Proton Therapy or Cyberknife without ADT for Gleason 8?

They can also do Tulsa Pro, as long as no spread. But Tulsa Pro is still cash pay, roughly $30K. Otherwise Proton seems good if your insurance covers it over other options, one can also decline ADT.

We met with a Tulsa Pro doc - it would be $45k and there is no data about success with Gleason 8. But it sounds miraculous - could be the future. For those of you on the east coast, we know someone w/ Gleason 7 who had it at Yale in 2021 with great success (and I think insurance might have covered there).

Well the data for a real lot of the treatments is sometimes old, and by the time it is published the protocols change. Such as proton, Mayo does 5 sessions, but data on it is not out there from publications from the way they do it. It is still on my list of possibilities I might select even without publications. There is always risk. Tulsa with G8, all there is is going to be personal accounts such as on YouTube or other discussion boards. $45K sounds a lot more than I was quoted. Medicare will have a code for Tulsa in 1-2 years, I don't think for this coming January medicare changes, but is entirely possible. Much more likely Jan 2025 medicare changes so it would be insurance covered then but unlikely paid by insurance before that though some charges might be covered as standard hospital costs or whatever.

My thinking is Tulsa G8 can be repeated on other areas in a recurrence. Unless you went to some guy that said whole gland which isn't repeated. They can take out exact amounts (usually they mention some clock pattern with Tulsa). However Proton one drawback is it is not repeated for a recurrence as far as I understand, they just give ADT or external beam or some other options on recurrence/mets.

I can't say on cyberknife, I did read a few threads but not sure on that option.

Very helpful, thanks. Tulsa for my husband would involve the entire gland (maybe that's why it's more pricy:). Doc wasn't sure about exact cost so $45k could have been a high guesstimate. The procedure is new here, so he would probably travel to a center with more experience, but it's probably too risky. We're waiting for Decipher and second biopsy opinion from Hopkins, so maybe that will change things.

I’m 74 with two 8 cores and two 9. No spread as per nuclear bone scan, PET, and MRI. I had robotic surgery at Mayo on 7/10. Also removed lymph nodes, sems, and vans. All were clear as were bladder margins. I feel good about my decision and am recovering nicely and improving continence daily. If I have problems down the road, all radiation options are open. Radiating first basically eliminates future surgery, as I understand it. I can live without a prostate as long as I’m also living without cancer but I realize everyone and every case is different. Praying for you as you work through this decision.

Your husband, 71, G8, PSA 8, PSMA PET no spread looks a good candidate for proton therapy. You know I am not a doc, right?

Hormone therapy should always be an option, not a given! You know I am not a doc, right?

I had. PSA of 18 and my doc said the data didn’t really support the use of hormone therapy.

Thanks not a doc! Did you have G8?

7 but the number has no teeth without a “number of cores positive” reading.

A high 7 and a low 8 may not be that different.

If it were me I would like to see the studies that support the use of adt with those numbers.

I suggest to you that those studies are very hard to find.

Husband had 9 of 18 positive cores, four 4+4. Waiting for Decipher and second opinion on biopsy from JHU, but I doubt this is a 'low 8.' Time is running out - he's feeling ok about the scheduled RP in 3.5 weeks.

I'm trying to find Proton without Lupron studies, not much luck.