Second Opinion????? Recurrence Post RALP

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.

Thank 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

@edinmaryland It’s a real shame what’s happened in health care - the pursuit of $$ over excellence and compassion is just disgusting.
Patients have been reduced to MyChart passwords and SSN’s and staff doctors are pawns rushing from room to room, often overworked and underpaid; forget the backbone of the entire industry - nurses!
The corporate higher ups have more regard for the cleaning crew than the men and ladies who make health care happen.
Sure, we’ve all encountered a handful of the exceptions, but the grind and drudgery of practice today will drive away those who truly have a calling and leave a vacuum to be filled by the less qualified and others who have no business caring for patients.
Phil

You need to do research yourself and be your own advocate. It's your body and you need to be able to show the doctors that you have a good grasp on all the treatments available.
John

@29modela Dead On, brother…you have to let them know that YOU know, otherwise you become just another sheep being possibly led astray.
Phil

@heavyphil @29modela

SO true !!!
But it is WRONG that that is the case : (((. We should go to a doctor and expect and GET the best care and not be forced to be our own "doctor" 😠 !

It would be the same as bringing a car to the mechanic and than telling him what to do and what to check and how to fix it , or going into airplane and telling a pilot what commands are the best to use and what route we prefer over the Alps so perhaps he should go little bit left and on higher altitude ? !

This is INSANE but unfortunately necessity nowadays and somehow we are OK with it ??? 😔

Also, what % of patients has knowledge, resources or even strength to do all this that we are doing here : (((( ... I am sure about 1%. Doctors should be doing their job, they are not volunteers for god's sake - yes they are very busy, but so are all working people ! I am sure nobody would take under-cooked burger home from a restaurant to cook it properly (??!!!) - right ! It would be returned to a cook promptly and full refund asked ? No ?
I know I would .

@surftohealth88 Yes, I am going to reserve judgment on my particular situation until I actually talk with them. I may be misjudging the situation. I have contacted U of Mich for a second opinion, but they want a referral from my primary care physician, which is not required by my insurance. The endless hoops are maddening.

You ask...

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:
They followed NCCN and AUA guidelines at the time, September 2015, SRT when PSA hit .2 15 months after surgery followed by an 2nd increase three month later to .3

* Field selection:
The SRT was to the prostate bed only, 39 IMRT, 70.3 Gya

* Use of ADT
At the time, the SOC did not include systemic therapy...though, Mayo had been collecting data on BCR and it indicated in high risk patients with BCR, the PCa more often than not had already gotten into the pelvic lymph node system, ergo, the treatment was not just the prostate bed but included the whole pelvic lymph node system and short term systemic therapy, six months.

Also—did anyone pursue a second opinion between major centers, and did that change your plan?

I did not, should have.

You will find answers all over the map about what to do. I read a recent article that said at PSA .3 or less, systemic therapy was not a difference maker.

What to do?

Well, the clinical data points towards high risk...so, consider an aggressive approach.

What would that look like?

SRT to the prostate bed.
Whole pelvic lymph node system radiation
Systemic therapy - ADT, likely in the 18-24 month range...

Is chemotherapy in play, no, for high volume.

Is an ARI in the picture? Possibly.

Which ADT, Lupron, Orgovyx...Which ARI, discuss with your medical team.

Kevin

I had a very similar diagnosis late last year with RALP in February 2026, then monitored psa post RALP psa rising to .2 in about 10 months. Urologist recommended Salvage radiation therapy but then PET scan showed slight spread to pelvis. Urologist recommended Orgovyx and Nubequa with local radiation for pelvis node. I then decided to go to Mayo for a second opinion sharing all my data for their review. It was a good experience for me. They validated the proposed treatment plan and even complemented my urologists summary diagnosis. This gave me great comfort moving forward. 3 months later PSA is near 0 and testosterone continues rapid decline. Fully engaged in diet and exercise and new lifestyle it offers. Keep charging!