49yo G9 (4+5), Stage 3b, PSA of 11.8. Any G9’s still alive 10+yrs?

Age 49 @ Dx May’22
location: Austin TX , Tx location: MDA in Houston
Sep’22 started ADT (Fermagon & Lupron for 2yrs)
RT: Planning 39 x Proton tx starting in Jan’23

No SE prior to Dx, Bx 8/16 cores + all on left side G9=5+4
3T MRI & PSMA scans show PNI+, SV+ on left side, LN-
Stage: 3B

Date: PSA score
6/16: 2.3
5/19: 4.3 (no testing in ‘20 or ‘21 due to Covid)
5/22: 8.8
7/22: 10.5
8/22: 11.8 (started ADT with Fermagon shot)
9/22: 2.2 (got 3mo Lupron shot and started Erleada)

Haven't quite reached ten years, 9 years out this month.
Not cured but doing very well with control of disease.

Will be ten years in October 2023.

I was diagnosed at age 50 with G9 and had surgery then SRT with Lupron (details below). I was terribly worried about my life expectancy during those days. I made myself sick with worry, in fact. With the help of my priest/counselor and a therapist at the cancer center I went to for SRT, I pulled myself together and moved forward with a plan to attack the cancer with everything at my disposal: the best doctors, the best facilities, and an aggressive treatment. Please stay strong mentally and physically as you forge ahead with treatment. Wishing you all the best.

Not too many years ago it was thought that aggressiveness was determined solely by the Gleason grade of one's prostate cancer. Genomic testing of the RNA in cancerous lesions tells us differently: the risk of metastasis (low, intermediate, high) cuts across all Gleason grade. Looking at the distribution of Decipher-test results, about 10% of men with confirmed, prostate-confined G6 (3+3) disease are nonetheless high risk for developing higher-grade lesions and metastases withing 5 years, whereas 30%, 22%, or 7% of G8-10 men are low risk for metastases depending on whether they are pT2, pT3a, or pT3b/pT4 after surgery, respectively. I had a low-risk Decipher result even though I was G9 (4+5); my met risk is low although it is not zero. We can also say that local aggressiveness (spread to adjacent structures) does not always mean high propensity to form metastases.

Djin

I was 44 years old when diagnosed. I had some of the same questions and feelings that I’m sure you are having. I’m now 57 and have been dealing with it “intermittently” for 13 years.

My diagnosis was similar in 2013. I'll be at 10 years next April, and expecting to still be doing fine. My path has been a little convoluted, but at present I have No Evidence of Disease (NED). When first diagnosed, I was very concerned indeed, and as others have said we probably have had similar thoughts and concerns.

The information on the internet is all over the place. You have to be careful looking at the age of the studies, who commissioned and performed the studies, what cohort (the people studied) was in the studies, and on, and on.

With today's treatment plans, you are likely to do well. Even with G9 cases, a majority actually do well for a long time. There's hope! All the best as you go forward.

(Oh, and regarding the "triple play", opinions are mixed. It seems to give somewhat better control in a number of studies, at some increased risk of side effects (especially "urinary strictures", a narrowing of the urethra making it hard to pee). The method has some vocal supporters. The cautionary voices are quieter and stay more low profile. Consider it, discuss it with your doctors, and keep in mind things are rarely clean-cut with this disease and its treatments.)

I was a 4+5 gleason July2009. Prostatectomy + radiation +lupron+ Zytiga was 67 now 80.

Not 10, but 7 (feels like more than 10!)
You are getting treatment at one of the best cancer hospitals in US and you should do well with your treatment choices. There are so many tools in the treatment bag now days, with better scans for diagnosis and locations, better radiation techniques, and great immunotherapies and drugs. You should have many more years ahead of you, way past 10 years. It seems most guys just deal with either the side effects of treatment or intermittent recurrences (not trying minimize that there are dangers to this disease and it can be deadly). I wish you luck on your treatments! Keep us updated. Take care. -JR