Results are in (Update 2/17/23)

[treedown]

So recurrent after radiation and 2 years ADT. PSA pretty close to 3 by now. Bone and CT scan done because my cheap insurance company denied the Pylarify until after the other 2. I don't mind the extra contrasts, barium or whatever hell else they gave me. I keep asking is it nuclear. Only the bone scan was. It's amazing all the things I know about this time that I did not know last time. I sat around today waiting for mt CT report to come in. In the meantime I was able to access the actual scans. Very cool. By scan 3 years ago took like 440 pics and the new one took over 1500. Clearly all the grey tones meant nothing and right when I was going to give up the report came through.

The bone scan is clean and the CT impression is

1. Persistent asymmetric thickening of the right posterior bladder wall at the base

extending from the prostate gland concerning for persistent or recurrent tumor

invading the bladder.

2. No lymphadenopathy or evidence of metastatic disease. No suspicious bone lesion.

So I was a aware of the thickening of the bladder wall at dx. I specifically asked my RO and he said he had treated it? So I assume that meant radiation.

Anyway I looked up symptoms of PC in bladders and I have none of the ones I found in a brief search.

My questions to all of my esteemed brothers is should I still push for the Pylarify PET or go a Pelvic MRI? TA 's recent post makes this question relevant I think.

Any way , for those QOL guys I rode my bike to pu contrast Monday 15 miles and rode today about 22. Today was cold and calm. I was going to ride to CT scan yester day but didn't want to drink my Barium out of a water bottle all warm and all. Made my veggie spicy stew with about 20 ingredients and just finished my second beer.

To quote a brother who I hope is doing well wherever he may be Life is Good.

Update: PET SCAN APPROVED FOR 3/2/23

[Tall_Allen]

Bladder wall thickening might be from radiation. But your rising PSA suggests occult metastases. Maybe your insurance company will let you have Pylarify PET now. But what would you do if you find something, or if you don't? Either way, systemic therapy is a good option.

[treedown in reply to Tall_Allen]

Thanks TA. The thickening was present before radiation. I wasn't sure if something still in the pelvic area had relevance. I will push to the Pylarify PET. My next question are what systemic therapy is SOC for M1 HSPC? And what options are not SOC yet but promising.

[Tall_Allen in reply to treedown]

There have been some trials of a limited term burst of a second-line hormonal when metastases are not visible on a bone scan/CT. It was based on PSADT.

prostatecancer.news/2022/09...

It really doesn't matter if you find something with Pylarify - that's why I'm suggesting that this isn't worth a lot of effort on your part.

[treedown in reply to Tall_Allen]

I hear you and remember this info on this trial. Pretty sure you mentioned it on an early as a route forward though at the time I thought you said negative CT/bone and PET. Maybe that was in reference to another trial. Thanks again. I will see what my MO thinks and decide if any value talking to my RO. Looks like restarting ADT and or 2nd gen, which is what I have been assuming.

[StayingOptimistic in reply to Tall_Allen]

I am leaning towards this thinking too. It does not matter if psma finds something or don’t. It’s time for systemic treatments. The question for me which I can answer safely is : at what level of psa should I resume ADT? and if I start, should I add a second generation anti- Androgen?

[treedown in reply to StayingOptimistic]

I think your right and your questions are mine as well. However, I would like to know where it is now, while at the same time realizing it is only a picture in time. I also know that ADT may mask things until they get really out of hand so now is my opportunity. Initially all of my doctors wanted me to get the best scan at the time because I presented in with such a high PSA and was asymptomatic. They were and may still be convinced there was more disease than they could see but in the end they said it would change my treatment. That changed when after a couple months I saw my RO and he had to decide how much disease I had to decide to debulk my prostate and stated in the first meeting that depending on what he determine he would either give me all the radiation I got or only a blast to the prostate. By the time he ordered an LN biopsy and a MRI, ADT had shrunk the suspected LN's to the point they could not even find one in the suspected area. I now know that the shrinking on ADT was a sure sign that it was cancer which I didn't know for quite some time after the fact.

The fact that nothing is showing now was expected and my MO said he would expect to see anything on conventional imaging until my PSA hits 5 or even 10. Anyway I will be satisfied making my decision off the PET scan results more than making them off the current scans. If tehre are more options that just systemic treatment which my MO alluded to if the disease was still in my gland (which it could still potentially be) or if my current PSA is coming from a more distant source. Additionally some sources are more likely to be candidates for SBRT others so I would lie to know for that reason as well. And the last reason was if I know where they might be early on I can monitor my body for pain in those regions. It's to these points I am wanting to have more information. Was my MO he wrong about the location of the recurrence being relevant? I don't know but once the scan is done the discussion will be done and a decision will be made knowing I have as much information as possible to make it.

[Tall_Allen in reply to StayingOptimistic]

It's a judgment call, but one measure I think is important is PSADT

[dockam]

That's wonderful that there wasn't Lympadenopathy or Distant Mets and a Clear bone scan. I think that I read that a PSA above 2 was required for Pylarify, and unfortunately it's there now :-(. So I would push for it

And Yay for QoL biking, stew and beers - I'm having one after my pm walk.

Livin it up on top Brother,

Yes Life is Good

youtu.be/TZ6bih9esxY(Not working as expected?)

Fight, and QoL on my Brother

Randy

[reconjj in reply to dockam]

I love my Beer also . If Im gonna die Im gonna die happy .

[treedown in reply to reconjj]

I used to drink quite a bit before my diagnosis but have cut way back. More of a treat now than part of my diet.

[treedown]

Pylarify 2 :). Thanks Randy.

[addicted2cycling]

For myself having the PYLARIFY was a *peace of mind* procedure -- always preparing for the worse and pleased results were the opposite.

Party on with bike-beer-good food. (as-for-me) -- gonna nap a bit now then another piece of Junior's N.Y. Cheesecake and ride again 🚴

[treedown in reply to addicted2cycling]

Watch out for that wildlife!

[addicted2cycling in reply to treedown]

Repeat of this morning so close to home with small Bunny Rabbits and Opossums. Instead of a BAM!!! it's *thump-thump* 😂

[treedown in reply to addicted2cycling]

I know how that goes. I had a incident with a male squirrel chasing a female squirrel right in front of my tire. If I had a lighter bike I might have cleared him on my bunny hop but with my heavier winter bike I got him with my rear tire. Bummed me out but what can you do. Better them than us right?

[addicted2cycling in reply to treedown]

" ... If I had a lighter bike I might have cleared him on my bunny hop ... "

technically a *Squirrel Hop* 🤣

p.s. - my *hopping days* are long over so it's just the thump-thump

[treedown in reply to addicted2cycling]

Right a poorly executed squirrel hop. Thanks for clarifying that for me. I have a another squirrel jump toward my front wheel and pivot off the fork. He was luckier, that would have been a meat grinder.

[addicted2cycling in reply to treedown]

" ..... meat grinder ..... "

Tastes like chicken I hear -lol

[Hidden in reply to addicted2cycling]

just watch out for those dammed boars crossing the street , right? 😂✌️

[Hidden]

I don’t understand the Psa=3 ? But no evidence is great. Riding the bike will keep you going! I don’t have any med advice for you . Just Hang in there . Shooter is at that big shooting range in the sky . He was a competitor in this . A wonderful man . Life is good and death is part of life . We all progress down the same path at different speeds . Live in the moment …. God bless you brother ?🙏☃️

[treedown in reply to Hidden]

My PSA is close to 3 now. It was 2.66 3 weeks ago. My MO put me in for a PET scan and I will get it if approved and consider it if I have to pay out of pocket. My MO said there's no conclusive finding of recurrence on the scans and I hope it will clarify my bladder issue. Not sure if it will though. He is pretty sure the recurrence is distant based on my history and I guess if they find more elsewhere it might clarify that.

Either way odds are good that I'll be back on ADT soon. My hope was that if it is still in the gland I might have other options but after all the radiation I had not sure what they might be. Either way I plan on making an educated decision so still gathering up info from scans and opinions from as many sources as I am able.

[Hidden in reply to treedown]

It good you have the option to get back on adt . I know we all hate it . There are reasons to use it with a rising Psa . 🙏😔

[treedown in reply to Hidden]

I agree.

[Hidden in reply to treedown]

These crazy ass decisions we are faced with are not easy on us . I’m thinking that you can put it down again . I’m in your corner . F pc

[treedown in reply to Hidden]

Down, but not out I suspect. But there's amazing stories of survival with PC out there and I really think I can be one of those. Part of my false hope is better than no hope at all strategy.

[CAMPSOUPS in reply to treedown]

Its good news , bad news but as you said you kind of saw it coming and of course it could be worse. As Scott said I too think you can put the PC down again and for quite awhile. Hopin for the best for ya.

[treedown in reply to CAMPSOUPS]

Thanks for all the good vibes all I am taking them all in.

[Tommyemily]

Carpe diem !