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Posted 7/29/2017 9:45 PM (GMT 0)
At 48, I complained about symptoms that were related to low T. GP ordered PSA as well as T, and we discovered PCa. RRP, SRT, and then recurrence has me with slowly rising PSA levels. Despite the recurrence and failed SRT, up to now my uro oncologist has been willing to acquiesce to my request to reach normal T levels with supplementation. Now that my PSA has reached 0.4 and stayed there for a few months despite expected drop in T without supplementation, it sounds like there will be no more added T. He has ordered Nuclear whole-body bone scan and CT pelvis with contrast. I was surprised to hear him say that we might actually be able to see something at a PSA of 0.4.

I've experienced PSA anxiety before, but this is a new sort of test anxiety.

I have a mix of disappointment that I'll probably never get back to normal T levels (since my "natural" level is around 150) and apprehension that I may be starting the next phase of my journey.

I'll report back after getting test results.
Jeff
Posted 7/30/2017 12:49 AM (GMT 0)
Sometimes a bone scan will pick up something when PSA is rapidly rising (which yours isn't). Only a PSMA PET scan can pick up anything with a PSA as low as yours. But the question is - what would you do about it anyway?

As for TRT, never say never:
/pcnrv.blogspot.com/2016/09/testosterone-to-treat-prostate-cancer_5.html
Posted 7/30/2017 2:54 AM (GMT 0)
You don't hear much about how the BAT trials are going..But to get into them I think they want you to be hormone refractory..You have not started ADT yet and your PSA doubling time is a very long period....I think I would consider chemo before I signed up for ADT...
Posted 7/30/2017 3:32 AM (GMT 0)
TA - what would I do about it?
I don't know my uro oncologist that well, but he has been willing to supplement so far, knowing that I am on the trail of eventually developing mets. I think he is a bit concerned that further supplementation is a bad idea. I think he is covering his bases. If there is no evidence of mets, we might have a conversation about another round of testopel. If we find any evidence, then he will likely use that to dismiss any consideration in that regard. I think that is why he has ordered the tests.

Fairwind - please send me info on the chemo you would consider rather than ADT. To say the least, I am not eager to go the ADT route.

Thanks, Jeff
Posted 7/30/2017 5:13 AM (GMT 0)
Im-Patient-

You would join a clinical trial.
Posted 7/30/2017 1:14 PM (GMT 0)
In the past, chemo was used as a last resort and when used against prostate cancer it was thought to be not very effective. But new trials have discovered that if it's used early instead of late it can be more effective..One study combined Taxotere with Zytiga and got spectacular results, the two treatments complimenting each other..The drugs most often used to treat PC are Docetaxel (Taxotere) Cabazitaxel (Jevtana) Mitoxantrone (Novantrone).

In your case, your young age and slow PSA doubling times makes treatment decisions difficult for you and your MO.....You don't want to destroy your quality of life fighting a cancer than is not very aggressive or life threatening...But you can't ignore it either....
Posted 7/30/2017 3:51 PM (GMT 0)
Rather than tell you what to do, I will tell what I would do in your situation.

I would be watching my PSADT (PSA doubling time). If it is less than 6 months I would go with proven treatments rather than become part of an experiment. I would go for an aggressive treatment to hit the cancer early and hit it hard: primary ADT such as Lupron plus Taxotere chemo. If I could get my PSA down to an undetectable level, then I would talk to my doctor and do more research on possibly taking a "vacation" from ADT, but watch the PSA monthly.

I am on chemo now so I know what it's like. The side effects are quite tolerable for most. Generally speaking, the younger you are, the easier it is to tolerate. I wish my PSA was starting out at .4 like yours. Mine started at 463 at diagnosis, but now 5 moths later, it is .2

Good luck with your treatments and keep us posted.
Posted 7/30/2017 11:02 PM (GMT 0)
All - thanks. At this point, my PSADT is about 2 years. I am skeptical that the scans will turn anything up just yet.

Please let me know if you see a clinical trial starting up that I might qualify for.

I might investigate BAT with my doc at some point, especially in light of my history of low T (I am concerned that I will become castrate-resistant sooner than usual because of that).

Tests are this week, so I'll update.
Jeff
Posted 8/18/2017 10:04 PM (GMT 0)
Tests came back negative, as expected.

My biggest surprise was my oncologist's statements. He stated that, at the moment, I do not officially have prostate cancer. The definition of biochemical recurrence after surgery (pre-SRT) is 2 consecutive PSA rises to or above 0.2. However, the definition of biochemical recurrence after SRT is a rise of PSA to 2 points above nadir. Since my PSA dropped to about 0.05 after SRT, that means I would need to get to a PSA of 2.05 to be considered a recurrence. After our visit, I checked online and found at least a couple of papers that claim BCR after SRT to be 0.2 or above. So I asked for clarification, and he clearly stated the 2.0 PSA after SRT for BCR.

So... welcome me to the club? Temporarily?

His assertion is that it is possible that there is benign prostate tissue remaining, and my rises so far can potentially be attributed to it not yet having reached steady state.

This all seems pretty fantastic to me - I had assumed that I was already micro-metastatic and just trying to bide my time before needing to be treated. I still believe that (and I suspect that my doc does too), but after waiting another 3 months to see what my PSA does, he is willing to treat my T levels with testopel, assuming PSA does not alarm.

Thoughts?
Jeff
Posted 8/19/2017 1:21 AM (GMT 0)
He is mistaken. Nadir+2 is the definition of biochemical recurrence only after primary radiation treatment. Confirmed 0.2 is for biochemical recurrence after prostatectomy, whether there was a/SRT or not, and irrespective of ADT. Benign prostate tissue that is left behind stops putting out any PSA. But they are all very arbitrary definitions. The important thing is what, if anything, you want to do about it.
Posted 8/19/2017 3:24 AM (GMT 0)
I guess I need to share some papers with him next time I see him.

I don't think it will make a difference to the way forward, though. I just had greater confidence in him before this last visit.

I did ask about BAT, and he recommended that I try to enroll in a trial, since there are potential issues with heart health with both low T and high T. He will be watching for one. Although he was not willing to simulate the BAT treatment, he suggested that he would be open to treating with T past the initial Lupron treatment (assuming I end up going there).
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