! But unavoidable because of the patient's insurance). We agreed that #2 would tell #1.

The following week, #2 said he met with #1 and changed his mind. We set up a meeting with both for later that week. At the meeting, #2 didn't say a word. It became obvious that #1 had told #2 that they had to have a united front against the patient. I asked #2 why he changed his mind, and #1 answered that she knows better (she never answered why) and it's what she would recommend to her father (always a mistake for the patient to ask, and it was the first time I ever heard a doctor pressure a patient by saying that.)

At that point, the patient had to leave for his CT. The patient did not want to fight his doctor, and I gave up.

[Still_in_shock in reply to Tall_Allen]

I pretty much had to force my way with my MO to stop Abi/Pres due to a bad (First) bout of Afib.

My MO got insulted (they dont specialize in PCa) , I wanted to see Dr Kulkarny at Kaiser for an exchange of ideas.

Sidenote: I haven't had another Afib event since.

Problem solved, I have an appointment with Dr Rettig at UCLA in June!!

[mrscruffy]

Yes it did. I wanted to try reduced dose on Lynparza to lessen SE's. We spoke about likelihood of it working and how and when we would test blood and how to proceed if it didn't work. He was also vey receptive when I asked about adding Ostarine to my treatment and how I was going to administer. We also discussed frequency of testing. Always very receptive to my needs and wants

[JohnInTheMiddle]

Shared decision-making? What's that? Reasons for therapy choices, beyond the simplest summary? Naw. Fortunately, behind the scenes, the very best choices, at least around initial diagnosis and triplet therapy plan (which wasn't standard of care).

[Nusch]

Yes, my main doctor always discusses the results of scans with all tumor board members and in our 3-monthly meetings we discuss the options. As I also try to catch as much infos as possible from different sources including this forum, he’s also interested in my input. We always end the meeting with an unanimous decision on how to move forward.

[JJFR60 in reply to Nusch]

Sounds like my MO at ErasmusMC in Rotterdam ( the Netherlands) . All pros and cons of a treatment are discussed where I have the final word.

[dhccpa]

I have a medical oncologist, a radiation oncologist, and a new urologist that I had to find for Provenge. Here locally one has to just break them in, make them aware of new info, hope they read it, etc. Two are shitty about explaining details, choices, etc. That won't change due to personality, med school training/culture, etc.

But everyone knows that I had to seek out a Provenge provider, even the urologist who did it, and I'm using that fact for maximum leverage. I also regularly bring studies, articles from TA, and mention that I am looking at or communicating with Dr. Kwon, Denmeade, Sartor, etc.

Things could be better, but they could be much worse. And I'm a different patient than six years ago (this forum has been a big part of them). I generally stick with SOC topics and no longer ask about alternatives, though I do them on my own.

I'm not as wild about the big medical centers as many are; many of those docs are even more arrogant and often as arbitrary in their treatment decisions as local doctors. And one doctor at such a facility can be vastly different than another, so a patient still has to deal with authority, possibly more so.

[SpencerBoy11]

Not really. Fortunately, I found this wonderful, amazing site full of the latest information in this field plus great input from the audience! I have fired 4 MOs because they didn't know or gave me wrong information.