PSMA PET CT question

If Medicare is going to cover the PSMA PET CT scan (minus any copay/co insurance) then I would do it, if for no other reason it would establish a baseline. When I had my scan last year, the radiologist reported much more than just potential prostate cancer—anything notable with heart, lungs, liver, spleen, kidneys, pancreas, testes, etc.

@chocchip
50% of AS patients end up having to have prostate cancer treatment. I usually hear from people with more advanced cases.

What I have read about is the fact that people with 3+4 and more than 10% four usually are treated. You make a good point about the fact that waiting five years could result in much better medicine being available. If someone shows cribriform or IDC that can be aggressive and probably shouldn’t be allowed to get worse. I don’t think many doctors would let those two options go with AS.

Got to admit though, a guy I know Who has cribriform And a 3+4 with a PSA that isn’t too high and not doubling quickly, has decided to go on AS after having multiple tests. His decipher is very low As are a couple of other tests, he’s taken, So he’s just waiting. Getting regular PSA tests and semi annually biopsies. He’s spoken to multiple well known oncologist who have agreed that he could wait. He’s an engineer with a PhD and just wants to go by the numbers.

@chocchip Some prostate cancers don't create much of a PSA rise. This case may be like that and thus it was a very good thing that a DRE was performed. The Decipher score of 0.35 is a good sign but it's fairly close to the upper limit of low risk which is 0.44. As others have said, it is way better to treat a cancer at 3+4 rather than at higher scores with more cancer volume involved. It's not a cut and dry decision at all, but if it was me, I would go ahead and treat it.

@wwsmith good feedback. Huge thanks. He is at a tricky crossroads. Will see what the urologic oncologist has to say. Q: Have you or others looked into focal therapies such as HIFU? I can look thru old posts I suppose.

@chocchip
The Mayo urologist referred me to R/O. I met with R/O and with my heart failure the surgery option was not even discussed. Just the photon SBRT and hormone. Then hormone taken off after Decipher test.

Then at UFHPTI the R/O agrees with treatment plan and diagnoses but they do proton radiation at UFHPTI. I am not familiar with focal therapies nor were they discussed. I am not sure if the time frame is or was an issue as my PC was back in 2023.

I was never given a recommendation of A.S. from Mayo R/O or UFHPTI. And personally I would not have even suggested it as an option. This is just my personal feelings at time of what I wanted to do for treating it.

@bens1 Interesting. How recently was that first biopsy, leading to radiation? Was it high # of cores that had 3+4 in that first biopsy, or just one or two? Did your docs even suggest considering AS, or was Decipher score / PSA quite high early on?

@chocchip My biopsy was November of 2022. The highest was one core at 25%. Another was 10%. Another 5%. My Decipher was low risk and my urologist did not ask to get it done. I had to bring it up. My PSA was 10.2. Of the 5 radiation oncologists I spoke with, one threw active surveillance in as a choice. My choices the doctors gave me were radiation or removal. I finished my Mridian treatment in February of 2023. FYI, as a thought on PSA, my brother also had prostate cancer worse than mine and he had a PSA of 6.5.

@bens1 interesting and thanks. Perhaps the PSA density was 0.15 or higher in 2022, or PSA velocity was high? Did you consider RP?

Two day old excellent Fred Hutch doctor video:

@chocchip Yes, I studied the various focal therapies when I was first diagnosed. Every single one of them has a very high recurrence rate. You need to view them all as a "kick the can down the road" treatment. See more details here https://www.inspire.com/m/williamwattsmith/about/

@chocchip

The velocity and the timeframe for my PSA at the time was commensurate with what my research showed as warning signs.

Even so, and with checking PSA levels every three months, I would still have been nervous about active surveillance, whether recommended or not. Every body is different and no doctor can guarantee what happens in that time frame , Where they are checking to make sure that nothing has progressed.

There is also a time period between when one decides a particular treatment and when that treatment finally takes place, especially these days, and anything can happen in your body in that period of time.

Finally, I did consider a removal and although you will hear many stories on this site about successful removal, I felt the process, the recovery and the potential side effects, for me, were not worth the risk.