Knowledgeable (Experienced) Opinions Sought

[6357axbz]

Trial I’m currently participating in includes oligometastatic HSPCa Patient’s on ADT. Control group gets IMRT to zap primary tumor (prostate gland, and in my case seminal vesicles), and ADT. Extra treatment group gets that plus individual Mets zapped. I’m in the former group. From the start I was told that, being in control group, after completion of IMRT, once I went on an ADT “vacation” and my PSA (now at 0.1 and declining) reaches 2.0 them my mets would get zapped. Now I’m told during my latest consultation with my RO, that once I go on ADT vacation and PSA climbs to 2.0, then my mets would get zapped only if I have no additional Mets discovered by CT and bone scans. If that’s the case no zapping. I feel like I’ve been misled. I would have liked to be in the extra treatment group after randomization but I felt I would at least get my mets zapped at some point down the road. Any thoughts are appreciated. Thank-you.

[GP24]

They probably will not zap the mets if you are no longer oligometastatic, e.g. have more than 5 mets. Difficult to tell how many mets will be there when you reach 2.0.

I had a Lu177 therapy when they detected more than five mets. That zapped them all.

[6357axbz in reply to GP24]

What’s your current status?

[GP24 in reply to 6357axbz]

healthunlocked.com/advanced...

[Fairwind]

The way they look at it, if new mets develop, then trying to eliminate them with radiation is a waste of time as they (mets) just keep coming and they can't treat them all...Getting Radium 223 treatment or Lu-177 in a trial might be a better choice for you..Remember, you can drop out of a trial at any time with no penalty...

[GP24 in reply to Fairwind]

The mets will usually keep coming after a Lu177 treatment as well. This kind of radiation is not limited to oligometastatic patients though. I believe that you should combine radiation to the prostate and mets with ADT, I think this is more effective than just ADT.

[NPfisherman]

Seems a bit unfair to me....any chance you could switch to the other group.?? And why is adjuvant radiation not being added?? I know it is all part of the test both groups and see the difference for the good of research, but not good to end up on the wrong side of research...

Fish

[6357axbz in reply to NPfisherman]

That’s what I’m thinking fish

[NPfisherman in reply to 6357axbz]

Your call.....stay....don't stay....with a chance to do adjuvant radiation and perhaps, attempt to get in the oligometastatic disease and stereotactic radiation trial listed on page 4....

cancer.gov/about-cancer/tre...

Good luck, brother....

Fish

[GP24]

What is your alternative if you leave the trial? You could get your mets zapped if you find an RO that will do that. I do not know where your current mets are, but many doctors will refuse to do it. They think as Fairwind wrote: "a waste of time as they (mets) just keep coming and they can't treat them all". So do not drop out from the trial before you found an RO who will radiate your mets outside a clincal trial.

[Fairwind in reply to GP24]

If you have pain or claim pain, that's reimbursable and RO's reluctance diminishes.. But they will just nuke the worst mets which is better than nothing..A quick shot of SBRT...

[6357axbz]

Thank-you all for your thoughts

[6357axbz]

Well Nal, in all fairness, at least this trial allowed me to get my prostate zapped. As I understand it that is beyond SOC for mHSPCa and I would not otherwise been able to get it.

[6357axbz]

Thanks Nal. This is my first experience with a trial. I have mixed feelings as well. I did look into the trial that Fish recommended (above),

Stereotactic Radiosurgery in Treating Patients with Oligometastatic Disease

I emailed a Dr Heron with my basics to confirm my eligibility should I decide to go that route. Keep my options open.

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