Recurrence getting started...what now?

[Realbigboy]

I'm 66. Was diagnosed in 2016 Gleason 4+3, went on A/S while deciding on treatment and to get further testing and scanning, surgery with #1 rated robotic surgeon in Montreal November 2017. Negative margins but minimal seminal vesicle intrusion. Then the problems started. 2 weeks later had total urinary blockage, cathetrized 3 times but not scoped until January 15, 2018 when my urologist pulled out a large stone causing inflammation to my anastamosis and 80% to 90% blockage. Was repeated a month later with same result. Had to beg for CT scan which I received in late April 2018. Discovered blocked right ureter. Cystoscopy unsuccessful in removing blockage. Had surgery to reroute the ureter. Then developed a hematoma which took weeks to fix. Was told blocked ureter caused by original RALP. I still have very weak stream, stop/start, straining, and inability to fully void. Then, after PSA levels of <0.01 for 23 months my October 2019 test came back as 0.05 and restested at 0.05. my early February 2020 test came back 0.12 and retested 3 weeks later at 0.15. Oncologist says with urinary issues radiation is off the table. That is OK with me as, according to many studies, it is only 50% chance that cancer cells are still only in the prostate bed plus radiation causes a plethora of other issues including secondary cancer and fistulas. Do I just do ADT, get radiation anyway, or add to the ADT? I suspect that, with my doubling time, I'm going to see my PSA at 0.30 or higher with my test scheduled for June 3. It is quite apparent that my recurrence is very agressive. I expect my time is reduced due to this agressiveness, possibly down to just a year but no longer than 8 years. Thoughts please!

[fluffyfur]

Did you ever regain urinary function and stop using pads/diapers? Husband, G7 (3+4) had RP last year and within a short time also developed urethral strictures from the surgery. After consulting with the urologist and then us pushing to see a urethral stricture specialist, he has a better handle of his issues. He was catheterizing himself 3x a week, using a steroid cream as prescribed by the specialist at MD Anderson, and now is down to just once a week. He is going to start radiation soon due to a rising PSA. He had a pos margin after surgery and has been cleared for radiation. From what I understand the gold standard for urethral repair is urethroplasty. He was not offered a "re-route". Can you get a second opinion from a physician that specializes in urethral issues in Canada? I have found normal urologists to be quite ignorant of this issue and advise you on the likelihood of you being able to withstand radiation?

[Tall_Allen]

You should hear that from a radiation oncologist. With your PSA that high and rising quickly, an Axumin PET scan may be able to tell you if salvage radiation can cure you. Ideally, you would have the Ga-68-PSMA-11 PET/CT at UCLA, but that costs $2977. My question would be why you are throwing clots and getting hematomas so easily. Even the "stone" may have started with a clot. Do you have some hematological abnormality that can possibly be fixed?

[Hidden]

Here's an article about a trial ( GETUG-AFU 16) looking at adding ADT to salvage radiation compared to just salvage radiation without ADT. You can do a search on this trial if you want to learn more.

renalandurologynews.com/hom...

[RonnyBaby]

The urinary problems are sad to read to about - I had my own for months and thought it would never end !

Your recurrence is unfortunate. I admit to a bias - about RP - I would be reluctant to go that route unless my Dx was 'a great candidate for successful surgery'. Nothing ambiguous - no margins - na-da - nothing else being suspect.

I would suggest to many to consider radiation as the first / front line treatment - although thee is risk with any procedure.

When I read peoples' stories on this site, I don't read much about what radiation failed to address. Of course, advanced (morphed) PCa posses a challenge that moves you beyond the initial / first line of defense - where chemo and other advanced treatment options take over.

The good news is that more advanced treatments are in development and some are being fast tracked. I would be more reluctant today - to put the question 'how long do I have left' ?

That prediction becomes harder to put out there - because there's certainly increased hope coming down the pipe.

FYI - I was treated with radiation and ADT with an original Dx 3 years ago. I'm doing well, waiting to see if I go into recurrence myself.

I'm on an ADT holiday (it's been over 1 1/2 years now) and should probably know this calendar year what's up - as my PSA rises and 'T' recovers from castrate levels and time.

How low can I stay (target is nadir + 2.0) - last checked in at 1.3 and rising ?

Wishing you well on your journey ....

[j-o-h-n]

Greeting Rbb,

Tell us more bio info.... we know you're a 66 year old male, where are you located? Where were you treated? Doctor's names(s)? All info is voluntary but it helps us help you and helps us too. Thank You!!! Keep on posting here.... good valuable info (and free)...

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 06/01/2020 10:22 PM DST