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?

Philedude,

Let me echo Tina -- thanks for your wonderful updates. I'm so hoping we get our response today.

I am traveling today and won't be at a computer until after about 5 central time. If our doctor responds today, Tina will post it asap.

I hope the dye test goes well. Later tonight or early tomorrow I'll spend some good time with your updates and see if there's anything on the web that seems pertinent. I at least feel that right now you have a much better level of information from your doctor, which is key.

And for the record, while it may have seemed sometimes this weekend that you were being a bit of a pain to the hospital staff in not going along with your PA's recommendation, I will say this: I think that by trusting your intuition, you did exactly what you had to do. When it comes to our own bodies, we hear all the time that we have to be our own advocates. That's exactly what you did. You weighed the information you had and the options you were given and they didn't seem to add up for you, so you acted on it. It's very difficult to just not "go along" with a medical professional's advice. But intuition can be very strong sometimes, and often it's the best thing we have to go on when we're in a situation without enough information.

Take care today, and I'll be back to check on you as soon as I can. Diane

Hey there, wanted to touch base to let you know that we're still waiting a response philedude. Hopefully, we can get you a little more info before you head in tomorrow. Thanks for your wonderful updates.

I just realized I may not have hit the "SAVE" button on my update yesterday...

I met with Dr P., and we fully reviewed my time with him starting with last March, 2008, through the prostate tests and treatments, and up to the discovery of the kidney problems a few weeks ago. That was good.

What we then resolved was to NOT proceed with today's left-side percutaneous nephrostomy (which would basically be permanent), but to look from below the bladder, to see if a dye will travel up to the kidney. That will then let him insert a stent in the left kidney tube. There is also a possibility of doing it from above, if signs are again good for access through the tube. He is not too optimistic (as he has remained), but I don't quite understand why; he says it's due to that tube possibly being blocked longer. But we agreed to take the look and give it a try. That will happen Wednesday, 6/24. He agrees the PN on the left may have been of little to no help anyway, and that even this successful procedure may not move the numbers much faster, just provide a better quality of life. Oh... the new creatine number, as of yesterday's results, was 3.5, down from 4.2 a week earlier. So we agree to just take it more slowly and let it go down. The right tube may come out soon during this recovery. I am still weak, with little appetite (but getting better), am still losing weight, and concerned that I have not moved my bowels in two weeks, despite taking Laculose (yeuchh!, and giving up, and now taking an over-the-counter enema powder - hope today's the day!).

So that's the latest on treating and stabilizing the kidney situation; one I'm much happier about. He tried to patiently answer all questions; getting to the final resolution, with comprehension on all possible outcomes and further procedural paths, was not easy. My wife says I'm too literal, and more demanding that most people would be. Diane P., I feel I was fighting to stop an unnecessary immediate procedure to change my life in an unacceptable way, directed by less than a fully professionally reviewed process, and take all opportunities to look at understanding the bigger picture with my health and my choices. It appears my urologist agreed.

Also, the PSA number is currently 127, down from 155 a week or so ago, so it looks like the new application of the monthly Degarelix® antagonist treatment is working, too.

I hope this gets to you in time to get the benefit of your opinion, research and wisdom before tomorrow's procedure. But, if not, at least nothing we can't undo (or need to) is going to happen. Wish me luck, again. I wish you all good thoughts and outcomes.

Diane P., I hope you've now seen I sent an update regarding my meeting yesterday, and the change(s) to my next procedures and expectation, before receiving the post above. If not, let me know and I will update you.

I greatly appreciate all the related research links you are providing. I'm going to take some time now to review them, and look forward to our discussions based on catching up to current activities.

Philedude,

Hey, me again here. Tina hasn't yet got our response from the expert yet, perhaps we'll hear today. In the meantime, I'm very hopeful that you got a good meeting with your doctor yesterday, that you got good blood numbers and that a lot of your questions got answered, at least for now. (And I hope you mentioned how frustrating it was to have access to no one in the last several days, especially with your PA recommending a further procedure.)

How did it go?

Did the kidney numbers show that indeed you need to do another percutaneous nephrostomy? I assume that's still scheduled for today, if so. I'm so sorry about that, I know it's uncomfortable at best and painful and mentally taxing at worst. I hope it's not a permanent situation, but rather one that can be returned to normal if the kidneys can heal and do their own work. Either way, I hope it brings your body some relief from the high creatine numbers so your doctors can move on to work on the reason for the PSA numbers.

I did find this "In a successful nephrostomy, the catheter is inserted, and urine drains into the collection bag. How long the catheter stays in place depends on the reason for its insertion. In people with pelvic cancer or bladder cancer where the ureter is blocked by a tumor, the catheter will stay in place until the tumor is surgically removed. If the cancer is inoperable, the catheter may have to stay in place for the rest of the patient's life."

that was here:
http://www.surgeryencyclopedia.com/La-Pa/Nephrostomy.html

Which suggests to me that if you do have a tumor that is not in the prostate, after that tumor was found and removed, perhaps the nephrostomy also could be removed.

I got interested in searching for reasons (other than the obvious) or other interesting information on high PSA numbers. Just in case any of this is material you haven't found on your own:

http://www.healthcentral.com/prostate/c/122/33812/psa-antibiotics

http://www.phoenix5.org/Basics/UndPSAJH.html

http://ehealthforum.com/health/topic129709.html

http://answers.google.com/answers/threadview/id/746815.html

Hang tough. I know today's not easy. I hope you are feeling better about the level of information you got from your doctor, and that today's procedure goes well. As soon as we get an opinion from the doctor we asked, it will appear here. In the meantime, I'll check back to see how you're doing, what you've found out recently and if I can be of any research help. Diane

Philedude, thank you so much for your kind words. They mean the world to me, and what's best of all is knowing that maybe I can be some help!

My supervisor, Tina, was already working last night (Sunday) on getting your question to an expert. I have forwarded her your new answers to my questions, which certainly will help even more. I hope that we can get that response for you soon.

I'm glad that the day for the newest blood test has arrived, and VERY glad that you get a session with Dr. P. today. I also hope you can get that promised visit with a nephrologist.

I'll do some more research for you on this side. Talk with you soon. And thanks again. You made my day.

Me again!

I've been trying to come up to speed on some of the things you wrote about in your question, and I am also coming up with a few questions of my own.

When you were originally diagnosed with prostate cancer, what were your PSA numbers?

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?

How long has it been since your radiation treatment?

And when did the kidneys become involved, and why? Do you know?

Are you on antibiotics? How about other medications?

How long ago was the first percutaneous nephrostomy, with its stent?

And I'm not sure I understand why the second percutaneous nephrostomy would be basically "permanent" ?

OK. Those are my beginning questions, and while I know some of them are very basic, the answers may also prove helpful to the doctor to whom we forward your question.

In the meantime, I'll try to give you some good information you can read on the web. I'm just going to break your question into pieces and see where it gets us.

In case anyone else reading this needs an explanation of the PSA test, here's a good primer:

http://www.cancer.gov/cancertopics/factsheet/detection/PSA

A rising PSA after cancer treatment can, of course, signal more cancer activity, but it is also possible that there are more explanations: "According to Dr. Susan Slovin of Memorial Sloan Kettering Cancer Center, a rising PSA does not always indicate cancer or a recurrence. Moreover, even a steady rise and a very high PSA do not necessarily mean that a man will die of prostate cancer. A recent study suggests that a rising PSA "may indicate that the body is attempting to fight cancer by producing its own antiangiogenic proteins." Journal of the National Cancer Institute 1999;91:1635-1640

Here's that reference:
http://www.hypertext.org/ENGLISH/PSA.html

that's from the Hypertext Guide to Prostate Cancer:
http://www.hypertext.org/ENGLISH/OVER.html#toc

IF that study seems relevant, here is the text:
http://jnci.oxfordjournals.org/cgi/content/full/91/19/1635

And here's one more article on Rising PSA that you might be interested in:
http://www.cancernews.com/data/Article/233.asp

This article suggests that the faster the rise in the PSA, the more aggressive the cancer treatment should be:

http://www.cancer.org/docroot/NWS/content/NWS_1_1x_Rise_in_PSA_May_Predict_Aggressive_Prostate_Cancer.asp

Are the kidney problems in part (or whole) being attributed to the chemotherapy? Is there a hope that function can return, or is there permanent damage?

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?

http://www.eligard.com/resources/isi.aspx

here's an overview of percutaneous nephrostomy, which notes that the most common reason for it is in cases of urinary obstruction. The "discussion" at the end includes more info:

http://emedicine.medscape.com/article/421260-overview

Part of the reason to insert the tubes is to allow the kidneys to heal. And the stents prevent scar tissue from forming where it would be troublesome. While reading various articles on the web, I found several blogs by patients who had percutaneous nephrostomies and stents placed in both kidneys/ureters.

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?

This page does refer (a bit) to recovery after percutaneous nephrostomies:
http://www.medsolution.com/surgery_urogen-nephrostomy.asp

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?

Was your PA all right with your waiting for the second procedure until Tuesday?

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?

And just because I thought you'd be interested, here are a couple of prostate cancer forums that seem very current:

http://www.malecare.com/
http://prostate-cancer-log.blogspot.com/
http://advancedprostatecancer.net/

I hope I haven't thrown too much information at you at once. Like I said, I'm learning along with you. If you can get back to us with the answers to the questions above that seem relevant, we'll work to get an expert opinion as soon as we can.

Until then, take care. You are your own best advocate. Make sure they manage your pain, and use your PA to get you all the information you need until you can talk to your urologist or a nephrologist. And use us when you have more questions. That's what we're here for.