I met with my new oncologist for the 3rd time in person this past Wednesday. I had a lot to sort out after this visit, and decided not to post immediately, perhaps not at all.
I spent a good hour with my doctor. As far as all the chronic pain in my hip and back (soon approaching a year), and since the higher level ortho doctor as ruled out anything obvious in the bones in the region, the doctor felt strongly that it is the direct result of severe and permanent nerve damge as the result of my blotched salvage radiation.
Despite increasing my intake of Loratabs the past couple of months or so, he felt that I still did not have a good handle on this level of pain, and that the pain is putting my body and I under a lot of needless stress. So we are trying something different, and its his hope, that this combination will even out the pain levels so that I am not dealing with several severe hikes of pain throughout the day.
We have stopped the Loratabs for now, and in place I am on a Fentanyl patch (72 hours) dosed at 12 mch/hr. These patches contain synthetic morphine. In conjunction with the patch, I am taking 5 mg tablets of Oxycodne every 3-4 hours as needed. I have only been on this new routine for about 36 hours, so I am not sure if its an improvement or not. My dr. is going to call me in a couple of weeks, to check with me, to see if its helping, and if the amounts need to be rised or lowered.
I know most of you dealing with PC, have not had to deal with so much consistent pain in your journeys, and I am thankful for that. The prior year, when I was dealing with the damaged bladder, it was a 24/7 high level pain situation that entire year, and now this, so I am going beyond 2 full years with constant pain.
He is still all about improving the quality of whatever life I have, and I am for that.
Still not reccomend starting any other treatment at this time, i.e. HT. It is thought that I am dealing with a difficult and aggressive cancer, and he feels that all the HT would produce, is compounding even more poor quality of life issues and side effects on what I am already dealing with. I still agree.
We are still going to wait for the Demember PSA reading, which will make 6 months from the last one. Could I do them more frequent, of course, but as he said, what's the point, it's going up, its not going to go magically down. It's not denial on my end, its just reality, and I would rather deal with that.
My case has been difficult from the start, and it proves, you sure can't go by the numbers or stats alone. To look at my post surgery pathology, you would think it would be well under control. He too, believes in the difficulty of controlling my cancer, especially in light of the extreme velocity issues prior to diagnosis. In my case, it's turning out way too true, but a lot of that has to do with the aggressivness of the variety. We even talked about men with G8/9 cases that are doing so much better than me.
Please, I beg, no doctor bashing. I am not an idiot, nor do I have a death wish. For me, I can deal with harsh facts, rather than sugar coating or trying to fool myself. My docs are straight shooters, and when we discussed prognosis related issues, it's not real good for the old Gipper. I am not giving up, not checking out (least not by my choice). It still possible I may have to try HT or chemo at some point in the future, but we are not looking for any particular number in the sand. My doc is not about treating numbers, he's about treating the needs of a particular patient at that moment in time. I like that approach. It's been often said here at HW, by many, myself included, that PC and it's treatments - is not a one size fits all, and I appreciate the personal attention and time this doctor is allocating for dealing with me.
I have talked about this before here, but once my curative hopes went out the window with a quickly failed surgery and the horrific radiation experienced that I both endured at the time, and forever will suffer as the results, my whole attitude about this cancer changed. I have no PSA anxiety, and I don't say that to sound tough. It's not that I don't care, it simply doesn't matter to me anymore.
We talked about expensive and complex testing that could still be done (so this is one doctor that's not trying to push me into spending money to line his pocket), but he said that even if I underwent them, its not going to change anything, nor aid him in treating me. I am ok with that.
If you were to deal with this much pain, for so long, and so intense, you might be able to understand, why I have developed some sense of peace of mind in such a serious cancer situation. I strongly feel my doctor has my best interests at work here, he has no other motivation from what I can tell. If I insisted on HT tommorow, he would simply honor my request, despite his advice. You got to have full confidence when you reach the point that I have with your doctor(s). I have. So much of the rest of it is out of my hands directly.
Not expecting some, or perhaps many of you, to agree with all of this, but as a long time member here, and a brother among you, I only ask that your respect my choice with my own body with my own cancer. This is my chosen path for now.
David in SC
Post Edited (Purgatory) : 9/3/2011 10:25:22 PM (GMT-6)