You guys are amazing!
Thanks for all the encouragement - it's hard to put into words, but finding this site may just have been my saving grace. I am a very private person and I don't discuss my health issues with very many people. I tend to put out the stock line "I'm fine" and internalize my problems and concerns.
The ABLCS group has provided me with a place to pose questions that I might not otherwise ask, vent when I feel the need, let someone else know just how really scared and bewildered by all of this I really am, and most certainly a place where I don't feel alone and without answers (or other points of view). These things mean alot to me.
So, if I am to successfully come through this rough spot in the road of life, I need more information. This is the thanks you all get for cheering me up!
I have not made a choice yet for a second opinion, although I have more or less narrowed the list to two: 1) Shandra Wilson; and 2) M.D. Anderson in Houston. When should I start putting the wheels in motion to make contact? I have my third cysto on 6 July (first was to remove papillary tumors (2 small ones), scrape CIS and take biopsies; second was to check margins, look for additional tumors; third is my first check up after initial BCG's 1-6. Does it make sense to try and schedule an appointment quickly (as in right after 3rd cysto, or to set it up a couple of weeks after the 3rd cysto?) I don't know what would be the appropriate timing for 2nd opinion.
Now, making the assumption that I get an "all clear" after the 3rd cysto, should I expect to be placed on a maintenace regime and begin the 12 week dance of the laughing catheters? I am confused as to how this is going to work, because if I start the 12 week routine, won't that hinder another doctor in performance of a second opinion? Conversly, won't performance of the second opinion foul up the 12 week program? Seems to me that one or the other has to give way. What are your thoughts?
What happens if the physicians don't agree? Go for a third opinon?
The discussions seem to revolve around the physician, but what about the pathologist? Isn't this the person that actually makes the call as to progression and invasion? Are there rankings for pathologist the same as for the physicians? Which cancer centers have the better pathologists?
I know that the centers use the team approach, but isn't it reasonable to assume that each member of the team performs their function without second guessing by the other members? Or is it the opposite and each member's work is reviewed by the other members?
Mike, you have a valid point about the possible reason for my preference for female physicians. I had never been seen by a female doctor until the issue with my neck. Perhaps it was just the luck of the draw that put me in contact with a female neurologist, but I looked at it a little differently.
First, this person listened to me and my description of the problem, second, this person did not automatically assume that they knew the answer to the problem, third, this person actually took the time to look at the information and films that were generated by the previous doctors before making a decision. At the time I was not differentiating bewteen male and female. I began to think about that after the physical therapy sessions and elimination of the pain.
I think I became more disillusioned and frustrated with each and every male doctor I saw as they would not take the time to do any of the three items I just outlined. Each, in their own turn, assumed that the source of my pain was perhaps a rotor cuff injury from playing sports (I played a trumpet in the band), a nerve injury to my hand/wrist (this opinion earned me the opportunity to have very large needles stuck into my hand and wrist all the way to the bone), nerve damage due to a deteriorated/bulging disk in my lower back (this resulted in first being placed on a rack and streached to the point that I might have been able to play with the Lakers and then later, hooked up to a Tensor to electrically shock the muscles into submission - didn't work but gave me really curley hair for a while), and finally the straw that broke the camel's back: the option of fusing several vertebra in my neck which would have given me the same mobility as the Tin Man in the Wizard of Oz (old version w/ Judy Garland).
As it turned out, the neck injury was a fractured vertebra that completely split and then returned to its exact position leaving only a hairline fracture but the fracture was clearly visible on the MRI. Sadly, none of the physicians noticed the fracture except the female. The recommended treatment was simply physical therapy for about four months. No surgery, Tensor packs or other devices, and I still have complete movement in my neck.
Secondly, I realize that women have a tougher time just staying along side men in most professional fields (glass ceilings) and I think even more so when it comes to medicine (and even more so in the field of Urology). Having said that, I believe that women try harder to excel and expend more time and energy to keep up with the latest and greatest in their particular field, giving them an edge in their overall knowledge bank. I also believe that women are better listeners than men and pay more attention to detail than men.
Please don't get me wrong, I m not saying that male doctors do not know what they are talking about or are unwilling to listen. What I am saying is that it is just my perception that,I believe that the odds of getting a doctor to listen first and act second are greater with a female than a male.
In most situations, one would have the luxury of time to do all the "doctor shopping" one wanted to do. But, as I have read in this forum, sometimes time in not on our side and decisions must be made rapidly and correctly (as possible) or suffer the consequences. I am not ruling out anybody, male or female, as in anything in our lives, this comes down to a matter of comfort level and issues of trust.
Once again I have rambled on and on. I hope that I do not make a pest of myself to you all. It certainly is not my intention. It is just that I have so many questions and fears and there are so many uncertainties that I'm sure I have yet to experience that your input is going to be invaluable to me.
Thank you all for putting up with me. If I begin to make to much of a pain of myself, please just tell me to shut up. Judges do it to me all the time.
Thanks for all your time and help, God bless each of you.
Jim