Charleston doctor's final recommendations

I got tired of waiting for Dr. Keane's office to give me an update so I had written a somewhat harsh e-mail wanting answers.  Got them this morning.

On the prospective bladder surgery,  his panel of experts decided it was too risky to go forward, with a heavily damaged and radiated bladder being left in place.  Good results could not be guaranteed, and the chances of doing even more serious damage was great.

As far as me having to live with he constant bladder spasms and the pain with them, it was worded:  "No recommendations"

As far as how could the bladder be examined for bladder cancer or prostate cancer spreading to the bladder, "No recommendations"

I didn't  go to him to ask him his opinion of my PC itself, but he ruled anyway, based on all my medical records.  He said only 2 choices, either start HT, or continue observation.  He ruled to continue observation.

So despite a high and fast rising PSA post SRT failure, that now makes 4 doctors that have agreed to continue observation, AS, WW or whatever name suits best, as opposed to starting some kind of HT.  Not one said they recommend starting HT.  Dr. Keane and I never discussed HT, or what I thought about it, again, the main topic was the bladder related issues.

I am very disappointed on the bladder issues, as I have now seen  the "best of the best" here in SC, and came up with the big goose egg.  No answers, no suggestions, no solutions.

Dr. Keane did remark, that my uro/surgeon should have left a tiny Suprapubic port in place, when my bladder was by-passed in 2010, so that there would always be a way to access the bladder in case of problems (like now).  That wasn't done at the time or even suggested.

I will discuss all of this with my oncologist Wednesday, going to push for a PET scan for starters, and see if he wants to look outside SC to perhaps Duke in NC for a second "higher opinion".  I don't feel like doing nothing about my bladder and the pain associated with it (and its getting worse) is the answer.

david

David, my first reaction was, "I hope he didn't pay that guy too much."  Heck, I could have offered you as much as you got from this guy.  I just don't get the feeling he put a lot of effort into his "recommendations" (I use that term loosely in this case).

A conclusion of "no recommendations" seems like a copout.  He could at least have expanded on why he's saying that, on what led him to that conclusion, on what he might have considered but rejected, and why he rejected certain possible approaches.

I'm sorry you didn't get more from this guy.

this is exactly why I haven't been too gung ho about seeing these so-called experts. this guy is the head of urology for the largest teaching hospital in the state, and as his bio states, has dozens and dozens of published peer-to-peer papers out there, and for him to blow me off essentially, doesn't sit well with me.

he didn't mind critsizing some of the work my own uro/surgeon did in the past, but to offer no possible solutions is not right in my mind.

so let's pretend, what if I do have bladder or prostate cancer in my bladder, does it mean its just going to be allowed to spread and damage further? I don't find his findings acceptable, especially coming from the guy who is suppose to be the best.

it's not like I was itching to have a long and dangerous surgery, but if the right experts thought it was the best course of action, I would be willing to follow suit. I also got the feeling, that when I dispute MUSC about them wanting me to see a staff neurologist down there, instead of where I live, I may have upset the apple cart. but its not easy for me to do the 450 mile round trip it would take to see a doctor, have tests, treatments, etc. no reason in my mind that they couldn't farm that out to someone in my region.

for you that aren't familiar with SC in general, the state is divided into 3 distinct regions. I live in the Upstate, where Greenville is located. Then you have the Midlands, where Columbia the capital is, and then you have the low country, where Charleston is. Each of the regions almost run like separate countries within the state. A lot of animosity between the regions, I have seen this with attorneys, medical people, and other professionals. kind of silly, but that's how it is here. not a lot of cooperation between these three distinct regions in a very small state.

I am not opposed to thinking of someplace like duke, that would be further yet, about a 5 to 6 hour drive.
hoping my oncologist will take charge of the situation when we meet this week, and give me a new sense of direction.

david

Sorry to hear this David. Your always in my thoughts and prayers!
Hopefully a new direction will lead to better answers.

Hi David,

I read a well reviewed book a few years ago about how doctors think, written by a doctor.

It turns out that most people think that doctors are dispassionate scientific types that don't let their personal feelings or opinions about the patient get in the way of their medical judgement. It turns out this is very far from the truth and doctors medical judgements are highly influenced by their personal judgement of the patient.

A key recommendation from the book was to believe your instincts about doctors judging you because you were likely to be right and not to use a doctor you felt instinctively did not like you. So maybe your concerns about visiting the neuro did have a part to play in the doctor and his teams final recommendations.

In any case, it seems that he was not the right doctor for you as he has not offered any useful solutions.

I am pleased that you are considering other options, I know how hard it must be to go even further away for treatment. You have shown so much courage through this and I hope that you will find a solution that works for you.

An

David -

Here's some food for thought.

I was a university librarian for a 35-year career. During that span I associated with and came to know dozens of college professors at several academic institutions, professors of varying degrees of accomplishment. Some of them were "stars" in their fields, while most were good but average.

The same applies to doctors. Some are the "stars" in their specialties, while most are "average" (but still good, very qualified).

But the thing that so much impressed me about the professors I knew was that the actual difference in ability and expertise between the so-called "stars" and the rest of them, was, quite honestly, not all that great. The "stars" were good, yes, but not so much head-and-shoulders above their colleagues that the difference stood out between them in a truly dramatic fashion. If anything, I have known in my career professors who were never known as "stars," but who were, I thought, just as good as, and in some cases I thought even better, than their so-called stellar colleagues.

I am certain the same applies to physicians. Don't feel that you have somehow lost some fantastic chance at progress just because this "star" didn't pan out for you. I am absolutely certain that you can still find excellent doctors whose skill and treatments aren't going to fall off an awful lot from what that "star" would have done for you.

You just have to find the right guy. He will do fine for you. Please don't give up. I know he is out there for you.

81 - sounds like some good advice there, and no not giving up by any means, just a bit discouraging after all the build up about that doctor and that facility

mspt - I realize that my case is chocked full of issues and complications, but you would think there would be a doctor tuned into more complex cases, I just don't like this attitude of "no suggestions", etc. Somebody has to have answers to what ails me. Meanwhile, the physical suffering goes on unchecked.
my oncologist is already affiliated with MD Anderson, Houston is a long way from here, the costs and logistics would be immense in my situation, but still a good idea.

david

David,
It sounds to me he just didn't want to take your case. As you know, some surgeons will only accept, or cherry pick, their patients in order to obtain a higher percentage of "successful" procedures. I'm not saying this was his intention, but thought I would just throw that out there.

Nevertheless, keep haunting for a doctor, hopefully you'll find one that can help you.
ps
Are you going to push for a PET scan?

David, It sounds as if this "expert" is a legend in his own mind! There is no excuse for a no recommendation to your problems. Maybe your Insurance company should give him a no pay for no recommendation, as he was paid to give his advice, not cop out. I think you should try Duke or Mayo.

Beachbum

gun - thanks, very disappointed, as I am sure my doctor will think too when we discuss this tomorrow

squirm - you may be right, a difficult case that doesn't go well, might just mess up a doctors bragging rights. he told me outright in person, "I am the only surgeon in the state that could pull of this surgery', now I am wondering if that was a b.s. remark.

td - that was my initial impression, and I should have trusted my gut on that one. I went ahead and met with him, because I thought it was the right thing to do

beachbum = you made me laugh, that was worth it. I like the no pay part

sephie - then you would think a complex and fragile case like mine would have been a challenge and a great project for him.

david

litt - you just gave me the infamous triple dang, lol. but I agree with you. just proves that "big" isn't always better

little - you are quite right, despite my plight, I keep trucking along, as long as I am alive, I have hope.
------------------------------------------
UPDATE:

Now my oncologist have all the letters and notes from me for my visit tomorrow. I sent him a 2 page summary of my visit to Charleston, the actual summary and findings from Dr. Keane, and a 4 page detailed list of things I want to go over with him tomorrow. I have his last appointment for the day, which he usually gives me, as my visits with him can easily take up an hour or more.

I feel good knowing I have covered all the bases we have talked about here, and then some

david

Purgatory said...
Meanwhile, the physical suffering goes on unchecked.
my oncologist is already affiliated with MD Anderson, Houston is a long way from here, the costs and logistics would be immense in my situation, but still a good idea.

david

I posted some info for you about this. Apparently it went unnoticed.

In the event David has me on his "ingore" list, perhaps someone will be kind enough to copy and paste the information for him.

There is a way for David to get to MD. Anderson in Houston for free and to stay there for free. I posted the information earlier in the thread.

Thanks!