Zufas, no one needs to be shot, messenger or not. All knowledge is good, and with us PC guys, all knowledge is strength and the best way to overcome fears and uncertainties.
So is it being suggested that PC doctors, including the Radiation ones and Urologists are all wrong, and need to go back to school on PC?
That's my only point. I still detect "doctor
bashing". A bad doctor needs to be called out, total agreement. But when does the patient know more than the doctor, and isn't that a dangerous precedent to start?
I think that the bulk of men here (at least in my length of time at HW) come here with Gleason 6/7 cases, they don't want to deal with cancer, they don't really like any of the options, and they want to get the "cancer thing" over with as quickly as practical, and put it behind them and move on with their lives.
The other group here, has advanced cases, agressiveness, re-lapses, complications, etc. So all info is good in my book. One size does not fit all.
We always hear about
the "surgery bias" here at HW Prostate Cancer. I don't still see it as a bias, its just a fact of life, the bulk of primary treatment for PC is surgery, so most men go down that route.
I have been happy here the past few months to see other brothers go down the lesser traveled paths. Someone on Proton, someone that went through HIFU, and course, have picked up a few more Seed treatments.
That gives some variety, some choice to anyone newly dx. I have seen a change here, where more "vets" here are willing to reccomend Watchful Waiting, RT, other approaches other than the surgery they chose for themselves. That means the collective knowledge here is growing and spreading.
Been here for over 14 months myself, I only wish I knew back then, just 25% of what I have learned here, no telling what I would or would not have done different.
For all the men here that have had difficult dxs, and adverse reactions to various treatments and procedures, its sets a good example that all is not well all the time in Emerald City. Things do go wrong. Problems do pop up.
Those, myself included, that end up being the low percentile groups of problems, etc, are important to show how we work around the problems, how we move forward despite the set backs. This goes too for the men that have long term incontinence and ED, many creative and touch choices have been made there as well. My own thorn is well known here, and to talk about
it to a stranger would make no sense, can't believe I am 13 months to the day from surgery, and I have now spent nearly 180 days on a total of 10 catheters, including my current run, which is day 76 in a row on the SP cath. I hate it, every day of it, but its my "reality" and I learn to adapt to the thing that I hate, and hope that at some point not only will I be free of the tube, but won''t need one again a few months later. According to my uro, I am in a tiny group of perhaps 4-5% of men that will have continual or continuous problems with bladder neck scarring and retention issues.
John's story or testimony is great, its different, its complicated, but it needs to be told. A lot can be learned from the approaches he took, the paths he faced, and the choices that were before him, and his own personal determination and tenacity not to give up till a reasonable and sound answer could be found. That is powerful.
David in SC
57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.33rd Biopsy
: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3Open RP:
11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09Path Rpt
: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence: 1 Month ED: Non issue at any point post surgery
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped 9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys ,cath #8 33 days, Cath #9 in 35 days, 12/7/9 - Cath #10 in place