Newby with GS 10 but PSA 3.16

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.

Greetings again, Grandpamarv.

Redwing is offering great advice about prepping for radiation. My husband, who had 11:00 AM radiation sessions, got in the habit of making a fruit packed smoothie with an immersion blender every morning to get that plumbing going.

I'm also grateful to Redwing, whose stats are like my husband's and yours, for adding nuance to the brachy debate. We were on such information overload at the time of my husband's dx, we chose radiation and ADT. But I always wondered whether brachy with ADT would've given my husband a better shot. Now I can stop thinking about woulda, shoulda, coulda. He sure didn't need a possible uretal stricture in the mix.

Again, as I mentioned elsewhere, down the road see about getting somewhat more frequent bone or other scans as a way tracking your high Gleason, low PSA cancer. We, and our oncologist, had the shocker recently that the blood test numbers looked good, but the bone scan showed a huge number of mets over the scan taken a year ago. We're still waiting on results of Guardant360 test which will guide chemo treatment.

Greetings, Grandpamarv.

I'm sorry you have so much going on in your family simultaneous to your facing your high-risk PCa and treatment. It's a lot to handle. Plus the computer crash. I hope you feel free to share all your questions and reactions to your treatment. It's good to have you back in the Healing Well family.

GPM - I can not be much help with the family issues, when it rains, it pours sometimes. You will feel better after you get the family caught up on your situation. You have a pretty simple explanation right now, diagnosed with PCa and going in for radiation treatments for a couple of months. You really don't have to talk about the rest much until someone goes of the rails about having the good cancer, etc. then you try to behave.

The results of my genetic testing came back in about week after blood sample draw when the counselor called me.

GPM - Good news for everyone even though sometimes you are looking for a cause of this nasty disease and a DNA defect would have given you something to blame, at least that was my feeling after mine was clean also.

Settle in for the long journey now. The first week is the toughest getting drive time and preps figured out, you will be running and jumping up on the table and out of there in 10-15 minutes before long if they are well organized. My whole visit could take 15 minutes if they grabbed me as I was sitting down, round trip from home in less than an hour sometimes.

Good luck with the family and good luck with the twins, we had twin boys and a good friend is grandfather to twin boys and really enjoys them. Must be easier not being the parents vs. grandparents. Twins tend to come early so be prepared for that also.

GPM - Great to hear, very similar to my ART experience as I was only 15 minutes from treatment facility also and never even picked up a magazine.

A few things for the rest of your journey. The machines do have issues from time to time (yours is new as I recall) but you may get delayed and asked to show up later in the day or some other scheduling change. Wrecks havoc with your prep routine as I found out.

Sooner or later they will probably recycle you to fill your bladder up a little more or tell you that there is too much gas or something in your colon. Just some things to keep you on your toes so every day is not the same.

The only side effects I had was a rash early on from the radiation (I must be quite sensitive now) and some serious tiredness towards the end and for a couple of weeks after completion. Because I had surgery, I also had some odd bladder feelings near the end and afterwards but nothing significant.

The clock stops the last week and it seems like it will never be over. I was just waiting on my last day for the phone call about a delay that never came then when I got there, waiting for the machine to hang up during the second pass. When it was over, I just drove home and moved on to the next item on the to-do list.

Hope your experience is uneventful and treats you well.