One of the ROs I've had a consult with wants to do salvage rad soon (Post-RP PSA is north of 0.1). However, he wants do the SRT w/o ADT. His rationale is that if we do ADT concurrently, there's no way to tell if the SRT was working. Plus, he says that if the SRT fails, then I'll be in the same boat with ADT anyway, so why not wait? He also says (I think) that the greater success rate of SRT+ADT is more of a statistical side effect and isn't really indicative of greater success.
Is he onto something here? Any opinions about this are greatly appreciated.
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ElRanchoDePoisonIvy
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If you look at the NCCN standards of care, if you have persistent PSA after a prostatectomy the SOC is ADT + abiraterone AND salvage radiation. This recommendation is based on a number of clinical trials. I had persistent PSA after a prostatectomy and I am doing radiation, ADT and abiraterone.
You have high genomic risk, so of course you need adjuvant ADT with your salvage radiation.
His reasoning is flawed. You will certainly know that your salvage radiation worked after your testosterone recovers. If SRT fails, you will be in a completely different situation - you will no longer be curable. As you see in the review above, it isn't just retrospective statistics, it is from several prospective randomized clinical trials we know it works.
It probably won't make a difference in your expected life span, but it will make a difference in whether you have to live out those years plagued with painful metastases.
You have to do your own risk/reward assessment. Let me introduce you into mine:
1. Risks
1.1. Second cancer risk due to the irradiation, 15.5% in the following 10 years. I am 10+ years older than you so my risk is half that of yours (at 82 it will be 31% for you, it can be cut down to 1/3 if protons are used instead of photons). Source: acsjournals.onlinelibrary.w...
1.2. GU and GI (grade 2, 3 and rarely 4) side effects aka long term late toxicities, figures from multiple sources less than 10% but not 0%.
2. Rewards
2.1. Five year "cure" rate. 30-65%, figures from multiple sources (50%-50% as a ballpark). A negative PSMA PET scan can provide a ~10-15% extra going forward reassurance over blind irradiation (my personal estimate). healthunlocked.com/prostate...
2.2. Average time to non-progression gain: 3 years according to this small trial from Japan JCOG 0401. This trial is more illustrative of your RO's recommendation as they didn't use any hormone treatment until sRT had failed. The two arms are: "A" or SHT (Salvage Hormonal Therapy) i.e. Bicalutamide monotherapy to be followed by a LH-RH agonist when the former failed and "B" or SRT +/- SHT Salvage RT to be followed by SHT when the former failed. Interesting to note that in the 5 year RFS (Relapse Free Survival) and OS (Overall Survival) outcmes arm A scored better than B!
Last, my personal strategy can be dubbed as the untested arm "C" of JCOG 0401, i.e. Adaptive Bicalutamide monotherapy to be followed by sRT when the former fails: healthunlocked.com/prostate...
TTF = Time to Treatment Failure, BCL = Bicalutamide, RFS = Relapse Free Survival
with respect, your RO is an idiot if he seriously proposes depriving you of the synergistic benefits of ADT alongside SRT for no other reason than wanting to carve a notch on his bedpost if he manages to cure you with radiation alone.
I was in a similar position to you except Decipher was 0.91 and there was SV invasion. I did eSRT at PSA 0.12 + ADT + aberaterone, and remain undetectable 4 years later. You’re lucky that the trials have now been done to prove that this is the right way to go - I was making it up as I went along. If you RO doesn’t know this is what is required, you probably need a new RO.
Not trying to hijack this thread but your info is encouraging to me. My husband had RP almost a year ago and PSA was rising post-op. Decipher 0.94. He started ADT about 3 months post-op, then did 39 doses of radiation. He’s on Orgovyx with abi and pred now and PSA is undetectable. We’re hoping that when he comes off them, there’s a chance for a long period of undetectable! How long were you on ADT?
To ElRancho — I’m not nearly as knowledgeable as many on this site, but I have seen too many stories of men whose oncologists chose less aggressive treatment than the SOC and it went badly. You should look for another RO.
I only stuck the abi out for eight months - it really was hard in terms of the physical weakness and emotional impact (Prozac helped), and my Oncologist, who had never been optimistic about this off-label abi in the first place, said he thought I’d probably had whatever benefit I would get. But I kept the ADT up for a dose period of 12 months, and it took another eight months for T to recover, with a further 4 months to get back to previous levels. My Oncologist now says that he thinks we may have a cure and that in a year, when it will be five years post-T recovery, he intends discharging me.
I hope your husband has similar success - for what it’s worth, I kind of think it will come back one day, but I’m not so frightened now….
So only a year on ADT? Despite your SVI? I’m guessing you had no positive lymph nodes? We were hoping for a shorter duration on ADT, but my husband had SVI and a positive node, so he’s following this plan for 2 years. Sigh.
Good luck! Hope you hit that 5 year mark disease-free, and beyond!
Hello - yes, no positive nodes. Only three removed, but they were clear.
We started out aiming for 18 months or more, but I was really busy and didn’t focus on exercising, so the ADT/abi really got on top of me… depression and weight gain, the latter of which I’m still failing to deal with.
My husband did salvage radiation without ADT, however he did reach a PSA of 0 after RP. It rose 9 months later. In addition he had 37 lymph nodes removed during his RP which were all negative for PC. Lastly his Decipher score was very low. We are three years out from it and he still has an undetectable PSA.
I had RP 10/19. PSA at 6 weeks was .01. PSA at 3 months was .03. I had a DECIPHER test that showed high risk disease. I did RT 6 months post RP with no ADT. I was advised at that time that at very low PSA, ADT could do more harm than good. Thank God my PSA has been .00 since, but I’m getting my 6 month check next week. So far, so good🙏
I just happened to see this study on phasing of ADT w RT...it did not fit what I was looking for but seems to be apt for your situation. Right now I am post RP - RT - 21 months of ADT and looking to see when / if my TET will recover...consider this aspect in your decision. This study at least appears to conclude that it makes no difference...but think about how long you will be on ADT. The longer you on the hormone the longer you will wait for TET recovery and 30% of us will never recover...
Of course our #1 focus is living, fighting the cancer and surviving to complain about the after effects, but we need to make sure we are getting the right treatment at the correct time in the proper sequence...so hard to do this as our doctors are really busy and for many 'one size' fits all...but that is where we must take charge of our treatments, get 2d n 3d opinions, then choose what we think best...
My RO did not agree on me going on an additional 2 years of ADT following RT...I had 6 months of ADT before IMRT (68 Gy)...I eventually stopped ADT 15 months into the 24 months treatment; had enough of living without TET and my PSA control was really good while on ADT. Also, in the 4 months between the end of RT and the start of my 24 months of additional ADT my TET recovered fast; came roaring back to 279 in 4 months...then back to almost zero on ADT...meanwhile my PSA was uPSA low never rising about 0.008 ng/dL...so for 4 months I was 'cured.' This was one advantage to not getting ADT during RT! It allowed me to know that at the end of RT I had TET recovery and no PSA; that is what your doctor is telling you. I am glad I did it that way if not I would have never known that my IMRT was successful.
Also, check this study out for the HR (hazard ratios) for LDRT (low dose radiation) plus LTADT (long term)...its dramatic at 5 years. The combo of LDRT and LTADT do work...you will pay a price, but it appears effective...Rick
PS my PSA was 0.13 at the start of IMRT. I am also glad I acted fast. Now my Decipher was a whopping 0.97 so I had a very lethal cell type that could not be messed around with. Do you have genomic testing on your cell type...it makes a difference on how aggressive you need to be in treatment. Check this out...Rick
Thanks Rick. Really good to get your perspective. My Decipher was 0.66 btw. I had not realized that TET doesn’t come back for 30%. So did you have ADT while your RT was going on? Or just afterwards? They are proposing 6 months of it for me, and I’m on the fence. It’s a tough call.
I had 6 months pre RT ADT...then nothing during IMRT...then 4 months break before starting my 2 year ADT during which my TET bounced back fast...now after 15 months of ADT at month 3 my TET is 3, three, tres...really, really low...I hope and pray that it comes back...then if my PSA does as well I keep going...if not then I am fortunate to be cured for some time...could take 10 years plus to show back up. With surgery we are really not ever out of the woods for a decade or more...
Pay attention to both TET and your ED status...brother after ADT and RT your spontaneous erections are gone forever...consider getting an implant sooner than later...you will lose size every year you wait...see my post on this. Rick
PS make sure your dry going into RT...I was 1 pad or less and am still 1 pad or less...I will leak rest of my life; was my choice...TNX
3. That hurts. I’m going to have to give this a lot of thought. My TET is currently around 550, but permanent ED because of the RP. My poker hand hasn’t been that great but my one good card is I’ve been dry since 5 months after RP. I’d hate to lose that with the RT but there’s little choice at this point. Good luck getting your T restored. Is TET replacement an option, or is it considered dangerous?
...that was my point in the reply above...if your TET recovers on its own your RO and MO think thats great, all is 'normal.' BUT if your TET does not recover and you want TTR testorone therapy they go nuts and deny you this as its 'pouring gas on a fire.' Well which is it! Is TET good or is it bad...so to answer your question, if you dont get it back normally no one will give you TTR as its not part of the SOC...even though there is lots being developed on why zero TET is not a necessary goal during PCa treatment. I have written a lot about this; check it out on my thread.
If I were in your shoes now I would focus on 1) do you have active PCa cells in your fosa, 2) will you need sRT, 3) will you take ADT during or after sRT and 4) how long will you stay on ADT? More than 6 months makes you a candidate for permanent TET loss and / or months and years needed to recover it. 6 months you can get TET back fast...
I disagree that 0.66 is a high Decipher score...wish mine was .66. You are above average, but not high risk as I am at 0.97. If you decide on hormone treatment see what happens after 6 months of ADT...take 2-3 months off. Watch as I did to see if your TET comes back and your PSA stays down...if its down, wait...it it stays down bingo. If it comes back go back on 6 months of ADT...intermittent treatment may work.
Check out other forms of TET blockers that dont shut down your TET production, only block its use...cant put my finger on the terms here...but Lupron is a killer for TET future production after 6 months and its a permanent end to your erectile function. It will save your life and take something away at the same time...got to handle it right. Rick
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