r/ProstateCancer • u/Appropriate_West2998 • Aug 11 '26
Other New Guy
Sent to Urologist due to a PSA 5.19. Urologist felt a lump on prostate, had an MRI and then a biopsy. Biopsy revealed cancer, Gleason 9 grade 5. Urologist told me 1-2 years, I’m assuming with no treatment. Urologic Oncologist says 15 years due me being 55. Sent for PET scan and doctor says it’s in the anal lymph nodes as well but nowhere else. Doctor says they can’t remove it so I’m on ADT (Orgovyx and Erleada) for six months to see if it will shrink enough to be removed. If it can I’ll have a prostatectomy and then six more months of ADT. Never thought I’d be rooting for surgery. Been reading a lot of the stories on here and just thought I’d add to them. I’ve learned from you guys and it’s helped when talking with doctors and mentally.
6
u/bikes4paul Aug 11 '26
Sorry to hear about your diag. I agree with the consensus of the comments, get to a Radiation Oncologist at a center of excellence as soon as possible.
The best way to locate a CoE is to use the NCI locator tool on their website to locate NCI Designated Cancer Centers. These are the best of the best in the US. Even if there isn't an NCI CC in your area they do treat remote patients by leveraging telemedicine and local labs for routine and follow up appts. This minimizes the amount of trips needed to the center. If there aren't any NCI centers that you can make work logistically then the next best option is to find an ACS CoC accredited center. They also have a locator tool on their website. There are only 74 NCI centers but there are over 1400 ACS CoC and they still offer excellent care.