Rising PSA post Sx, post SRT and now?

Bob,
Actually, In this instance I see a Uro dispensing solid advice in an area beyond his purview. With failed RP/RT it is not uncommon to let the PSA rise to 20 or more before starting ADT. The trigger to start ADT is influenced by PSA velocity, mets detected on a bone or CT scan, or the presence of physical symptoms. The definition of detectable mets is changing with the arrival of the more sensitive scans. I edited my original response here. It’s not clear to me what your PSA is doing. You may need to have some additional results to figure out what the doubling time is.

Your MOs ambiguous statements may have to do with patient comfort. Some patients have a lot of anxiety knowing their PSA is increasing and have a strong sense they should be “doing something” to fight the cancer - thus electing to go on ADT sooner than necessary. Sometimes doing nothing for awhile may be better - allowing a patient to delay the side-effects of ADT. I have had two MOs tell me no one really knows if there is a survival advantage to starting ADT earlier or later.

When you do start ADT you will want to include Zytiga or Xtandi to the Lupron at the outset of treatment. Studies show a much improved time to castrate resistance compared to adding these drugs later in the treatment.

Of course I’m not a doctor. The information I’m providing is paraphrased from the information my MOs have given me.

Good luck with the path you choose!

Bob,
Doubling time based on these low PSA numbers may not be accurate, but from eyeballing your signature it looks to me that your DT is probably somewhere over 6 months. If that holds you could still be a couple of years or more from a PSA in the range your URO recommends for starting ADT. I'm a bit surprised at your MO wanting to dump the decision on you without giving some guidelines based on his/her experience.

Here's my situation and my decisions so far with a lot of consultation and guidance from my MO. My PSA became detectable again about 4 years after SRT and a year or so later when it rose to 0.2 I moved my care from my RO t UMass Medical Center to a MO at Dana Farber. My MO said that based on my long intervals of low to undetectable PSA after ORP and after SRT he was inclined to let PSA rise to at least somewhere between 5 and 10. In 2017 my doubling time started to shorten at an increasing rate - from 9 months or so down to not much more than 2 months by last May.

I enrolled in a clinical trial and started ADT last May. I was randomized into the trial's Degarelix-only arm - the same treatment I'd have gotten without the trial other than extra blood work and long-term follow-up. The trial's other two arms were Degarelix plus Apalutamide, and Degarelix plus Apalutamide, plus Zytiga. My response to Degarelix (Firmagon) was a PSA drop to from 6.6 to 0.45 in one month and then to undetectable (0.02 - the tests lower limit). When I met with my MO a couple of weeks ago he said I probably lucked out by getting just the Degarelix because either of the other arms would have probably been over-kill with added SE's. He said he doesn't always see such a fast and persistent drop to undetectable and based on that he's inclined to let let my PSA rise further after it returns than he might otherwise before starting the next round of ADT.

Of course, unanswered and unknown, is will I have a similar, better, or worse, outcome over my remaining lifetime compared to the guys in the other two trial arms. But based on what we know so far I avoided some near-term side effects that may or may not have improved long-term outcome.

The problem with PCa when it reaches this stage is what to do, when to do it, what combinations of treatment to use is as much art as science. What a doctor might suggest for one patient may not be what the same doctor might suggest for another patient with a different history. We as patients have to find doctors we trust to share their experience, their best guesses, etc., and then we do pretty much have to make decisions for ourselves. Again I wonder why you MO isn't at lest sharing educated guesses and outlining options.
Jim

Based on your current MO lack of experience with men at your stage, I would be looking for one that has the relevant experience that you need.

I would be formulating a plan and set targets that would be treatment decision points. The plan would include the proper investigative scans. I question why you would defer treatment until mets are found based on your initial high risk dx at a very young age. You don't want to let this get out of hand. The plan in my opinion would include a Provenge assessment and target as to whether and when it would be used. Leaving it up to you and saying that your numbers are too low without telling you what number is no longer too low is in no way useful.

Find a very experienced MO that has successfully dealt with many men in your situation and get the professional guidance you appear to be lacking.

JNF, and teddy9, thanks for the replies. I don't have a lot of options for MOs with PCa experience in my area. My MO was recommended to me by another PCa brother who was much further along into disease progression than me. I do think I'm in good hands with him, though I really have no basis of comparison since he is the only MO I've consulted. I need to start educating myself in PCa progression and get comfortable with the idea of progressive disease and treatment options. Just when I think I'm getting somewhere in planning, I read or hear stuff to the contrary. My MO indicated that you can't always rely upon PSA alone to trigger decision points since some guys don't put out much PSA and may have extensive mets while others may have high PSA with nothing detectible. It is a quandary. I certainly don't want to let things get out of hand but also don't want to jump the gun and start sooner than needed. As teddy9 mentioned in his post I recently read that Axumin is more likely to detect something at a PSA of 1.78 than lower values so I'm already thinking waiting until a PSA of 2 makes more sense. I know nothing of Provenge so will need to look that up. Again, thanks to all for the responses...The more information I can get, the better and is much appreciated.

Bob

Thanks for sharing that mattam. Much appreciated and very helpful!
Bob