hello everyone. I am new here but I’ve been watching your thread for a little while now. My father was diagnosed with advanced prostate cancer almost 30 years ago. He was 47 at the time. He had a PSA of 104 and a Gleeson of 4+2 at time of diagnosis. His cancer was always androgen dependent and he did quite well on androgen therapy (Lupron) for a very long time. About six years ago, his PSA started to rise quite quickly, and they found a spot in his lymph nodes, so we left the urologist and went to an oncologist at that point. He has been on xtandi ever since with a near undetectable PSA. About six months ago, his PSA started to rise and now is rising at a fairly rapid speed doubling in three months. He had CT scans done that were clear, but he’s never had had a pet scan done. I guess my question would be if this was your situation, What would you like to see the next steps be? do you think a pet scan should be done? He also gets Lupron shots, but we’ve heard that there is a pill more effective. He goes back to the oncologist next month and we would just like to go back empowered with the right questions to ask and up-to-date knowledge on what treatment options might be appropriate for his next steps. Thank you!
looking for input regarding my fathe... - Advanced Prostate...
looking for input regarding my father‘s situation
Yes, my experience says, your father should do a PSMA pet scan as fast as possible. If he never received radiation and scan finds some spots he could either get certain spots or even areas radiated.
Yes. The next step would be a PSMA pet scan.Lupron\Eligard are just as good as the Orogovyx daily pill. There are some minor advantages to the pill but basically if your father's T is <20, the shot vs the pill is academic. To be honest, I recently started taking Orogovyx and sometimes I wish I was still on Eligard...the daily pill is a pain in the ass to take every day. That and it's prescribed 30 days at a time so you have to be on top of another prescription. I think it's possible to get 90 day supplies but I haven't looked into it yet.
Agree PSMA - and taking a pill is small annoyance - very manageable
30 yrs WOW - good for him and all he loves
thank you all! Some additional context that I forgot to mention is that he went in for a radical prostatectomy, and when the surgeon saw that it had spread to a few lymph nodes around the prostate, he left it in and sewed him back up . after that he did go through some pretty intense radiation to that whole region of his body and then once the radiation was complete, he started on the Lupron
You said that he was diagnosed with advanced prostate cancer - where were his metastases and how many? Why didn't he have debulking radiation or a prostatectomy?
it had spread into the lymph nodes so they called it metastatic. The surgeon left the prostate in because when he went to do a prostatectomy he didn’t go through with it after he saw it had spread. He clamped the nodes that were affected. He did have radiation pretty aggressively.
What does "pretty aggressively" mean? Did he have whole pelvic radiation?
I honestly don’t know exactly I was 18 years old when he was going through this and he doesn’t have his radiology records still from that time - like I said it was 30 years ago. All he told me is that they went as aggressive as they could because he was so young, so I had to guess Whatever standard of care was back then for radiation on a 47 year old is what he got. I do know that he said that once the radiation was done, he no longer had a prostate.
I do remember his current oncologist at said that he had good/ extensive radiation treatment. I guess she was able to see some records from then.
Hi !
Perhaps 30 years ago they only did RADIATION or PROSTATECTOMY 😉
"... PSA ... doubling in three months... never had had a pet scan done... do you think a pet scan should be done? He also gets Lupron shots, but we’ve heard that there is a pill more effective..."
Doubling PSA qualifies for a pet scan, and he needs one to determine course of treatment now. . Orgovyx is a pill replacement for Lupron, better tolerated but same effectiveness as far as I know. If he has had no issues with Lupron, I don't see reason to change.
rydemps
Hey congrats to your father for still fighting the beast after 30 years.
As far as a Pet Scan goes Medicare will cover quite a bit of the cost. If you have a Supplement, it will all be covered. Also some Advantage plans will cover all of it, if not most of it. Some will not help much.
On a related issue, make sure you find out just what type of Medicare coverage your father has and do some research on if there are other plans out there that may be more beneficial to him.
I would suggest you get a Pet scan, my oncologist has decided that he will now use the pet scan instead of the Ct and MRI
You ask..."if this was your situation, what would you like to see the next steps be? do you think a pet scan should be done...?
Like others, not a trained, educated or board-certified medical professional, layman, but experienced unfortunate fellow member of this club.
From what you describe, he is on doublet therapy - Lupron and Xtandi, his PSA is rising. That would indicate castrate resistance...
A PSMA PET scan is something to discuss with his medical team.
If you have not, consider consulting a radiation oncologist. Depending on the PSMA PET results, SBRT to any identified sites may be possible. I had whole pelvic lymph node radiation in 2017 and when a PSMA PET indicated a solitary lymph node in 2023, my radiologist was able to treat it with SBRT.
Discuss with his oncologist whether or not chemotherapy is a treatment option.
If you have not already done so, read through the NCCN guidelines for advanced prostate cancer - nccn.org/patients/guideline...
Discuss with his medical team any clinical trials which may be relevant to his clinical history.
If he has not already, discuss with his medical team having genomic testing done to inform treatment discussions with his medical team.
If there's any "good news" to his situation its that he has choices on treatment. Deciding which treatment is in part science such as the NCCN guidelines and part art, trying to apply those guidelines and make a treatment decision based on your specific clinical data.
I am not sure I would say the pill is more effective for him at this point in his journey. It does have a lower CV side effect profile but the other "advantages - " faster to castration, higher sustained castration while on it and quicker recovery of T when stopping may not be in play. There is the matter of the discipline of taking a pill daily vice a shot once very 30, 60...days, and depending on insurance, there may be financial toxicity.
I recall reading on this forum about switching ARIs in his situation as well as chemotherapy resulting in the ARI "working" again. TA would know more about that, others on this forum may chime in.
Kevin
There's a much easier way as I found . DM me.
either a PSMA scan or PET scan should be ordered by your oncologist. I’m glad you switched to one! Good luck!
You can totally control this. Don't let them scare you like they tried to do to me.
I would have an multiparametric MRI, PSMA PET CT, bone scan and a liquid blood biopsy before thinking any further on treatments.
Greetings rydemps,
Where is your dad located (city state) and where is he being treated? Thanks.
Good Luck, Good Health and Good Humor.
j-o-h-n
PSA increase .08 to .15
Trying to decide my next step in my journey and was wondering what advice regarding treatment doctors?
Failing Lupron? What's next?
After 3 weeks on the "BIRM"...STILL FEELING GREAT, but my PSA has bumped up from 0.88 to 1.130 
Anne for Ron
