Just stating on a tough path?

I am 52 yo and I have been on TRT for approx 8 years. After approx. one year on TRT I started to have lower urinary tract symptoms which were much like BPH. Because of this, I saw many uros and had all kinds of testing. I was eventually given Flomax. Eventually, I did have a TUMT done which did not help and a Bladder neck incision later which gave me some relief. I was losing my hair and figured I would take Avodart too to help with the alopecia and "protect my prostate" from any further enlargement. I think this decision could have been a very bad one.

My PSA rapidly climbed to 1.7 and has stayed this way for probably 7 years. My uro for the last 2-3 years suggested a biopsy but since my psa has remained constant, and the free psa numbers 2 years ago were high(a good thing), I figured that the testosterone was causing some glandular enlargement and despite doubling the psa number since I was on Avodart and it is sub 4, I would wait and see how things go.

Last year I had a Total PSA only and the number didn't change so I didn't worry much about not checking the free psa #. I was a little late my latest psa so I eventually had one. I was shocked to see it climb to 7.8(15.6 since I am on Avodart) with a Free PSA of 7%. I quickly realized that I probably have Pca. I wish I had the free PSA done last year too for a comparo.

I have a uro apptmt this Friday. I am climbing out of my skin now. I have perused these boards and have found that Avodart usually causes Pca's to become very aggressive types--usually a Gleason of 9-10 and I can remember the cyctoscopy I have in 2006. I could see the protrusion of prostate tissue around the bladder outlet when I viewed the monitor with the uro. The uro commented on it and said it was no big deal and could easily be removed if a future TURP was to be done. Since Avodart typically causes men to have more aggressive tumors and that men with a Gleason of 9-10 typically have bladder involvement with their Pca's requiring a partial cystectomy or even a radical one, I am thinking the worst.

In fact, I am thinking that I will be left with ED, no bladder or a severely compromised one, incontinence and a high likely hood or reoccurrence due to the high Gleason score possibly cased by the Avodart use.

In short I am going nuts and I have not even had a biopsy yet. I know the gremlin is in me though given the Free PSA number going from 22% to 7% and the PSA velocity from 1.7(3.4) to 7.8(15.6).

Sorry for this being my first post. I needed to vent a bit. Hindsight is 20/20 all the time isn't it.

Thanks for listening. I have of course discontinued the TRT now. Since I am not on TRT, I am going to discontinue the Avodart as well.

Post Edited (Mr.Toad) : 1/26/2014 7:37:30 AM (GMT-7)

Welcome to HW, sorry you need to be talking to us.

First, you're reading way too much into too few facts. PSA can only tell that something odd is going on. All of the problems you've mentioned could lead to a high PSA and not have any PC. The only way to know if you have PC is with a biopsy and getting those prostate cells under a microscope. Until then it's a pure guess what you've got. It's just as likely you have no PC, some low grade PC or a moderate amount that are all treatable.

If you do end up needing treatment, it's way too early to say where you'd end up. A lot men get treatment and only have mild to moderate side effects.

So are you going to get a biopsy? Does you doctor think you need a biopsy? That's the next step if PC is suspected or needs to be ruled out. Until then it's all speculation that is just driving you crazy. Wait for the test results and make you decisions based on fact in consultation with your doctors and their experiences in cases like this.

Andrew

Thanks a million everyone. I am sure the uro will be getting a biopsy scheduled. I'll keep the thread updated.

Break60: seeing that tissue poking up in the bladder around the bladder outlet and the thought that it could be cancerous now is eating at me(among other thoughts). After more reading here, the whole bladder neck is excised during a RP anyway. Perhaps this is not sucha big issue anyway.

Thanks to everyone again.

Toad:

Good luck to you. I think almost all of us on this journey have felt your fear/foreboding.

You have a good chance that this is not PC at all.

I can tell you to

relax, but it is easy to say and almost impossible to do at this stage.

I know when I was in your shoes I spent a lot of time researching PC and the possible treatment options.

That was invaluable. When I received the dreaded phone call ("you have cancer") I had a plan in place. My plan?

I immediately scheduled appointments with experts in surgery, radiation, and a PC oncologist specialist. I knew in advance who I wanted to see. That helped. I was in no good mental condition after the phone call to make decisions. So, I am glad I pre-planned it.

Others might say to relax and just wait until you have a biopsy and get the results.

It depends on your own psyche!

Mel

wow thank you guys. Your thoughts and links are really helping through this. I cannot say enough.