did you have 3 or 4 bone mets killed off with SBRT or HIFU etc and then lived met free without ADT

[lakeerie]

have had my prostate cancer treated by bracky and EB radiation successfully and then 4 bone mets which were already in my blood but microscopic apparently developed after that. They were immediately treated by SBRT . Have taken ADT for short time even though no signs of canacer and low psa, Has anyone stopped ADT after similar treatments without recurrence of bone mets

[Brysonal]

I tried it when my HIFU failed and I first went metastatic with a T1 and third rib met. Had S BRT to both but in my case new mets came and I had to have systemic treatment.

I am clear on scans and undetectable PSA today but had 7 months of ‘throw everything at it’ and still on an advanced hormone tablet.

[lakeerie in reply to Brysonal]

Thanks that is very helpfu Hope you continue to have low psa

[dhccpa in reply to Brysonal]

Still on--Orgovyx?

[Brysonal in reply to dhccpa]

Doing a non standard apalutamide as a monotherapy

[dhccpa in reply to Brysonal]

Thanks. Hope it goes well.

[tarhoosier]

I have not.

My oncologist at Columbia Presbyterian said at some previous visit that he knew of men who had such treatment and went extended periods with no further intervention of any kind. This was to justify considering spot RT if necessary at some future date. When it became my turn to have a spinal met RT and continue Xtandi I asked about his comment we each recalled from a year or two previous and I asked "Am I that man?" He had a different opinion about me and said he would consider eliminating systemic treatment if I reported the side effects were not tolerable. He allowed me to make the choice (it is always my choice). I reduced Xtandi to 1/day because I knew that an off period with circulating T metabolism will create breast growth at the next, inevitable on period. THAT is the side effect I wish to avoid. This is the rare "Choose your side effect" situation.

[lakeerie in reply to tarhoosier]

so do i understand that you had testicles removed and then took a reduced dose of xtandi ?? if so how long and have you had any other treatment like spot radiation (sbrt) I want to do the same but consider bicalutamide as bad reaction to xtandi Thanks so much

[lakeerie in reply to tarhoosier]

I think I confused your situation with another You still have testosterone and have reduced Xtandi Is that a monotherapy and should any bone mets appear you will use spot SBRT etc on them

[tarhoosier]

Yes to your post directly above. T=400, Xtandi varying doses over 7.5 years monotherapy after surgery in 2006 with immediate adt thereafter with a few short duration vacations. RT to prostate bed and pelvic nodes plus a spinal met in 2012 with a 14 month off period with nearly no psa. Two years ago was the second spinal met found with PSMA scan and psa at 0.3, a surprise as the scan was meant for baseline purpose. After that most recent RT was the discussion I relate above.

breast reduction surgery in 2014. Can be repeated and prefer not.

[lakeerie in reply to tarhoosier]

Thankyou and continued good luck

[TJGuy]

So I had 5 mets in pelvis killed by IMRT whole pelvic, I did two years of Lupron with the radiation. This was a couple years after RP. PSA kept rising,

I had SBRT to one pelvic lymph node 4 years later. Still rising PSA leading to SBRT to one more pelvic lymph node a year later (this lymph node was predicted a year earlier, but didn't show positive at that time).

Since that time I've had stable low PSA.

Don't let arbitrary number of mets stop your targeted therapy. Arbitrary is often said as 3 mets, so don't accept that. That number has been rising with more experience.

Get the radiation to kill what you find.

[TJGuy in reply to TJGuy]

Oh so the point here is I demanded my path (test,scan,find,kill) and have lived off ADT and all the terrible side effects.

[lakeerie in reply to TJGuy]

Glad to hear that I also am following your format My last scan showed 4 mets which were taken care of with SBRT My numbers are low and started Orgovyx and Xtandi as insurance Have decided to remove testicles as I am not a gambler and have discontined Xtandi as gave me headaches End result should be no medicine and regular testing and SBRT or ablation should any new cancer arise I am considering a low dose of an androgen blocker like bicalutamide or nubeqa if side effects are minimal Thanks