The long road

Posted by joe48 @joe48, Jun 30 8:25am

Diagnosed at 48. 14 needle biopsy, all 14 100%. Initial PSA 48. Gleason score 9. I wanted surgery. After 4 denials from cancer treatment centers the Mayo agreed to surgery. I started on Firmagon for 7 months to stop growth and reduce PSA prior to surgery. Total open procetimy and 60 lymph nodes removed going up abdomen halfway to chest. After a rough bout with cylous acides, Lupron for 4 years. Came off Lupron. 6 year’s remission. PSA started to rise 10 years post surgery. Back on Lupron. PSMA scan found active cancer in prostate bed, mid body near gallbladder area and upper chest behind breastplate. To wide an area to use radiation. Xtandi for a year. Side affects to much for me. Current treatment Lupron every six months and abiraterone acetate daily pill form. Now at 61 starting to consider quality of life issues. This is short version believe it or not! After 13 years on this journey, first time posting anywhere. Anyone have similar experiences?

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kmat | @kmat | Jun 30 2:18pm

Dear Joe,

I'm reading your post amid a heavy rainstorm pounding against the windows. I can only doff my hat to you. I've never seen such stamina and grace under such difficult conditions. I have nothing to compare. I realize cancer is serious business. Now I realize what a long, lonely road it can be. I wish you a good quality of life into the future.

stevecando54 | @stevecando54 | Jun 30 4:23pm

I have no idea what you are going through, I'm only one year into this journey. I surely understand about the side effects of meds. I have two that I've had since the beginning, you wake up every morning hoping they are gone but that is not the case. I can only mention that you have come to the right site. Keep coming back, you will receive so much support and hope. I come every day to read others are going through what I am and it gives me encouragement. Easy for me to say keep up the fight but I'm not in your shoes. I wish you the very best on your journey and please keep checking in. best to all.

kenhorse | @kenhorse | Jun 30 5:07pm

Diagnosed at 68 with Gleason 8 in August of 2022, with 6 out of 12 biopsy samples positive (all on right side). PSMA showed nothing outside of prostate so I opted for RARP and was scheduled for surgery end of November that year. Caught the flu 2 days before so had to reschedule to January 31st of 2023. Pathology downgraded Gleason to 7, clear margins and lymph nodes

I'm pretty much dry now but ED continues. Past 2 PSA tests < .005. All things considered, I'm glad I opted for surgery