Recovery from RRP for early stage prostate cancer over two years out - my thoughts

I just received a reassuring PSA value which I reported in another discussion. I was convinced that I was having a BCR earlier this year and now feel somewhat reassured. I have worried about BCR almost all of this year and now I am cautiously optimistic -but not cocky. Prostate cancer has a funny way of staying somewhere in your psyche.

As I look over the last two and one half years I have learned alot about this disease, myself, my marriage.
I wanted to summarize a few thoughts:

1) Don't rush into treatment. You hear this but your first impulse when you hear cancer is to rush to treatment. I had a RRP within six weeks of diagnosis. I have had generally good results but I was unprepared the length of ED recovery. Also, I felt that I would get back to normal. I have not but I am satisfied where I am (pills work to 90%).

My urologist told me he had trouble getting my prostate off my rectal wall at surgery due to thick clot from my biopsy. I think that I may have some retained prostate from this - maybe the surgery would have been easier a month or two later. Also, everyone should consider Seed therapy with at least a consult. The seed/surgery argument goes back and forth. I am happy with surgery but it does seem that the most asymptomatic people are the seed patients. I never saw a RO prior to RRP and wish I had.

2) Accept that you have prostate cancer. I wanted to feel cured after surgery but let's face it - this is a chronic disease that can rear its ugly head at any time. Make lifestyle changes including diet and excercise that I believe can change things in the more benign cases (g7 or below)

3) Be patient with ED. It takes many/most of us 18-24 months. This drove me nuts and still bothers me today - but I am thankful for where I am. My physical relationship wit my wife has become somewhat normal.

4) Consider Active surveillance. I did not qualify but post RRP lifestyle for 5% G6 cancer seems overkill to say the least. My ED issues are outlined above and although I am 99% continent I don't feel normal in that regard- I pass urine more frequently than I used to and generally pee sitting down to get the last drops out of my urethra.

I hope this post helps some considering surgery - particularly with early stage disease. The G8/9 crowd I know deals with a whole other host of issues that dwarf some of these lifstyle issues and I respect that they have more serious concerns at times.

Excellent post --- Yes I wish I had been more patient as well. I panicked and rushed everything. I have a very good friend who did the Brachy and so far is very happy with it. I too wish I had at least consulted with a Brachy speicailist. I think the RALP was oversold -- they made the robot sound like the best thing ever and there should be no problems. 16 months still full ED and Peyronies like nobodies business. If you have meduim Gleason's you should look at as many options as possible before doing anything for sure. It was all just fear based decisions. Hindsight is 20/20 though and walking around with radioactive seeds in you wondering what is happening all the time might be a strain as well.

Luther, hang in there. I think a lot of us have psa levels that are below.1. worried guy has posted that the Sieman's test runs high. Maybe you should check and see which psa test you are getting.

Agree - the lymph node changes the interpretation of any increase. Kind of a strange finding - I wonder if there is a way to get a second pathologist to look at that lymph node since that is going to change your approach if you see a small rise. Regardless - we will hope for less than .07 - an even better approach.

HCV said...
Great post BigAL. I just freaked when I heard cancer - I was only 52. My urologist told me surgery was the only real choice due to age. I had a friend who had RRP and he talked me into it as well. Only later did I find out that his experience with side effects was not as benign as he let on. What surprises me is that the failure rate for G7 patients with organ confined disease and clear margins is still 15%. When you consider that after RRP you want to be continent (.95), no significant ED (.8) and recurrence free (.85) the chance of getting the trifecta is the product of all three or 64%. And those numbers are conservative. The ED number could be as low as .60 and the incontinence .90 which would give a 45% chance of the trifecta. Of course recurrence can be treated with XRT but this is only curative in about 70-80% at best. But I agree about the seeds. I have heard of complications such as fistula, strictures etc and then you never have the knowledge of the path that you are dealing with - you will look over your shoulder so to speak - permanently. But you do this with RRP as well. What to do ? (sigh)

Exactly, sigh. It is truly difficult to find unbiased info, and that is what me must do to make the right decision. The trouble is: if a man has a hammer (especially a very expensive hammer that he makes his Mercedes and vacation beach home payments with), every thing tends to look like a nail. Natural human bias. So often, it just depends on who you ask. And after you ask a bunch of them, then who are we laymen going to believe? So we end up trying to decipher all of the studies ourselves, a herculean task while you feel time is a wasting!

I wonder why your surgeon told you surgery was the only choice due to your age? Assuming you had just as good of a chance of a cure with a non-surgical treatment(that might be a false assumption, I don't know, but G6 on Bx, right?) then isn't a cure a cure, regardless of your age? Maybe the deal is there really are no non-surgical(or even surgical) cures, and if you have a whole lot of life expectancy, that gives you so much more time for the rascal to rear it's ugly head before you die from something else?

But then again,speaking of bias vs no bias, what about these studies by the folks who sell DaVinci Robots for millions:
www.davincisurgery.com/da-vinci-urology/treatment-comparison/

Scroll down for all the results, ad take a look at that chart! These studies make it look like surgery is the hands down choice, even with G8-10, compared to all other choices as far as survival goes. It even has some lower rates of a few nasty side effects, though if they showed that for ED and urinary incont I think I would have to call BS. Still, interesting. But is this just completely biased? Or maybe these studies do not reflect recent advances in RT and other treatments? Where is the really trustworthy data? Sigh. ( then again, since I already have the surgery SEs locked in, and will be waiting to see how much more, if any improvement on that I get over the years, maybe I should not look at any other studies than these which will convince me that I indeed made the right choice for my G9 self? LOL!

HCV,

I for one, strongly agree with your #4 comment. I wish more men would weigh in carefully, some potentially serious QOL issues when faced with a minimal PC diagnosis. Once that surgery is over with, you have to live with the results regardless. In my years here, I have see so many negative outcomes with the QOL part, that alone, I would hope, would at least make more men consider AS as a serious option.

When one if first diagnosed, and planning on surgery, we all seem to have the same goal. #1 Eradicate the cancer on the first pass. #2 Not have any long term or serious incontinent issues, and #3 Minimal ED issues.

But unfortunately, so many have the #2 and the #3 issues, or both going at the same time. For those that may have a single core of G6, <5%, that is a mighty QOL price to pay, in my opinion.

David