David:
A few comments to you and perhaps the newbies that your recent post referred to.
Incidentally, I did not know which of your threads to post to, so I picked this one.
Your points regarding the dangers of radiation are spot on. All of the tx. choices have potential consequences. The surgery option has more immediate consequences. Radiation can be more insidious. I found it easier to "judge" surgeons as most of them have records that you can dig out. That is important because it is well-known that the best advice, if you choose a surgeon, is that experience counts. The data shows that more experienced surgeons get better results. There are, of course, plenty of exceptions. But my advice to any man seeking a PC surgeon would be that experience is an absolute necessity. In mathematics, it is called "necessary but not sufficient."
When seeking a radiation oncologist, I found it much harder to get a feel for things. Typically, if you have a complication, the RO is not the one you would see. You might end up with a GI person or urologist. My RO made it clear after the fact that if I were to have any issues, I should see the appropriate doctor. So, he is out of the loop and his record is spotless. Anyway, that's what I found. Nevertheless, in many situations, radiation may indeed be the best way to go. This is not an endorsement of one method over another. I'm just saying it was difficult for me to find a good RO (ie: how to do this). It was no problem finding a true expert surgeon.
David, another point is that you are indeed an exception if you look at the continuum of radiation problems. You make a superb point that one should not dismiss radiation as any kind of safe tx. BUT, don't forget, you were unfortunately maimed due to the incompetence of your RO. She had you radiated without you drinking any water. She ignored your complaints that it was burning, and you chose to be a compliant patient, much to your detriment. Again, as I said, it is hard to rate a RO!
Now, (attention newbies) David: You continually tell us that your doctor "strongly feels" this and that. Folks, please understand that there are still a load of unanswered questions. David, you can dress it however you want, but you have taken no action with a sharply rising PSA (except for a sharp decline in your last reading -- it might be worth a re-test). That's fine. I understand you have a special situation. But that is what YOUR doctor says for YOU. You also said:
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And this point, my oncologist makes this point constantly, is that too many men either out of their own personal fear or other reasons - are too quick to pull the trigger. At the least, you need at least 3 post surgery readings with a steady progression over .10, spread out over 3 month intervals per test.
No reason to jump into it. He said its better for men to have 3 readings rising at and above .20. That would be his preference.
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So, in other words, someone can spend a year (well, three three-month PSA tests) doing tests with a sharply rising PSA? I thought most of the studies suggest doing SRT while the PSA is very low (I think the best results were with a PSA less than 0.2). This should not be based on just one PSA test.
Finally, a suggestion to you.
You now have serious dental issues and you plan to do the surgery. You have weight loss in the extreme right now and you might be drinking through a straw if you go through with the surgery (plus the toll surgery in general takes on one's body). You also have a very serious case of PC. Yes, I know your local doctors do not attribute the weight loss to the cancer, yet they cannot find a reason for your weight loss. Anyway, I am surprised with your current condition (as you describe it) that your doctors are still willing to do the surgery. Can you afford even more weight loss?
You would seem to be a natural candidate for Mayo Clinic. They do well with folks with special, complicated issues. Congratulations, you qualify! You have submitted yourself for so many tests. The local folks are getting nowhere.
I understand that the VA has a lot of services and they are saving you a huge amount of money. It seems to me you can get Mayo's analyses and then still have the work done at the VA. I know it is more expensive. But, you know, sometimes cheap is expensive.
I do hope you will at least read and think about
my suggestions. A few of us have made suggestions in the past, and you have a hissy and put folks (mostly me) on IGNORE. Hopefully, you will consider the above in the spirit in which it is given. Seriously, you keep writing about
your declining health and I am writing this out of concern.
I'll probably get skewered anyway, but I hope not!
Mel
Post Edited (compiler) : 7/31/2014 10:12:23 AM (GMT-6)