Posted 9/13/2019 10:00 AM (GMT -7)
Grandpamarv - hi there. I haven't been on the forum in a while, but just ran across your thread(s). You're doing a lot of good research, and getting some good information from many here. There are some knowledgeable folks here!
The G9 Crew threads were something I started a few years ago as a gathering place for those of us facing this diagnosis. The G9/10 cases are a different animal due to the prevalence of the wonky Type 5 cells. The few studies you'll find about such cancers indicate the Type 5 cells are a serious concern. I found a few studies that were rather sobering, so it's good you're hitting it hard. There are so few such cases that they get lumped in with other types so studies can show conclusions, while blurring the distinct differences the Type 5 cells cause.
Mine was diagnosed in 2013, G9 5+4, stage cT3a, core involvement similar to yours (high %, a couple 100%). And, like yours, relatively low PSA. Mine was 4.1, then 5.2 six months later when I had a biopsy. That's not technically "low", ie less than 2.5, but by most measures it seems rather low given what I had. The low PSA is considered by some the result of so much Type 4 and 5 cells, that don't make much PSA since they're so degraded already.
Analyzing recurrence is similarly tricky. If PSA isn't a real good marker for us, how do you detect recurrence? I've found no good answer. They'll say it's not recurrent until the PSA exceeds 2.0 after primary RT (ASCO's "Phoenix" criterion). But, if you know your original case didn't put out much PSA what makes them think yours has to get to 2.0 to be recurrent? I personally think that's way too late for cases like ours. Anyway, that's nothing you need be concerned about right now, just mentioning it for reference.
Also just FYI, my RO didn't want to do brachy with me either. In Vanderbilt's experience the potentially improved cancer control wasn't worth the risk of urinary strictures. They're a regional referral center, so they see people with such complications regularly. Significant urinary strictures can be quite problematic. If you already have some voiding concerns, brachy may deteriorate that. I get a lot of grief when I say anything cautioning about brachy + IGRT here, since the forum groupthink is that is the only way, the most effective way, the awesome way. That enthusiasm is followed closely by those cheering the hypofractionated SBRT approaches, whose value may be less clear for very high risk cases.
Some of this is why I haven't been on the forum for a while. But I saw your entries, and our cases are so similar I wanted to respond.
Here's hoping your fiduciary marker placement is a non-event. I found it much like a biopsy, but less uncomfortable and only 3 pokes (sometimes they do 4 since one might migrate).
Radiation is a marathon. As others said, it's really important to be consistent. Empty bowels, comfortably full bladder, every time. You have some time to practice, and get yourself on a consistent pattern. They'll do a planning CT scan after your markers are placed, and build the treatment plan around that. Have your system in that condition for the planning session, and the same every time. They make some adjustments by verifying where the markers are each time, but you definitely want to be consistent.
All the best. I'll check back periodically. We G9/10 folks need to support each other, as the other variations are quite different in their risk, treatment, and outcomes.