Thanks for all the suggestions following my first post. I fixed my bio. Background: RP in 2016 followed by 8 years <0.01. PSA went to 0.08, 0.12, and 0.11 in 2024. On Orgovyx since 1/1/25, PSA now 0.02. MO's plan is for "standard" radiation in April and continue ADT for a total of 8 months.Question: is radiation the best treatment vs brachytherapy vs Tulsa Pro vs other treatments ?
Thank you all
i dont think anything that needs a prostate (tulsa) can be done after rp. brachy would be an option if prostate bed is confirmed as recurrence site but why do that with guided radiation available?
Agree with that Now street -air. Thanks
Have you had a scan ?
Had a PSMA scan, no Mets.
Is waiting for a target not an option ?
I had RALP in 2015 and Gleeson was upgraded to 4+4. PSA dropped to <0.01 but at 6 year it climbed to 0.2. I then had 5 PSMA scan over the following 12 months without a definitive target found. Advised to wait until I hit 0.6.
At 9 year post RALP I hit 0.66 and PSMA found 2 small target in pelvis. This lead to a course of 5 radiations over a 10 day period. 3 month after radiation my PSA is 0.02. Note that I have had no other treatment or drugs beside the original RALP and the radiotherapy.
I will check PSA again in March.
I have a similar history.
Congratulations on your success Fortran1958. I have a very similar history but not sure I have the stones to hold off treatment. Thanks
Prostate bed radiation is best with 4-6 months of ADT. Those other therapies aren't used for salvage after prostatectomy.
Thanks TA.
Your post is a reminder for many of us to stay vigilant and continue to monitor our disease, or lack of it. You went a long time being undetectable to now have a recurrence. Glad the Orgovyx seems to be working!
My dad had a very similar presentation. RP and undetectable PSAs for 8 years. Then went to 0.3 to 0.4 three weeks later. PET scan negative. He was recommended to do Orgovyx for 6 months and salvage radiation to prostate bed and pelvic lymph nodes. He just finished that and has 4 more months on Orgovyx. Then will trend PSAs again after that. I think that is the standard recommendation with BCR after RP without any other past treatment and with a negative PSMA scan. Good Luck!
Wishing your Dad continued success. Thanks for all the relevant info.
I had recurrence after my RP with PSA peaking at .21 then dropping some. Neg. PSMA scan. I was gleason 9 with high decipher score. Reviewed results of Spport Trial pmc.ncbi.nlm.nih.gov/articl... and decided to have radiation to prostate bed and pelvic lymph nodes as well as short course ADT. PSA has been undetectable since then (2 years ago)
Thanks FlyJ. Did you consider waiting for PSA to increase or waiting for a target ?
Yes.....to both those two things. There are several reasons I pulled the trigger "early": gleason 9, high deciper, and spport trial showing better results with lower psa levels. Also starting when I did allowed an easier short drive to treatment (summer in Michigan) allowing me to finish treatment before our seasonal winter stay in Florida.
If I have a second BCR, I plan to wait for a target to show itself.
Wouldn't the best treatment be the one that gets all the cancer? As I learned with my salvage RT my cancer had spread beyond the treatment field. We knew within months because I had declined ADT. For me the best treatment has been salvage ePLND using frozen section pathology method - coming up on seven years. All the best!
Thanks Nano. ePLND??
extended pelvic lymph node dissection - (lymph node removal surgery). Without utilizing frozen section pathology method, some would characterize as, and perhaps historically accurate, excessive reckless lymph node chasing. I don't disagree with historical characterization, however, I chose this modern procedure to remove known tumor burden and hopefully defer, if not forgo, need for ADT and chemo.
This procedure is not so common in US - I went to Europe for mine seven years ago. Although a few members in this forum are strongly dismissive of my anecdotal experience, I am most grateful I found my way to this procedure.
NH-Guy - I'm following your post with interest. We are also at Dana Farber and they are recommending early salvage radiation for my husbands post RP PSA of .14. RP surgery three years ago 2021 with a 3+4 Gleason. Clear margins, negative lymph nodes. In 2024 he became detectable with a slow climb to .14. We requested a Decipher genomic test and it was .71 High Risk. We went to Dana Farber and they recommend salvage radiation to whole pelvic bed and 6 mo of ADT. They believe the lower the PSA the better chance for cure. PSMA negative. My husband is in early 60s and otherwise healthy. We had second opinion at Mayo that wants us to wait, confirm that the PSA is going to progress to .2 determine PSA doubling and to potentially wait for a much higher PSA to find a target on PSMA. They dont seemed concerned about Deceipher. State the PSA might not even progress - but Im not so sure about that since we were undetectable for a couple of years. They said they cant remember recently even treating anyone this low .14 PSA. It is definitely a controversial area and there is no text book answer. Dana Farber even without a high decipher score likes to treat early between .1 and .2 for higher chance of cure. Right now we are staying the course with Dana Farber. Hopefully the side effects are manageable and we have good oncological outcomes. Seems to be the option we understand the most but definitely scared since there is not consensus. So far I have 2 RO in favor of salvage now; 1 urological surgeon against; 1 MO against, and 1 MO for - so we have one more consult with a MO at UCSF and that's a tie breaker but it will likely just complicate things. I wish you the best with your treatment.
Between the 2 proposed options i.e. sRT now vs wait and see, my personal (odd man out) approach possibly deserves a read. Documentation thread; " An engineer's Bicalutamide manoeuvres"
You've done all the right things so far. I'm going to be following you too. Our circumstances are almost identical except I'm 15 years older. I recently decided I needed a second opinion from MO and RO for the same reasons in your hubby's case. I've been on Orgovyx for 2 months and have tolerated side effects well so far. PSMA was negative. Dana Farber plan for me is salvage radiation to pelvic bed only, not pelvic lymph nodes. I've only had 1 appointment so far and had no foundation to question the plan. I'll keep you posted after my mid-March appointment.There are very knowledgeable people on this forum that can provide solid advice and support.
I hope you get your answer at UCSF. Thanks for sharing and good luck.
so, we had our tiebreaker opinion from UCSF. It was nuanced, but what I got from it is they do not feel we are over treating by starting salvage radiation/hormones now at .14. Their definition of Biochemical relapse is much lower than Mayos. Doing salvage radiation/hormones now with a negative PSMA is from the belief that the lower the PSA, the higher chance the cancer is in the pelvic area in a micro metastatic form. Of course they don't know this for sure but this has been practice for many years. And, while our high decipher score indicates that there is a proability that our cancer could be more aggressive acting, with our other favorable features, it is not an absolute and our chance is likely that it's not as aggressive as the score indicates. Mayos path of using the newer technology of PSMA scans to do active surveillance and find a target is a recent approach, since we didn't have PSMAs available before - there is not a lot of data to support that path yet. So that's available to us, if it fits our risk tolerance or we are not willing to go through hormones and radiation now. But it does seem that will be the treatment at some point. My husband is a fixer, and let's get it done person and he just wants to get this out of the way and hopefully get back to an undetectable status for many years so we can live our life. So we're going for treatment now hoping for the cure or hopefully many years before we have to deal with this again. I pray he cruises through radiation without significant long term side effects. Just wanted to update with you since we are so similar in profile - good thoughts to you with these difficult decisions.
You state the issue at hand much more succinctly than I. Like you, I'm on the ADT/radiation path. My only questions now are standard radiation or proton therapy; and pelvic lymph nodes too ? In theory, proton therapy should have the same outcome with less risk to other organs. I don't think Dana Farber has that equipment but MGH does. I have an appointment with MGH March 13th. I will report back after. Wishing the best outcomes to you and others on this forum.
Did you decide on proton? We are still going down the path of somewhat PSA .15 early salvage photon radiation treatment, especially because of the high decipher and we're praying for best outcomes. I sincerely hope it's coming together for you. 😀. With the current state of the prostate cancer field it is an inordinate burden on patients to discern best options.
Had my second opinion with MO and RO at MGH. Both said stop taking Orgovyx immediately and monitor with PSA and PSMA. They are not sure prostate cancer is back based on my low PSA readings over 2 years (0.12 and 0.11). Also, at 76, overweight and former smoker, I will probably die from something other than PCa . I haven't responded because I don't know which path to take. Sorry I can't help you and hubby but my gut tells me to take proton therapy now.Have you decided against proton therapy ?
Wow - that's a plot twist. Taking all things in I can see where you wouldn't want to treat/over treat if it's not going to progress in your natural lifespan. My husband and I discussed that we might choose active survellance if he was any older, he's 64. Interesting that Dana Farber is more (too?)aggressive. Gives me pause. We have Gleason 7 and a high decipher score so it's scaring us into action now, but I think we could have waited safely for a few more PSAs before pulling the trigger.
As far as Proton, Photon - from the little I've read there is data to show that there is very little difference in toxicity/side effects - but who knows seems like the patient has to question everything! Best wishes for your decision making!
Congrats, it must be a relief to have your treatment decision made. Did you decide on proton therapy?I haven't finalized my decision yet. It might have been easier if I had waited on ADT to see where PSA would go. I didn't get a decipher test, not sure that would add anything. Thankful for your thoughts and comments from others on this forum.
Best wishes to all.
Tall Allan or others on this forum that seem to have some data on photon/proton that may help you in your decision. This thread is only a reply to me.😀
Thank you and honestly I wish it was a relief to have a decision made - but being in the same position as you, with directly conflicting expert opinions on best treatment, it leaves you feeling like your taking an undue risk no matter what choice you make. Frustrated and wary but cautiously optimistic that we can get through this unscathed and with undetectable PSAs! Take care and best wishes to you as well.
I too am a Dana Farber patient. Gleason 9, ECE. Diagnosed 12/18 at 54. Went with an aggressive treatment given the reported aggressive nature of the disease. Entered clinical trial with continuous 10 months of ADT, Abiraterone & Apalutamide. 7/19 RP followed by 9/20 reoccurrence and then ADT at PSA 0.12 (after monthly rise from 0.09 to 0.12) for 6 months followed by whole pelvic SRT in 4/21. Off treatments since and undetectable so far.
JMBJ - It’s really encouraging to hear how Dana-Farber's aggressive approach early on helped outcomes. Seems successful treatment is often aggressive and multimodal. It gives me a lot of hope as we navigate our path. Wishing you continued undetectable PSAs and good health ahead!
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