Posted 1/25/2014 10:28 PM (GMT -7)
To answer some questions raised on a couple of posts here that I normally wouldn't see when I am logged in. Yes, the obvious things have long been discussed and eliminated from the mix.
In the past 2 years, I have seen a top notch ortho doctor who ruled out any type of bone or spine problem. Went to a top gastro doctor who eliminated possibilities from that arena. Went to two physical therapist doctors, of whom never could give me a straight answer about anything.
And in the award winning oncology rehab program I have been in for almost 3 full years now, they have some excellent physical therapists, that don't have a clue for any of this.
It hasn't been for a lack of trying. I still go to PT, even though no forward progress has been made in all that time, because I am more fearful of the results if I didn't go, taking even bigger backward steps. When I took a break from it for about 2 months or so, I went downhill even faster than my current pace at hand. It's hard to go each week, it takes extra effort on my end, because I usually pay the price for 2 days after each session, with even more pain to deal with.
I enjoy my monthly 2 massages I am getting, they feel great at the time, but usually by the time I walk back to my car, all bets are off, and the pain is exactly where it was before I started. This frustrates the massage person, as she was hoping to buy me hours, if not a day or two of relief.
Think people have to face and accept what I have come to accept. What is going on with me, is way out of the norm, and its truly a complicated set of circumstances.
I realize that there are a few men here, whom PC cases are much more advanced then mine, and dealing with critical direct PC related issues. But that would be expected with some of the more serious G8-10 cases.
But I know there's hardly anyone else here, that has had such and endless struggle from day one, with little if any break along the way. I mean right out of the box from surgery, with all the never ending stricture and catheter issues. Then the entire radiation debacle, which in turn led to the bladder damage, the Ostomy surgery, the chronic pain, the always present chronic fatigue.
No wonder my doctors feel that my body has been severely traumatized by all that has been endured thus far. No wonder with the nerve damage from the radiation damage, that these neurological problems have surfaced and worsened over the past few months.
It's easy for someone to want to blame a high and climbing PSA number for a convenient answer to these woes, but my oncologist does not feel that its the case at all. The scans keep coming up clean, and there is no doubt, that most of what I suffer is from collateral damage that was done in the name of treatments.
I wish that all I had to worry about was the PC itself, that would be refreshing at least, and less complicated sounding.
Right now, all I can do is keep on keeping on. As long as this current search doesn't come up empty handed, I will feel like a victory was won.
Age: 61, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incontinence & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA: Too High
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries