The Gleason 9 (and 10) Crew - Welcome and how ya doin'? (Part 3, continued thread)

Thanks for the update, Artistic one! It's good to stay in touch, to see how we're doing.

For the edification of others, this is a link to the 20 minute audio interview with Dr. D'Amico about the fairly recently published paper that's been in another thread on the forum. A couple of points stand out... first, it may not really be possible to "over treat" a G9/10 case, and second that most of the PCa deaths actually come from this subset of all cases. This is why I've been so focused on trying to find studies specifically separating G8 from G9/10 when looking at treatment plans and outcomes.

Surgery vs Radiotherapy in the Management of Gleason Score 9-10 Prostate Cancer and the Risk of Mortality

(Edit: Adding a link to the study abstract: Surgery vs Radiotherapy in the Management of Biopsy Gleason Score 9–10 Prostate Cancer)

Post Edited (Redwing57) : 1/9/2019 11:40:50 AM (GMT-7)

Being G9 (5+4) these studies are interest me.
It has been suggested by some that one should not focus so much on studies after treatment and there can be some validity to that. But , I believe that those of us that are in the very high risk group (G9/10) may have a different opinion.
Let me be clear. I would much rather not be in this group that consists of less than 10% of all PC dx. In fact guys that have a G9/10 along with a PSA of less than 4.0 at Dx, constitute less than 10% of that 10% very high risk group. That puts me into a very small % of men with very high risk PC. The low PSA aside,my high volume # of G9 cores just adds to that.When you put all the factors together you realize that you belong to a very small group of very high risk guys. I also know that there are guy's that have a much tougher battle going on than I and don't ever want to diminish that fact.
I wish that I could just put this behind me and move on. I try to do that. I try to not think of this cancer and be confident that I don't have much to worry about. It just lurks there in the back of my mind.
You might say reading these studies doesn't help the thoughts that lurk in the back of my mind. They probably don't. But the not knowing is much worse. There is such a scant amount of info about us G 9/10 very high risk guys.
Obviously researchers and Drs, don't know that much about us , (except that 80 % of those that die of PC come from this group,if I understood Dr D'Amico correctly).
It's the "not knowing" that each and everyone of us on this journey must deal with and it can be the most difficult part after treatment. I'm right there...2 years post Rt.... 18 months post Lupron. I'm waiting for the answer. The answer that will allow me to put this behind me but....I fear that might never happen. Or maybe the realization that the answer might not ever come, is the answer.
Just some things going through my mind.....Thanks for listening.

Battle On Brothers!

Ed,
Thanks for the update. Your post gives great Encouragement! Congratulations on continued success.
Mark

Also just checking in. I guess I am most fortunate in that my PSA remains undetectable after salvage radiation. No hormone therapy or chemo. Would appear there are wide variations of aggressiveness of G9 or G10 PCa. Hope everyone does well.

Season Greetings to bro/s of G9 (&G10)
Updating my PC journey
Did my 6 mos blood test, m OK < undetectable

Wishes all bro/s here well, good & prosperous 2019

Northfoot and YK,

Great news! Congratulations!!

I just got my PSA results from a PCP visit, the test was unexpected until next month.

But I'm 9 months out from my last Eligard shot, PSA rising very, very slowly up from 0.09 to 0.10, a year ago it was 0.08. Feeling good about that, but not fooling myself, as soon as my T recovers we'll be off to the races.

But for now, pass the Jack over here.

Mark....
I'm just finishing my first 6 months, I have 18 Months to go....

Happy to check in with another good report-still in the zero club! ADT knocks me out about every 7-10 days(can't get out of bed-foggy for most of the day) but then I get back to working out the next day and keep livin the dream! Always good to see good reports above. Keep it going in 2019......

I thought I would move my future comments here as I thought I might be able to help keep this thread more top of mind for those of us who have especially serious PC. For more details, please look for my earlier thread at "G10 with Mets"

I have mets in 3 places in my spine, both lungs, two ribs and my left shoulder. I began Eligard with a 6 month injection about 90 days ago. I started 1000 mg, of Zytiga and 5 mg of Prednisone about two weeks later. I have also had a full 28 day treatment (7,000 rads) of radiation ending about 3 weeks ago. My RO did not want to Brachy - not sure if that was agod call or not. I have gone form zero Dr's to 4 in the last few months. In addition to a new PCP, i now have a Uro, an RO and, just recently an MO. My initial PSA was 9.8 and no initial T test was taken (still not happy about that). Jan 3 PSA was 0.99 and T was 43.5. Feb 1 PSA was 0.1 and T was 0.2, I guess those are both pretty good but still not quite where they need to be.

I am very happy with all of my docs but my MO has been especially good. (Thanks JNF) At my first visit, he ordered a chest CT - he wanted to get a better look at my lungs and a Foundation One genetics study. At my next visit last Thursday he stated that there were no surprises with my lungs and he would advise neither surgery or area specific radiation. He indicated some of my other treatments would help with them. We had discussed adding chemo to my other treatments but have elected not to do so for the time being. He said that there were some cell mutations in the tumor genetics that could be used as a point of attack for other meds but again suggested we wait for the future on that.

He also suggested that by early summer he would probably put me in touch with colleagues at MD Anderson and suggested that I should be prepared to spend some time there. He didn't think that they would tell me anything that he had not already done and further doubted that they would change any of my treatment plans. He did feel however, that making some connections there now could be of significant benefit down the road for clinical trials, etc. as my situation progresses.

This has been a very strange journey for me. In numerous ways, my experience seems to have been different from many of the guys here at HW. One thing is the G10 score but with a PSA of only 9.8 - it always seemed odd to me. They seem like polar opposites. Another thing is my lack of many of the SE's that most guys talk about. Of all of the common SE's I have read, I really only have hot flashes. However, they have now gotten pretty mild and infrequent. I also do suffer from fatigue but that's about it. I do, of course, have ED now but I actually kind of wear that as a badge of honor. It is concrete evidence for me that treatments are working and it doesn't bother me at all.

Best of luck to all and thanks for this great site.

Artist Mark,
Hypogon.....
That's been working on me for awhile, eventually I'll have to say good bye to the fellas.
But on the ADT vacations, my T starts to come back.
I know when it's rising by the fact that, well let's just say I find the ladies attractive again.
Two years ago my T got up to about 200, then when PSA started to rise it dropped down to about 100.
Last it was checked it was 9, that was 9 months ago.

Are we going to have a new thread soon?

Ai Ordini, Cappo!