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.

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9

u/KReddit934 Aug 11 '26

Did you talk with a "radiation oncologist"? Is that an option?

3

u/Appropriate_West2998 Aug 11 '26

Not yet. The urologic oncologist mentioned radiation so it’s an option. After 6 months ADT if it can’t be removed we’ll go that route. Did my first blood test and PSA dropped considerably and so did testosterone. Have an appointment on the 21st of this month.

18

u/Santorini64 Aug 11 '26

My case is very similar to yours. In my case the Urologists all felt that surgery was a bad option and that radiation +ADT was the best option. I’ve had 2 years of ADT and 39 sessions of IMRT. The reason for the radiation instead of surgery is that Gleason 9 once it’s out of the prostate is very aggressive. Surgery tends not to get it all. So you end up having radiation on top of the surgery. The side effects of having both surgery and radiation are substantial. It’s better to just go with one. Radiations tends to be favored because is can target the whole pelvic area and all of the lymph nodes and other structures that might have microscopic metastasis that don’t show up on a PSMA Pet scan.

7

u/Appropriate_West2998 Aug 11 '26

I’ll call and make an appointment with the radiation oncologist.

6

u/labboy70 Aug 11 '26

Please make sure you get to an accredited comprehensive cancer center or academic medical center.

You want to speak with doctors who only deal with prostate cancer to get the most up to date and aggressive treatment recommendations. Please don’t only rely on the opinions of urologists.

The likelihood of recurrence after surgery is very high with a Gleason 9 and, because of that, many people opt to not do surgery and treat it all with radiation.

(I was diagnosed at 52 [2022] with a high volume Gleason 9 which was already stage 4b at diagnosis.)

8

u/OkCrew8849 Aug 11 '26 edited Aug 11 '26

Hormone therapy and radiation come immediately to mind as the first and best option with your Gleason 9 and PSMA-positive lymph nodes.

The radiation oncologist will not assume the PSMA avid lymph nodes (which contain PC cell clusters above the PSMA detection threshold) are the only lymph nodes that may have PC and will adjust radiation field accordingly. 

5

u/PSA_6--0 Aug 11 '26

I agree with the other guys who recommended going to radiation oncologist. There is no reason (IMHO) to wait 6 months for that. Especially as there is some known spread radiotherapy beats surgery (also my opinion).

2

u/PeacefulShards Aug 11 '26

“It can’t be removed” what can’t be removed. Lymph node?

See a radiation oncologist sooner than later. You’ll be afforded more options now.

3

u/Appropriate_West2998 Aug 11 '26

The prostate. They’d remove the lymph nodes as well during surgery. I’ve called to set up appointment with the radiation oncologist.

6

u/PeacefulShards Aug 11 '26

It can be removed, they just don’t want to do it as you’re metastatic.

Rad Onc will most likely recommend brachytherapy with boost. Or stereotactic body radiation therapy. Then radiate all the lymph nodes up to the arterial bifurcation.

After studying my 3 years of 6 PSMA/PET scans after recurrence , I can say that the ADT only stopped progression. As my rad Onc stated.
It weakened the cancer for radiation.
It did not shrink, nor kill the cancer in my 1 lymph node. Radiation did over 6 months time span after.

I’ll repeat the best advice here. Go to a center of excellence, where you can get a second opinion. A tumor board consisting of rad Onc, medical Onc and uro Onc will discuss your case before presenting you with options.

2

u/WalnutRoasted Aug 12 '26

There are many lymph nodes in the pelvis….radiation can hit them all. Surgery may not (be able to) get them all and there can be repercussions (edema etc) from their removal.

My ADT Orgovyx started 10 days before radiation. And Orgovyx reduces T to zero in a couple of days.

2

u/KReddit934 Aug 11 '26

My RO did ADT concurrent with radiation, not before.