I had robot RP 2/2022. Gleason 7. In October, PSA was 0.06, on 12/28/22 it was 1.0. I saw two ROs. One said there was no surgical benefit to radiation before 2.0. The other said it’s better to do it now as there’s a good chance of avoiding hormone therapy later. To me, it seems like my doubling time is rapid enough that waiting seems ill advised. Doing nothing at all seems like a bad idea as well.
Any thoughts are appreciated.
I had persistent PSA after an RP in January 2022. My PSA was 0.39. In April I went on lupron, aberaterone, and prednisone for 24 months. I just finished 32 sessions of IMRT to the prostate bed and lymph nodes that started in November. I believe this is the SOC for persistent PSA.
I had My RP 3/4/22 My PSA 11/4/21 was 11.7
(post surgery). 6/13/22 0.023 8/4/22 0.036
9/21/22 0.04 My urologist suggest I see my RO. We discussed
Salvation Radiation and he said the sooner the better. The fact that it had doubled In that time is reason enough. He ordered a PSMA. No cancer detected
Started treatment 12/1 /22 With a 4 month injection of Eligard.
My treatment plan-
MDDiagnosis: pT3bN0R1 adenocarcinoma of the prostate, Gleason 4+5=9
status post prostatectomy with persistently elevated PSA.Intent: curativeSite:
Pelvis/fossaModality: PhotonTechnique: VMATTotal Dose [cGy]: 4500 cGy
pelvis/2520 cGy boost to fossaDose/Fraction [cGy/fx]: 180 cGyNumber of
Fractions: 25/14 for total of 39Fractions Per Day: 1 fxConcurrent Therapy: lupron.
Yesterday was my half way point. No side effects other than some light fatigue
Occasionally. Cardio work out every day and weight lift 4 days a week.
Crazy journey so far. Hit me like a freight train. But I’m ready for the fight.
Good luck Alturia
I believe you should have radiation ASAP and discuss ADT duration with your RO.
Because of the rapid increase of the PSA discuss having a PSMA PET/CT to see where the cancer is and to help planning the radiation therapy as well as the hormonal therapy.
I should’ve mentioned that I had a PSMA/PET scan last week. Nothing lit up.
Good news. Radiation to the prostate fossa and whole pelvis radiation plus at least 6 month ADT, could be an option to discuss with you RO.
Is your PSA 1 or 0.1? You said:
"In October, PSA was 0.06, on 12/28/22 it was 1.0."
If it is 0.1 you could wait to 0.2 based in the findings of the Radicals trial. The patients had a median PSA of 0.2 at the time of starting RT.
thelancet.com/action/showPd...
sorry. That was a typo. Should’ve been 0.10.
You could wait to 0.2, personally I will get it done ASAP.
Did they say 2.0 or 0.2?
0.2
Much better! Yes - 3 clinical trials have confirmed that it is safe to wait for 0.1 or 0.2.
The long shot is that there is a range around 0.15 +/- 0.03 where the PSA somehow stabilizes. In my case, I saw a rapid change from 0.08 to 0.15 than a gradual decrease down to 0.12 to be followed by a smooth upward trend up to 0.17 where I started taking Bicalutamide. I am documenting my varying dose Bicalutamide 1 year+ experiment in a thread here entitled: "An engineer's Bicalutmide maneuvers".
I don't understand the benefit of waiting. Your lack of any lengthy remission and your PSA doubling time seem like red flags. I wish I would have had my salvage radiation when my PSA hit 0.12 instead of 0.20.
You can see my bio for similar. Persistant fast rising psa after robotic surgery. PSMA scan just showed some uptake in previous prostate space near bladder. Nothing else. Due to surgical margins, S.V and bladder neck invasion the consulted MO and RO in same clinic say treat right away . Had 1 month Casodex and then started 6 months Lupron and am on 25th of 35 IMRT sessions. Punch it in the throat
My husband had an RP in 2001 and his PSA only went down to 1.5. Started a 9 month course of Lupron & Casodex and was in remission until 2019 with just active surveillance. Hormones weren’t a bunch of fun but 18 good years without the side effects of radiation was worth 9 months of hot flashes. We were pleased with the decision. (Now there are newer, less cardio-toxic drugs of course) Good luck to you.
I consulted 3 ROs...consensus was prior to reaching 0.2 and doing ADT prior to start.
Question, was it ever undetectable "<.06" or whatever the lab cutoff was after surgery? I think it may be a slightly different approach if it never went away as in undetectable "<" after surgery. Persistent psa means failure of 1st treatment option and I think it would be early radiation, perhaps hormones but that may be debatable. What was your PSA pre-treatment? Gleason after surgery 3+4 or 4+3? Decipher or genomic test score? Where are you being treated?
Would not wait ,after six years psa hit 0.14 had salvage only no adt yet under care of oncologist at sloan I think that is important >advice recieved from this web site .....why wait what is the point the cancer is back....what was your gl 4/3 0r 3/4.........
if cost is not an issue, get your RRP pathology specimen tested by Decipher, to get a clear read on how long the hormone therapy you need with your eSRT will be. You have a shot at a cure - I would start monthly PSAs to get a better handle on doubling time, especially if Decipher is not an option.
you need a confirmatory PSA before anything, imo
interesting If nothing lit up on psma scan what will be the targets for RO it hit?
Lots of good comments here. I would add that you may want to initiate the prep for salvage radiation asap. Took me a few months to get it scheduled, which took me well over the 0.2 mark given very rapid doubling time.
Sounds like I'd go for it now based on your post.
Don't wait, the treatment is not that big of a deal considering the alternative.
I would hold off rads as long as possible.
You need to get scheduled for a PSMA scan to attempt to locate your PC. This will tell where your next therapy will be and where it might be targeted.
Keep getting PSA testing at least once a month. This will get a handle on your rate of rise.
So your PSA seems to be rising at the rate of 0.1 or much greater per month at this time.
When PSA rises quickly the expectation is the PC will show up better on PSMA scan. 0.1 rise per month isn't that quick, 0.5 rise a month is a different story at low levels.
By the time your PSA reaches 2.0 PSMA scans will pick up PC for nearly all patients.
Most Insurances want your PSA at 1.0 or above for them to approve the scan.
Your now in a different place PC wise after having failed RP. So we don't know where you had your RP. But you want to be seen by a major cancer hospital at this point. Appointments can take some time, so get on the phone ASAP with a major cancer hospital for an appointment, and for MRI and PSMA scans on that same visit.
Get insurance approval through that hospital, Insurance might force you to get a CT and bone scan first before they allow a PSMA scan. So you might get those out of the way ASAP, you can get those anywhere and those you might get done locally. Get those out of the way so you can progress directly to the PSMA and MRI scans on you visit to the major cancer hospital. They will want to see the results of the CT and bone scans.
Thanks for the reply. My highest rate of monthly PSA increase so far has been 0.024/mo. I had a PSMA scan on 12/22, but it showed all clear. PSA may be declining somewhat right now, but am continuing to monitor PSA frequently and am tentatively setting up RT with MD Anderson. But if the PSA numbers keep declining, I may postpone. That's the thinking anyhow.
I started at MDA had a RP there, very happy with the quality of my surgeon, now retired.Wonderful facilities at MDA, nice caring people, which I've found everyway I've been.
My six week post RP checkup showed PSA too high and MDA cancelled planned RT. They said no to finding my cancer with scans. Said wouldn't change my treatment, I knew that wasn't true then and now every doctor knows that wasn't true. Said go on ADT for life, it's terminal.
I was actually then told at MDA that I should go to Mayo if my PC was in lymph nodes. Said I'd live 2 to 3 years longer if I went to Mayo.
They gave me 5 to 10 years, 7 most likely.
I went to Mayo, and have stayed with them, had scans, located PC had radiation, now very low PSA but rising. Only been on ADT for 2 1/4 years of the six so far improving my quality of life greatly
I'm at 6 years, and now being told I have 10 or more years left.
I'll be scanning again in coming months to go at it again.
Second opinions should be sought, actually MSK and MAYO both recommended I scan for PC, and that radiation could be curative.
You've responded well to treatments thus far and it seems to me that you're anxious to do more. Perhaps your still in a fight mindset, try to relax a bit and use your PSA results as your barometer. Enjoy your clear PSMA PET results and declining PSA. You've got this, time to live a little, happy new year, cheers 🥂 DD 😎.
I think you might be on to something there. Happy new year! Have a great 2023.
Your pathology is very similar to mine...I had a recurring PSA of 0.13 after RP and an GS of 4+3 w 60% grade 4. You dont mention some key issues that may dictate early sRT (salvage) like EPE (extensions) or positive margins...but here is my story and you can take from it what helps you make a decision going forward.
First, see my 'woulda-coulda-shouda' list of things I would do differently if by some miracle I could go back...check out what happened to me when I did proceed w sRT and ADT treatment. Pay special attention to the issue of penile tissue health and preserving (not recovering) erectile function.
healthunlocked.com/active-s...
Next, what helped me pull the trigger on sRT was knowing the genomics of my tumor. The way I understand it Gleason is a 'direction' you PCa (cancer) can take and the genomics of your cell are the speed at which you will get there...not knowing how fast your traveling is key to knowing what you should do while your getting to your destination. In my case I had a visual GS of 4+3 and a genetic Dechipher of 0.97 out of 1.0 (effectively a 5+5 equivalent)...that made me opt right away for sRT...if my Decipher had come back 0.50 (matching my GS) or 0.25, then I may have opted for more time (I was traveling down the path to MET slower)...see some good articles and a great map on genomics here;
healthunlocked.com/active-s...
healthunlocked.com/active-s....
Last, ADT will save your life but it does a number on your body...know what is coming and if you opt for this treatment do what you can to prevent, preserve and protect what you have going in...take the treatment if you need it but prepare and defend youself against some of its complications; your Doctors may not tell you all that is entailed. Let us know how you fare...
healthunlocked.com/active-s....
healthunlocked.com/active-s...
Thanks for the thoughtful response. I don't know what EPE is, but my tumor had one excursion beyond the capsule. The surgeon says he had clean margins, but OTOH, he only biopsied one lymph node. There sure is a lot I would do differently if I had known half of what I know now.
What I'm hoping for is the erectile nerves to come back online before any further treatment is necessary. Using the VED daily per doc's instructions, but after 11 months it's still as dead as a doornail. Reasonably continent however, which I'm grateful for. I'm reluctant to give that up by doing sRT if I don't have to.
One thing I read said that the only reason that early sRT shows better survival is because some of those men treated early would never have needed treatment if they'd waited for 0.2, and therefore would've survived without sRT. Seems to make sense, but how many? There's a lot I don't know.
The MD Anderson RO wouldn't exactly say that survival odds would be significantly better with asap sRT, but he said there was a better chance of good quality of life survival. Without mets or hormones, I think he meant.
Since my PSA went above the detect limit in October, I went all out on diet and exercise. eating vegan (which I had nothing but contempt for earlier). I started out only being able to run a quarter mile and now I'm running (slowly) ~ 3 miles most days. My pre-diabetes has gone away, I've lost >30 lbs, and my lipids have returned to what they were when I was 30. The hope was that PSA would respond as well. I can't say whether it's responding, but the current trend is down. Could be diet; could be random.
My wife has been phenomenally supportive. She's been doing this diet together with me, and her allergies have largely gone away and her hip arthritis has gone. She can now go jogging for the first time in ten years. Not trying to sell the diet, just reporting what we've seen.
I'm meeting with a third RO this month as well as with an oncologist with MD Anderson. Since my PSA number is down slightly at the moment I don't feel as much like I've got a gun to my head and can get more opinions before pushing the button. Also, if there is anything to D&E, there may be enough time to see.
I've got an 11 y.o. boy and am very motivated to stay healthy long enough to be an active dad as he grows up and see him married to a good woman.
Again, thanks for your input and the links you shared. Have a great 2023!
I would do 'anything' to avoid hormone therapy. Just my opinion.
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