Advanced Prostate Cancer
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You are not alone

At age 45 I was diagnosed with prostate. After biopsies the prostate showed cancer on both sides of prostate but still contained. So my Doctor and I settled on a radical (1999) prostatectomy, with NERVE SPARING, ha! After successful surgery, I did 6 weeks of intense radiation treatment. A year later the incontinence was driving me crazy. So we added an artificial urinary sphincter (2000). SUCCESS, my PSA was undetectable until (2014). Now when the PSA was at 2.0 my oncologist began LUPRON every 3 months for metastatic prostate cancer. On the 8th month we took a break from lupron even though PSA was still detectable 0.1. As soon as we hit the magic number 2.0 again, we started LUPRON, and a trial drug ZYTIGA with a prednisone chaser. Now my energy level in continuing to decline. In (2016) the AUS (artificial urinary sphincter) failed, so the super incontinence is back, I am now 61 and not sure if I want to go through another surgery of that magnitude to replace the AUS. May (2018) I am scheduled to go back on the LUPRON but we still have not located the cancer. I retired November 2016, because of the fatigue, and some days are better than others.

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My friend we share a similar history No clear path forward My sphincter started squeaking when activated( a lot of joke material here) Getting a new scan with chemo to follow.Please stay connected.It helps me to see/hear what others are experiencing.

My take away from your post is you have been winning this fight for 18 years.

Stay strong

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Seeing your pist i dont feel so bad as i went through no surgeries. I can relate to not being able to work though. I started Xtandi 2 months ago and it pretty much paralyzed me with fatique. I hated to quit work but i had too with 7 years on lupron now Xtandi, the icing on the cake. Im now metistatic and reduced the dose in half. I do feel better but we will se if it will still do the job. Good luck with your journey.

Thomas

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My AUS has been active for a little over a year, and I can't imagine going back. Is it possible it's a part they could replace without the whole surgery (which I concur was a big deal)? Best to you as you make your decisions and fight forward.

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Do you know what your Gleason number was.

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I spotted this article the other day, you may find it useful.

dailymail.co.uk/health/arti...

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It all Depends, Depends and more Depends.... I purchase them by the case from Costco's (home delivery at no cost and in a discreet carton) warehouse at a reduced price.

Good Luck and Good Health.

j-o-h-n Saturday 04/14/2018 12:24 PM EDT

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Almost twenty years out from RP. This is a long path you’ve been on .. a lot of suffering... this urological stuff is a unique form of drudgery. When any of our basic functions are off kilter that impact looms large on our lifestye.Dont need to tell you that. I’m relatively new to this in comparison to you. I’m 3yrs in , and praying for more life without too much suffering. We can realistically say that once we reach an advanced stage it’s a lifetime of vigalence to thwart our common foe. Many chapters to this saga. I wish you well and hope that you have enjoyment in your life beyond the realm of all of our medical toils and trouble. You have more chapters to write my friend.. it ain’t over yet..

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