Did anybody have adjuvant RT after RP ?

I saw 5 (!) doctors after RP - Rad Onc and Urologist at Mayo, Genitourinary Med Onc at Orlando Health (my local doc), Rad Onc at Sloan Kettering in NY (my wife's insurance has a special program w MSKCC for consults), and a French Med Onc at a reknowned cancer center, because I was establishing myself as a patient in France where we have a place.

All of them said **wait and see, and that they don't do adjuvant RT** even though they pretty much know BCR is going to occur. The only "dissenting opinion" among the 5 was the genitourinary med onc, who said I should start ADT + Erleada, specifically mentioning 2 out of 11 lymph nodes positive in the post-surgery biopsy. It was a difficult process tbh because I wanted to go with the genito med onc's advice, but it was contadictory to 4 other doctors at very highly respected cancer centers. And I asked every one of them about adj RT and ADT.

Of course the genito med onc was right. I had undetectable PSA jump to .1, then .37 in a very short timespan. Was able to start the Orgovyx/Erleada regimen right away because I had all the meds approved ahead of time.

Rad Tx comming up in about 3 weeks, but I am back to undetectable now. Long answer to a short question, but that is my experience. No adjuvent RT.

@smoore4

Thanks so much for you detailed answer, it is very much appreciated ! It is sooo hard to find a similar case and compare notes, so I am doubly grateful. The fact is that only about 2-5% of all cases are "high risk" aggressive cancers and of all those only about 10% will have adjuvant RT so I have really no reference in "real life" scenario. All that I could find were scientific papers (trails) and unfortunately we do not have means to travel or seek different opinions, nor we have time to wait for second opinion at local second biggest center since wait time for appointments in CA is 2-3 mos for any medical service. We literary clawed out app. with RO and still are waiting for MO app. to happen. I know that every case is different but at the same time there are some guidelines and recommendations and I am looking for those. We have zero direction from our doctors and we have to make all decisions ourselves - they will do as we wish at the end, but now we have to decide "what to wish for" . This whole PC production and protocols that shift from hospital to hospital and even from doctor to doctor in the same hospital makes no sense, honestly. How is person to know what is really the best course to take when even research papers do not agree ???

Would you please tell me for how long did you have undetectable PSA before it started rising up ?

Thanks so much in advance and thanks again for finding time to post this 🌺

@surftohealth88

I keep my clinical details in my bio. just click on @smoore4

I basically had ~3 months undetectable before having pretty rapid increases, but caught BCR rather early still.

It was the Decipher test that really got me thinking about adjuvent radiation therapy, specifically:

"Decipher high-risk patients treated with radiation had superior outcomes when it was administered earlier and at lower PSA levels (< 0.2 ng/mL).2,3,16,17"

The graph from the Decipher report shows a direct correlation between starting RT early and 5-year risk of metastases. Nearly all my docs told me that I stood a very high chance of BCR, so, I was thinking "Hey, I am going to get this anyway, so why not get this out of the way when 1) I still have excellent commercial insurance, and 2) I am definitely below .2." No doctor agreed with that though, mainly because you don't know when BCR will occur, or even if it occurs, and the longer you can go without possible side effects from RT, the better. I understand that.

Steve

@smoore4

Thank you Smoore4 for additional information 🙏. Yes, Decipher is very important factor and my husband has the highest score of 1 , believe it or not.

Yes - it is very tough to swim "up stream" and argue one's case with doctors : (. Even when they agree one is constantly second guessing the decision and worrying that if something goes wrong they will say : " I advised otherwise" , although they advised us erroneously two times already and because of that we ended up in this position.

It is great that you got Erlanda too, there is not hope that we will get it. I think we will even have to fight to get Orgovyx instead of Lupron.

Thanks again for replying and I am wishing you easy and uneventful radiation treatment with 100% success in complete and forever eradication of PC ! 🍀🍀🍀

@surftohealth88 Hey Surfer, I thought that you DID want to do adjuvant treatment and not wait…is that still the case or are you reconsidering??
Orgovyx shouldn’t be a problem to get unless your ins co won’t pay for it…not surprising at $2800 for 30 day supply. They paid like 75% of mine so I still had to pay the other $700/mo.
I decided that since I am an old man now I may not have many more opportunities to ‘treat’ myself to the better things in life so I went for it.
How long would hubby be on Lupron anyway - more than a year?
Phil

Will send you pm : ).