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Advanced metastatic with Gleason 9 or 10
hi, thanks for reaching out. Although not the same gleason score, I wanted to share this story from one of our patient leaders: https://prostatecancer.net/living/survivor-advanced. Here are a couple articles that I hope can help as well: https://prostatecancer.net/diagnosis/advanced-prostate-cancer and https://prostatecancer.net/news/earlier-treatment-metastatic. Please reach out if we can help you find something else. Jill (Team Member) 
: Had a Gleason 9 diagnosis back in 2012. It has come back several times and treated each time. In 2022, a spot on my hip bone needed a dose of stereotactic radiation. Since spread beyond the prostate is a definition of metastatic, please feel free to reach out if the spirit moves you. My last post-op PSA test just 2 weeks ago showed a score of 0.02 🤞Dennis(ProstateCancer.net TEAM)
I find I don't fit any of your categories. I dealt with BPH for years (about 15), had a TURP in 2006, and was diagnosed with cancer in 2022 at age 74. My PSA had risen from less than .50 following my TURP to over 9.2 at the time of the successful biopsy (my third as the first two found no cancer - but the MRI showed an anomally). My Gleason turned out to be a 9 and I opted for an RP and told the surgeon to take out any surrounding tissue he thought appropriate. The tumor was bulging out the side of the gland, and so he took surrounding tissues, nerves, and all local lymph nodes. We both fully expected to find that the cancer had spread. But, all tissue and nodes were negative, and now 3 years later my PSA is still undetectable. My aftermath was extreme incontinence, and 18 months with a pelvic floor PT gave me modest control. At month 21 I opted for a sling to be inserted around the urethra and have gained good control. Reading the literature and watching the seminars I understand that I am a bit of a Unicorn, but other than staying up to date on developments in treatments for recurrence, not much of what I read or watch on Youtube applies to me. I had great surgical care (MD Anderson Cancer Center in Camden, NJ), and have since moved to CA to be near kids and grandkids. Getting established here was tricky, but I am pleased with my encounters with the systems thus far. I get a fresh ultrasensitive PSA test every 6 months and remain "cancer free" at present.
: It's great you are in remission 👍 and continue with routine follow-up testing. Do keep us posted, Dennis (ProstateCancer.net TEAM)
