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Recurrence Post RALP: Did a second opinion change your plan?
Prostate Cancer | Last Active: Apr 11 10:39am | Replies (58)Comment receiving replies
@dhasper
I think KUMC thought I was being a pest or at least asking too many questions. I was actually being very nice- but not feeling nice at all. But I held my temper! Still didn't get answers for weeks and sometimes not at all. I had the same thought do it now on getting the PR. Finely went someplace else that is not nationally recognized, but does treat me well and will actually talk to me. I do know him as he has treated me for BPH. Also, know that he has done thousands of RARP with good results.
I found it hard to find that line of not being a pest and making them mad while getting answers. It seems sometimes these big clinics think I should just listen and do what they say and not ask questions. I am not questing their skills, I just want to know facts and options.
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@diverjer
I really had (and still do ) similar experiences
I was followed by a very nice local urologist however, the small group practice was bought out by an urology chain and patient care went down hill.
I next tried a very renown teaching hospital and got one of the directors of urology. He was arrogant )(but a good diagnostician) and when surgery was on the table recommended me to one of his colleague who had troubling reviews online ( I do appreciate that even some of the best doctors can get some poor ratings but these ratings pointed to both bad patient care and bad outcomes). So I then went to a semi-local one person urologist who had a great reputation for patient care. He did the RARP however after that he detached from my care referring me to others in his office, many times messages and phone calls were ignored most recently I developed an abscessed an infected lymphocyte/Lymphocele following RARP. I was in pain, sweating , fever, shaking, etc. the scanning report confirmed the infection and the office waited five days to call me back. My primary care told me I should have been in the ER and given IV antibiotics.
Like you, I really want to be heard and provided some quality care, I also want as many years as I can get which points me towards the teaching hospitals.
I see considerable room for improvement
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@diverjer
I completely understand you and yes, we have to be in place where we feel heard and where we get answers. Especially because PC is usually chronic condition and requires very often follow up therapies, so if we can not get basic information and respect with simple case scenario, what will be in the future ?!
We got our answers and appointments but I am still upset that it needed extra effort and that all took so much time. *sigh