What can I expect (for recovery, quality of life, life expectancy, etc.) after just having a percutaneous nephrostomy procedure done on my right kidney, with a stent inserted, and now facing the same on the right side, without the stent?

Diane P.,... you've got to be kidding me! You are absolutely awesome! All your questions show you not only understand exactly what I was saying and asking (even with my stating the second procedure to be again on the right side, instead of the LEFT side - ugh!), but have gone to incredible and unexpected lengths to be thorough in trying to cover all my problem areas. Along with that (sorry for gushing, but it's well-deserved!), you have hit perfectly on the areas of personal and emotional concern I'm experiencing. Now, to business:

You sent two replies; I'm addressing them both here. My responses are in parentheses. You said (edited):

Comment by Diane P on June 20, 2009 - 4:17pm
Philedude, I'm doing some research for you, and when Monday comes, we'll try to get your question straight to an expert in the field.

In the meantime, hang in there. I know it's difficult, with so many questions and no one to ask.
(You nailed my first concern!)
I find it astonishing that you haven't been able to speak to your doctor in this long. Everyone goes on vacation, I know, but it certainly seems like you should have had access to another urologist while yours was gone, especially when it comes to such things as a PA recommending more procedures. Do they not have another urologist on call during this period?
(My urologist left for vacation two days after the PN procedure was done, therefore on a Thursday night, while I was still hospitalized recovering. NOTE: He had brought a Hematology (chemo) Oncologist in to talk with me about possible future approaches, who was fantastic. The gentleman showed up three or four times, and was very comforting and knowledgeable - he even offered to bring a Nephrologist in to speak with me. But that never happened. My urologist [Dr. P] said I would be discharged the following day, after one more blood test, and would see an associate of his, a Dr. D. Dr. D showed up Friday, said he was a urologist who worked with Dr. P from the same office. He answered some basic questions, then I left later that Friday afternoon. I thought I would see him again during my recovery week, while Dr. P was gone. It turned out that BOTH UROLOGISTS WERE GONE THE WOLE WEEK, AND NO OTHER PROFESSIONAL WAS MADE AVAILABLE TO ME OTHER THAN THE PA).

Were the Eligard side effects such that you just would not want to go back to it since the substitute treatment seems not to be as effective?
(In at least half of the average 24 hot flash sweats I incurred each day and night, I could soak three top-brand paper towels wiping my exposed upper body and arms in a two-minute span! This was very counter-productive during any business meeting, social or personal close encounters.I don't see how any man who leaves the house every day for work or business purposes could accept to take a second 6-month shot of this, let alone three more times!)

Is your urologist scheduled to be back on Monday?
(Yes. And I will sit with him in about two hours. More on that below.)

Are you having pain? Is that being treated?
(Mostly strange body ache-y pains, like they're in the bones and/or muscles, in the lower or upper back, the shoulders, and particularly the rib cage, with a strange painful spot about the size of a quarter on the lower right side.)

Comment by Diane P on June 20, 2009 - 6:20pm

When you were originally diagnosed with prostate cancer, what were your PSA numbers?
(The first was approx. early March, 2008. It was 257! Two weeks later it was 267.)

And then you had radiation and the Eligard shot, which reduced the PSA to .6, but since changing drug therapy the PSA is rising again, correct?
(Yes.)

How long has it been since your radiation treatment?
(It ended July 31, 2008.)

And when did the kidneys become involved, and why? Do you know?
(I felt the Casodex pills I started taking in February, 2009 [ 50mg, once a day] were depleting my energy, and I'd developed upper body aches, all recognized side-effects one can find through Google'ing. It was becoming overbearing. By late early April 2009, Dr. P suggested I stop taking them.
MID-NOTE: I'd had a CT scan in October, after the .6 PSA, which showed nothing notable in the prostate area or otherwise. After a check-up PSA test in January showed a score of 50, then a 55 a couple of weeks later, the Casodex was prescribed and I got a bone scan done. It also showed nothing significant, other than a previously seen small blockage on the left kidney tube. Both my urologist and my radiation oncologist were involved in these checks and tests.
So, after I stopped taking the Casodex, Dr. P had me get a "full-work-up" blood test. At the same time, I realized I was feeling even worse, now needing to lay down and rest every late afternoon or early evening. [luckily{?} I was recently unemployed]. Body aches were different, but as bad, and my left leg was swelling. THE RESULTS FROM THE TEST, IN MID-MAY, WERE PSA 155, CREATINE ELEVATED. My searching showed the signs of kidney failure and side-effects of Casodex use are very similar.
My suspicions on why I suddenly have a kidney problem center on the radiation treatment, which was first wide, then narrowed to the target prostate, due to the high PSA number and a Gleason score of 9 [ a 5 and a 4], then the CT scan in October, then the bone scan in February - both possibly due to the dye they inject, with no one testing for my sustainable kidney function before that.

Are you on antibiotics? How about other medications?
(Nothing for the kidneys. I did receive a shot apllication, in two parts, of a newly-approved antagonist, similar to the anti-agonist Eligard, called Degarelix®. So far, so good).

How long ago was the first percutaneous nephrostomy, with its stent?
(Tuesday, June 9).

And I'm not sure I understand why the second percutaneous nephrostomy would be basically "permanent"?
(I understand this procedure, to be done tomorrow to relieve any remaining blockage on the left side holding up my stabilization, will not include a stent procedure, and is generally replaced by a transplant or dialysis. I could be wrong.)

Are the kidney problems in part (or whole) being attributed to the chemotherapy?
(There has been NO chemotherapy done or suggested so far, other than my talking with the Hemotology Oncologist.)
Is there a hope that function can return, or is there permanent damage?
(If you're referring to the kidneys, I thought the idea was to get the PN done on the right, stabilize, remove the external tube, then move forward with trying to identify why I still have elevated PSA numbers when there is no apparent signs of tumor activity.)

I see that on this page regarding Eligard, some side effects can be urinary blockages and problems with normal kidney function. Is this in part what happened?
(That's the first I've heard of that, and I've done a LOT of reading!)

From what you wrote, it sounds like your doctors' intentions and hopes are to fix the problem with the kidneys so they can return to addressing the prostate cancer, am I right?
(You saw that exactly right, Diane P.!)

So your reference to possible transplant or dialysis makes me think that for some reason the kidney damage may be irreversible. Is this what you've been told?
(I don't know. I will meet with Dr. P. today and see if that's what he thinks.)

Was your PA all right with your waiting for the second procedure until Tuesday?
(On her recommending my immediate move to more aggressive kidney treatment last Tuesday, I demanded to speak with specialist first. She said she would arrange that, and would schedule the left-side procedure for the coming week [now this week]. The arrangement she made for me to speak with a specialist scheduled that for this coming Thursday, bypassing the procedure she'd earlier scheduled for tomorrow, which was confirmed by me, my urologist [from his vacation], his scheduling person and the hospital. I was not all right with that, and am keeping the procedure schedule, as getting ALL the numbers down ASAP is the primary goal.)

Let's say that the kidney problem is resolved to the best degree that it can be. What did your doctor say would be the next step in your prostate cancer treatment?
(As stated above, see if some hidden or traveling tumors are driving the PSA numbers up, or some thing else[?]. If something is found - likely in the lymph node, bones, or maybe another organ - then I guess it's on to chemo treatment, perhaps with the oncologist I met in the hospital, or in a recognized cancer facility. I DON'T BELIEVE I HAVE PROSTATE CANCER [PER-SE] ANY LONGER.)

(Diane P., this response from you is far beyond my expectations. I cannot tell you how much I appreciate the depth of understanding and patience you have shown. I hope I have not answered beyond helpful detail, and will shut up now and go get today's blood test (PSA, Creatine, etc.) done and go sit down with Dr. P. I look forward to exchanging our mutual results when you next get an opportunity. I know this is somewhat complicated, and will work to simplify this process on my side as much as I can for your best benefit!)