64 and recently diagnosed with prostate cancer, options?

Sorry you're joining this group!
My husband got diagnosed a year ago after a PSA of around 300, then biopsy showed gleason 8and 9s and later PSMA PET scan showed it all over his body!
He (very reluctantly) started the triple therapy, in his case it's monthly Firmagon shots (he doesn't want to switch to Lupron) then daily Zytiga and prednisone pills and he did chemo over the summer.
After the chemo ended (which was 6 months after the first PSMA scan) he had another scan and it showed GREAT improvement, on the first one he had dark spots all over his body, now it's maybe 3 small spots, still in bones and lungs and prostate, maybe also lymph nodes, but everything is a LOT less and smaller. Though we know it's just for now, with stage 4 it won't go away..... and Dr. said the PSA will probably rise again after 18-24 months but so far it's declining tiny bits each month and is at 0.24 maybe, last month it was 0.33, so slowly going down after the initial drastic drops.
Of course it sucks to be chemically castrated- say goodbye to sex life! But I told my husband I'd rather have a husband and no sex life, than a dead husband and still no sex life! so.....
He's okay otherwise, eats pretty perfectly, exercises every day and you wouldn't know he's terminal by looking at him! But it's SO stressful, knowing that your days are numbered and it's sooner than you expect!
Hang in there and welcome to the unfortunate club!

@lwhines I'm near Savannah too, went to urologist there, had old fashioned random TRUS biopsy. I went to Mayo clinic Jacksonville for treatment and thank God everyday for that!

Thanks for reply, did you just call Mayo them and tell them you wanted 2nd opinion? All I got was a simiple biopsy report, a pamphlet and appt to follow up in 2 weeks for options which is on 29th.

I called on a Friday afternoon they asked my to send biopsy report. They called me back Monday and give me an appointment to see doctor.

@lwhines I was concerned because Savannah didn’t want to get any imaging. I asked several times. They said I didn’t need it. I asked how would you know how wide to cut they said a predictive non gram. I immediately called Mayo. First thing Mayo doctor did was order a 3t mri to identify lesion location.

Good to know, thanks. I'm calling now.

@saganjames
He’s already had a biopsy so the MRI time is way past.

That’s this point a PSMA pet scan is what it’s called for.

@lwhines my names is Jim Woods. Look me up on Facebook and message pm me if you have any questions on my experience. I’ll shoot you my #

One big predictor of better outcomes for any cancer is a willingness to fight. Things seemed hopeless for me in 2021, but I told my oncologists I wanted to fight, and would put up with whatever it takes. They listened to me.

Well..

Others have provided solid feedback.

A starting point may be to start learning the language, terms and their definitions. It's an alphabet soup but if you want to have graduate level dialogue with your medical team, then you cannot be having the "deer in the headlight" look about ADT. ARI, PFS, RPFS, PSADT, PSAV, IMRT, HIFU, Proton Therapy., PARP Inhibitors...

Next up, be one familiar with the baseline science - the clinical guidelines such as NCCN, AUA...these should be the starting point for discussion with your medical team.

After that, read up from patient centered sites...two I use (among many others) are Prostate. Cancer Research Institute and Prostate cancer Foundation, they have invaluable patient centered education resources.

Understand that there likely is no single "right" decision. There are "good" decisions..

Surgery could be a good decision
Doublet or triplet therapy could be a good decision.
The addition of radiation to doublet or triplet therapy could be a good decision...

You get the idea...the underlying principle that may drive a decision is "high risk PCa may necessitate aggressive treatment choices.". Do not underwhelm your PCa or it may overwhelm you!

My experience says applying the science to one's own clinical data, or as I call it, the art of medicine, is a good way of approaching treatment decisions.

As others have indicated, a PSMA PET may be useful in informing the discussion and subsequent decision between you and your medical team.

As others have indicated, you may be around a while, cured, maybe, managing this as a "chronic" disease, possibly.

I'm going on 12 years, high risk...only three of this years have been on treatment, the rest off. I'm on a break from doublet therapy, 20 months now, labs yesterday showed no change, PSA stable at .03. It's likely at my consult with my oncologist we'll talk about our vacations and agree to the time of our next labs and consult. I may be bold and go four months, that would take me to a two year treatment break.

I was 57 when diagnosed. The words of my urologist still "haunt me, "Kevin, you have prostate cancer and it's aggressive...!" Talk about a shock to the system! I had my pity party then got busy .

My options then were binary and sequential, each destined to fail, death the outcome.

Today, you have a plethora of choices brought about by medical research, combining treatment and bringing them forward in the disease state vice waiting for failure and castrate resistance. Heck, even the castrate resistance state has choices!

I'll close for now, you have lots of homework to do, get to reading. As always, come back up on the net, members on this forum will share their experience, knowledge and insights from the "school of hard knocks!"

Kevin