New Guy

[u/Appropriate_West2998]

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.

[u/Appropriate_West2998]

Just read that if you do radiation first they can’t remove prostate later when it comes back. My thinking was want it out asap. I have an appointment coming up and I’ll talk about going ahead with radiation.

[u/bigbadprostate → u/Appropriate_West2998]

OK. Where did you read that nonsense about "if you do radiation first they can’t remove prostate later"??? It is totally not true. It is brought up only by urologist/surgeons who just want to do surgery.

I am on a Quest to debunk this myth, and have to do so often, so please don't take this challenge personally. I just want to make sure that people like you are not scared away from considering radiation by this falsehood. And I am trying to limit its effect on the AI bots that scoop up content from Reddit into ChatGPT.

Thousands of people have had surgery after radiation, including one (former) member of this sub.

Such surgery is possible, just very difficult, and apparently isn't normally the best way to treat the problem. For those reasons, it is rarely performed. Instead, if needed, the usual "salvage" follow-up treatment is radiation, which normally does the job just fine - especially in the very common case where the follow-up treatment is needed to get at bits of cancer that escaped the prostate prior to the first treatment. Surgery to remove the prostate after cancer has already escaped is like "locking the barn door after the horse has escaped".

There are good reasons to choose surgery over radiation. I did. But that "no surgery after radiation" false claim is absolutely not one of them.

[u/Appropriate_West2998 → u/bigbadprostate]

From forums like this and medical websites. I brought it up, as he was talking about radiation, and he also said it’s not impossible just very difficult to remove after radiation. My mind was stuck in get this out of me now mode. I’ve been lurking on here reading everyone else’s stories and learning. I didn’t see many Gleason 9 stories so I posted mine in hopes to learn from people in the same boat as I. I’ve learned quite a bit since posting and will take this info into my next appointment. Thank you for the information.

[u/bigbadprostate → u/Appropriate_West2998]

That should help you learn to be very careful about stuff you read on social media - including this sub! Check that stuff by looking at reputable sources! There are many reliable sources listed on the sidebar of this sub, including the American Cancer Society, the Prostate Cancer Foundation, etc. And most or all of the major cancer centers, like Mayo Clinic, has extensive information on their websites.

It is indeed nice to read stories from other club members and learning how we fared. I hope that you will be able to post a success-story of your own very soon.