PSA is relatively low, but I am having bone pain in my pelvis and spine

[Pianodude]

So here is my background: Dx in May 2020 Stage 4 with widespread mets from skull to knees, Gleason 9. PSA in the 800s. Started out with Firmagon and 5 rounds of Taxotere. PSA went to 0.1. We switched from Firmagon to Orgovyx in August 2021. In January 2022 we added Nubeqa. PSA has held pretty steady around 0.1 - 0.3. In September 2022 took a vacation from ADT and Nubeqa to give me a break and hopefully bring back muscle mass. I also had been having cardiac issues that my cardiologist suspects were made worse by ADT. My last labs after 4 weeks showed my PSA going to 1.7. At my MO's suggestion, I started back on ADT. I haven't had labs yet. I am getting bone pain in my spine and pelvis. I am wondering if I should be getting a scan. My last PSMA scan was back in April and showed that things seem to be inactive. Any thoughts?

[CAMPSOUPS]

Being off treatment looks like PC has progressed. You just started back on treatment (adt+Nubequa) so after a month or 2 under treatment PSA and how your bone mets feel might be all the guide you need in determining treatment working or not.

Progression (rise in PSA etc.) is usually all that is needed for insurance to cover scans but I don't know how that works when one has been on treatment vacation. You definitely seemed to have the justification for vacation considering your cardio issues.

Hopefully your cardio issues and PC can both be treated together from here on out. No vacations from PC treatment.

[EdBacon]

If your PSA is rising and your pain is getting worse, I'd get imaging to see what's going on.

[CAMPSOUPS in reply to EdBacon]

Yes. Then again looks like he was off all treatment for the month of September and part of this month. Just started back up on treatment.

But yea. We all like to see what's going on and if insurance will cover so much the better. And to have bone pain at a PSA of 1.7 maybe scan is best.

[Tall_Allen]

If you just started back on hormone therapy, give it a chance to work. What would you do differently if you saw something on a scan?

[EdBar]

How’s your Alka Phos number? If it’s elevated it could be a sign of cancer activity causing pain.

Ed

[CSHobie]

Taking a vacation had some negative effects for sure. However I have been studying this topic a lot, and the fact that you are losing muscle mass, means you are also losing bone mass.

You may not have an Osteoporosis diagnosis yet, but I believe it could be contributing to your pain. I am a similar situation with excessive pain. Have a look at the video and link below. ncbi.nlm.nih.gov/pmc/articl...

And this video youtu.be/uhXosx7fk_0(Not working as expected?)

[KocoPr]

Hi PD, did you get a scan done? How is your PSA now since off ADT vacation?

[Pianodude in reply to KocoPr]

This was several months ago. My PSA went right back down to 0.1 after I restarted my meds.

[KocoPr]

that’s a relief.