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Second Opinion????? Recurrence Post RALP
Hi all,
I’m looking for some perspective as I work through the next steps after prostatectomy.
**Brief background:**
* Age 67
* Radical prostatectomy: August 2025
* Pathology: Gleason 4+3 (Grade Group 3), ~80% pattern 4
* Cribriform and intraductal features present
* Extraprostatic extension (pT3a) and lymphovascular invasion
* Negative margins, lymph nodes negative
* PSA: 0.10 about 3 months ago → 0.17 this week
**Current situation:**
I’m being followed at a major center and have PET and MRI pending.
The main question I’m trying to think through is what to do **if imaging is negative**.
Specifically:
* Whether to proceed with **early salvage radiation** vs continued monitoring
* Whether to include **pelvic nodes vs prostate bed only**
* Role and duration of **ADT in this setting**
Given my pathology (cribriform/intraductal, LVI, etc.) and the PSA trend, I’m concerned about missing the optimal window for treatment if I wait too long, especially since I may be a lower PSA producer.
I did ask about genomic testing (Decipher) and was told it’s not necessary at this point.
After thinking this through, I realize I would be uncomfortable if the recommendation were to wait for something to declare itself on imaging. Because of that, I’m wondering whether I should start the process of getting a second opinion now, or wait until imaging results are back.
**My question:**
For those who have been in a similar situation (especially with higher-risk features but low PSA), how did your team approach:
* Timing of salvage radiation
* Field selection
* Use of ADT
Also—did anyone pursue a second opinion between major centers, and did that change your plan?
Appreciate any perspectives or experiences.
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I can only relate my story. I was diagnosed with stage 1 prostate cancer in 2016 at age 70, I'm now 80. I have a defective PLAB2 gene and was exposed to agent orange in Viet Nam in 1970. No family history of prostate cancer. PSA was never higher than 2.3. My lucky break was that my old urologist retired. A new urologist did a full exam including a digital which showed a small lump but no swelling. Biopsy was two 6s and one 7. Two doctors said wait a year and see if there are changes. My wife and I decided immediate prostate removal. Surgeon held us up 4 months before he operated. By the time he operated, my prostate was fully involved, stage 4 with 1.5 years to live.
I fortunately found an aggressive oncologist who did Proton radiation on the prostate bed and ongoing Lupron injections. When discovered in a rib, he did more radiation. Each time my PSA moved above >0.05, a new PET scan and a new treatment. I've had Zitega and Proveng. PSA is now at >0.05. If my PSA moves, even slightly, he'll start a new treatment. If we had followed the doctors recommendations, it would have spread rapidly and I would have died in 2018. Don't be fooled, I have had reactions to the radiation and medications. It's no cake walk.
My recommendation to anyone is to attack this terrible disease with the most aggressive treatment available before it has a chance to spread. I'm living proof of that philosophy.
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14 ReactionsThank you for your strength and information wishing you the very best.
Ray
@diverjer
I really had (and still do ) similar experiences
I was followed by a very nice local urologist however, the small group practice was bought out by an urology chain and patient care went down hill.
I next tried a very renown teaching hospital and got one of the directors of urology. He was arrogant )(but a good diagnostician) and when surgery was on the table recommended me to one of his colleague who had troubling reviews online ( I do appreciate that even some of the best doctors can get some poor ratings but these ratings pointed to both bad patient care and bad outcomes). So I then went to a semi-local one person urologist who had a great reputation for patient care. He did the RARP however after that he detached from my care referring me to others in his office, many times messages and phone calls were ignored most recently I developed an abscessed an infected lymphocyte/Lymphocele following RARP. I was in pain, sweating , fever, shaking, etc. the scanning report confirmed the infection and the office waited five days to call me back. My primary care told me I should have been in the ER and given IV antibiotics.
Like you, I really want to be heard and provided some quality care, I also want as many years as I can get which points me towards the teaching hospitals.
I see considerable room for improvement