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PC journey

Posted by johnernest @johnernest, 1 day ago

:
In July 2024, I was diagnosed with aggressive prostate cancer after experiencing leg pain, weight loss, nocturia, and a PSA of 62. A biopsy confirmed a Gleason score of 4+5. A PSMA PET scan performed shortly after the biopsy revealed the tumor had extended outside the prostate, behind the bladder, where it pinched off one of my ureters and damaged my right kidney. Surgery wasn’t an option due to the extent of the disease. I began androgen deprivation therapy (ADT) with Firmagon, followed by long-term Trelstar injections and Nubeqa (Darolutamide), an androgen receptor blocker. I’m BRCA2-positive, so PARP inhibitors may be an option later. As of March 6, 2025, my PSA is less than 0.10, and most of my symptoms have improved. I stay active with daily walks and weightlifting to help counteract ADT side effects, especially bone loss.
An MRI in March 2025 showed significant tumor regression. Based on that, my oncologist believes he can eliminate the remaining cancer with definitive radiation—28 rounds of IMRT to the prostate. Before radiation, they’ll inject a spacer gel and place gold markers to guide targeting. I’ll continue ADT during and after radiation, with the hope that I might be able to come off it down the road.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

jeff Marchi | @jeffmarc | 1 day ago

IMRT may be a little aged to really be the best solution. SBRT can zap the prostate and metastasis with a lot fewer sessions. Are you being treated at a center of excellence? You have a serious prostate cancer case and you need to get the best treatment so that you can have a long life. I would want a Genito Urinary Oncologist handling my case with a Gleason nine, A medical oncologist works with all different types of cancer and can’t specialize in prostate cancer like a GU oncologist.

The question is, is he going to Radiate the prostate bed since you’ve already had the cancer get outside the prostate and mini metastasis are likely to be in the prostate bed, undetectable by a PSMA pet scan. At the latest PCRI conference a doctor made this statement?

“Seeds for metastasis were already there when surgery was done, waiting to grow.”

That sort of reinforces the need for having the prostate bed radiated when cancer has already gotten out of the prostate. Ask you doctor about this.

Was cribriform, Seminal, vesicle invasion or intraductal found in the biopsy?

Are you having the damage to your kidney removed? My wife had a partial nephrectomy to remove an issue with her kidney, Would that be possible or even beneficial for you?

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1 reply
johnernest | @johnernest | 9 hours ago
In reply to @jeffmarc "IMRT may be a little aged to really be the best solution. SBRT can zap the..." + (show)
@jeffmarc

IMRT may be a little aged to really be the best solution. SBRT can zap the prostate and metastasis with a lot fewer sessions. Are you being treated at a center of excellence? You have a serious prostate cancer case and you need to get the best treatment so that you can have a long life. I would want a Genito Urinary Oncologist handling my case with a Gleason nine, A medical oncologist works with all different types of cancer and can’t specialize in prostate cancer like a GU oncologist.

The question is, is he going to Radiate the prostate bed since you’ve already had the cancer get outside the prostate and mini metastasis are likely to be in the prostate bed, undetectable by a PSMA pet scan. At the latest PCRI conference a doctor made this statement?

“Seeds for metastasis were already there when surgery was done, waiting to grow.”

That sort of reinforces the need for having the prostate bed radiated when cancer has already gotten out of the prostate. Ask you doctor about this.

Was cribriform, Seminal, vesicle invasion or intraductal found in the biopsy?

Are you having the damage to your kidney removed? My wife had a partial nephrectomy to remove an issue with her kidney, Would that be possible or even beneficial for you?

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Thank you for that information. I do have an excellent team of doctors, all specialists in PC, also being treated by a nephrologist for my kidney, it appears my damaged kidney is starting to recover.
Doing research considering radiation types, but will certainly look into SBRT.
Thanks again

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