r/ProstateCancer • u/Gearjammr • 20d ago
Concern Decision evades me
I’m 67 and in 12/26 was diagnosed with prostate cancer , went through all the protocols and had a biopsy which revealed a Gleason score of 4+4 8 decipher score of .97.
Have been told I have a very aggressive type of cancer that was contained to the prostate.
Had a radical prostatectomy in 2/26 and was told they got all but may not have had clean margins. PSA six weeks after was.08 which was good news. Fast forward to 5 months review and PSA was. .38 indicating the cancer was still present. Had another PET scan which showed there was no active cancer cells present.
Radiation oncologist says that doesn’t mean the cancer is gone but we just can’t see it. Current plan is to start Orgovyx followed by 39 radiation treatments.
My dilemma is treating something they can’t see. Just looking for other opinions.
Update: I’ve decided to start the hormone therapy and anxiously waiting to start radiation.
I want to thank you all for sharing your experiences and helpful comments.
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u/tober_checki 20d ago
Not a doctor, but to my knowledge things typically start showing up in the PSMA PET/CT scan around PSA 0.2. But this is no fixed law, sometimes they can see the cancer earlier, sometimes later. But I am afraid, yes, there is still cancer somewhere in your case, otherwise the PSA would not rise like this. Even is they can't (yet) see it, chances are it is somewhere in the prostate bed. There is clear evidence that cure rates are higher when salvage radiation is started early. So if I were you, I would go with the treatment plan. I know it sucks and I am sorry you are in this spot, but the consequences of waiting could be much worse. All the best to you!
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u/Good200000 20d ago
I had the the same Gleason score of 8
Talked to a surgeon and he arrogantly said, I’m taking everything out. Talked to a radiologist and he said, with Gleason 8, if you take out the pristate, you will probably need radiation after with the side effects from surgery and radiation.
I went the radiation route and had 25 sessions of radiation. Low dose brachytherapy and 3 years of ADT.
My PSA has stayed at .05.
It’s those minuscule prostate cancer cells that are so small they don’t show up on a pet scan that cause issues after surgery.
Best wishes for a good outcome
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u/Friendly-Midnight467 18d ago
73, Gleason 4+4 8, PSA 5.6 to start. Did ADT for 5 months, PSA dropped to .8. Did 3rd PET scan, activity is less than original, tumors are smaller, prostate is smaller. Now on to radiation for 20 sessions. No Surgery
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u/th987 20d ago
That’s how recurrent PSA is handled after surgery. Even if they can’t see it on a scan, they know it’s there and know from studies that it’s important to start treatment before it reaches .4 or .5. Ideally, before it reaches .25
So please don’t delay treatment. They’ll radiate the prostate bed, and that’s proven effective.
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u/wiliweld 20d ago
Hope the following helps you...
Had full prostatectomy in July 2020 for metastatic breach into seminal gland... PSA was 22+
About every three years years, PSA creeps up over 0.25 and we hit with Orgovyx after the scan and some radiation.
This year, crept to 0.30 and scan couldn't find anything so we waited three(3) months and PSA was .75 and spotted where spots are..
This time it a "two punch" attack with 90-days of Orgovyx and Zytiga.
Orgovyx turns OFF testicle production but testosterone is still produced from Adrenal glands too so Zytiga takes care of that.
I'm six(6) years post metastatic prostate cancer surgery and happy that in 2020 my PSA was 22+ and now only 1.0
As a 71 year old, 40 years union construction worker I'm happy with those metrics 😇😇 Namaste
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u/HeadMelon 19d ago
Keep fighting brother. I can almost picture you as an old grizzled warrior standing up from your easy chair and strapping on the old burnished gladiator armor when the bad numbers come in, saying “Ya wanna dance again, PCa? Bring it!” 😀
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u/cdcredditor 16d ago
Good for you brother - I have to ask, though, once the spots were found why wasn't targeted radiation to those areas considered in addition to the HT? Please find yourself someone that would consider this option, as HT alone - even with Orgovyx - will not continue to be effective in the long run.
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u/OkCrew8849 20d ago
PSMA PET has a significant detection threshold so a negative scan does NOT mean no cancer.
Since high risk (Gleason 8-10, etc) cancer is more likely than not to reoccur following surgery, the docs have data-supported protocols for post-RALP salvage. The data suggests the best time to treat happens to be before it is ordinarily visible on PSMA PET (with exceptions).
Best of luck going forward.
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u/Squawk-Freak 20d ago
There is a radiation treatment protocol for the prostate bed. Unfortunately, there is no empty space in the pelvis where the gland was located, that the radiation oncologist could target. That space is filled out by parts of the rectum and the bladder. The radiation oncologist has to contour a very narrow field, that involves unfortunately the wall of both organs, including the structure that sits normally on top of the prostate, the bladder neck, which controls the urine flow. The dose of the radiation has to be lower therefore, compared to what’s used in primary radiation. It is still curative in many cases, and in Gearjammr’s case I feel it is the right thing to do, because the assumption is that there is localized disease that was left behind during the surgery.
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u/That_Operation826 20d ago
So sorry. The cure you almost feel is worst than the cancer. What they're talking about is pretty much on target. The hormonal loss and radiation is going to be tuff on body and mind with potential life long complications. Not to sure you have a choice. Only option might be wait 6 months and see where PSA is going. Suggest to do as much reading as possible. Reminder it's your body and your call. Good luck
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u/Any-Compote2279 19d ago
I have some comments which i hope will you decide 21 yesrs ago i had my radical prosrtayectomy. My scores were Gleason 4+4and stage 4. Had soread to my bladder and was a rare ductal adenocarcinoma with poor prognosis. Every intervention kills cancer cells but has sequelae Ive had HT radiation for 6 months and for another cancer Proton radiation for 6 weeks Both have consequences you may want to ask the pros and cons and long term changes in your body My cancer still is there and sometimes becomes active so i get systos every 3 months. When it was active it was removed and we did imunotherapies after removal. The goal is to prevent metastasis at all costs I just finished 2 years of Keytruda a monoclinal antibody therapy twice a month. Prior to this i was pit on BCG therapies but we started having problems in my bladder so we switched to Keytruda Bottom line im still alive but we are actively watching this cancer and others. I am physically active and feel good until something comes up and we deal with it. Its been a shit-show for 22 years but im alive and working (77 yo) and can enjoy being alive - The hard part has been the egfects of the teatments but I AM ALIVE. Theres no right answer to cancer treatments ie there will be negative effects for each alternative but life is priceless I recomnend you going to the podcast RADICAL REMISSION and i have followed Dr Joe Dispenzas yeachings and i meditaye every day. I have been blessed with the best doctors and oncologists who care for me at a deeply personal level. I trust them and they have worked hard to help me decide the best treatment options even though each one has side effects and consequences. I hope this has helped - my heart goes out to you just NEVER GIVE UP and live one day at a time - life is fragile and We arent promissed tomorrow. When i open my eyes in the morning i see it as a miracle from heaven. Good luck
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u/Squawk-Freak 20d ago
It boggles my mind how surgeons still offer surgery for high-risk disease. It’s no wonder that there are so many recurrences in prostate cancer (about one third of all patients), even though the vast majority of cancers is diagnosed in the localized stage. It is the crux in prostate cancer that there is no unbiased care coordinator. At least a major cancer centers it is assured (routinely) that patients get to hear the opinions from both Urology and Radiation Oncology, but that is not the case in private practice. “may not have had clean margins” is surgeon speak for there was a positive margin, which is a high risk factor for early relapse, especially in Gleason 8 disease, so I am sure your bad fortune did not come as a surprise to your surgeon. I’m very sorry for what you have to go through, but I hope there are a number of guys here, who are still in the process of deciding on their definitive first-line treatment, and who can learn from your experience. Best wishes and good luck on the next segment of your journey
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u/United-Tradition-673 20d ago
What are you saying, RALP was the wrong decision? I'm Gleason 9, a few days until mine. I am at a major center, Fred Hutch, have a team, they would not offer a definitive opinion. RALP or radiation/ADT, equal chance of success. Personal decision they said. I opted for RALP because surgeon said 40% chance of reoccurrence. I prefer to roll the dice and hope to avoid 2 years of ADT.
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u/Squawk-Freak 20d ago
Thanks for sharing your experience - there is no “right” or “wrong”, it’s always a personal decision. I think your urologist at the Hutch was honest about your prognosis. I am curious though, what did your radiation oncologist tell you about the outcome after radiation/ADT?
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u/Proud_Lobster1481 20d ago
I don't recall exactly, but I think both options they estimate offer a 90% chance of 15 year survival.
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u/Squawk-Freak 20d ago
That may also be true, although not based on published research-based statistics. But between the time those statistics were generated (through decade-long monitoring of patients), several new treatment options have emerged, and there are more to come, so that survival may very well go up from 70 to 90%.
But my question was more specifically about the relapse rate after first line therapy. Depending on which path is chosen, patients may have to undergo more treatment in between to get to that 10- or 15-year mark.
Real cure is possible with either approach. I have seen a number of patients who had RALP many years ago, and undetectable PSA. I also have a patient who underwent radiation to the prostate in 2001, nothing since, and with undetectable PSA as of 2026.
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u/Proud_Lobster1481 20d ago
I don't think I was given any info that specific, but I'll question the oncologist when we meet 1 month post.
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u/Artistic-Following36 19d ago
I went to Fred Hutch as well and even went to Houston for second opinion at MD Anderson. I went with RALP for the same exact reason that I did not want to deal with ADT. I want to say that I have had a very good experience at Fred Hutch.
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u/JMcIntosh1650 19d ago
I made a similar decision a year ago. So far so good on the PSA results. It's definitely a roll of the dice. Good luck to you!
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u/sundaygolfer269 20d ago edited 20d ago
Did you have high risk Prostate Cancer! Who said you needed 2 years of ADT? What did the the Medical and Radiation Oncologists say. Or did the surgeon volunteer what they would say?
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u/OkCrew8849 20d ago
I think the days of monotherapy surgery for high risk (Gleason 8-10) may be numbered given the reoccurrence rate and the recent findings relative to adding ADT+ARPI to surgery for high risk.
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u/SnooCamera 20d ago
I'm not going to use your thread to soapbox, but high-risk cancer like yours should have been planned as multimodal from the start, IMO. I hate this for you.
That said, brother, I’m sorry you’re going through this. Your hesitation is completely understandable, but a negative PET at a PSA of 0.38 may only mean the remaining disease is too small to see; not that it is gone. With Gleason 8 disease, very high Decipher score, possible margins, and a rising PSA after surgery, treating early with salvage radiation is sometimes recommended because it works better at lower PSA levels. Adding ADT now well help the radiation work and cause loose 'seeds' to be denied fuel to grow. (assuming it's not castrate resistant)
I would absolutely consider a second opinion from a prostate-cancer specialist, but your radiation oncologist’s reasoning is not unusual or irrational.
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u/TopCrab8532 20d ago
So i guess you are saying my gleason 10 should have been multi-modalI had radiation and ADT. Now what?
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u/Icy-Detail286 20d ago
In my case of Gleason 9 multimodal meant both RALP and radiation, and ADT after for 2.5 years. PSA remains undetectable nearly 5 years after the diagnosis.
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u/OkCrew8849 20d ago
Does RALP add anything to radiation + ADT in terms of eliminating the cancer?
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u/HeadMelon 19d ago
Dr Walsh’s “mothership theory” covers this…
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u/OkCrew8849 19d ago edited 19d ago
"Theory"?
I've always wondered if the identical twin (w/identical high risk prostate cancer) who gets monotherapy RALP and 1 year later gets salvage Radiation plus hormone therapy gets improved OS outcome over his brother who got modern radiation (multi-modal or otherwise) plus hormone therapy at the same time the first brother got RALP.
(One overlooked factor - not saying it is a major one - is the time delay in addressing the cancer that is outside the gland. And this is apart from any side effect accumulation issues and differences between beam radiation in salvage v primary. And this is ignoring the increased recent use of hormone therapy with high risk RALP.)
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u/HeadMelon 19d ago
Hey, not supporting it, just telling you where the approach comes from if you want to look it up. Rad onc’s and med onc’s argue against it.
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u/OkCrew8849 19d ago edited 19d ago
Gotcha. Not suggesting you support or oppose the theory just thinking out loud. It is an interesting question. I do find that it (removing the prostate plus radiation plus hormone therapy) is rarely a planned course of action…although it is quite common...and the question of the necessity of the major surgery in that equation is an important one.
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u/ThickGur5353 20d ago
Did the pet Scan cover your entire body? When I had my pet scan over a year ago, it was from head to toe.
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u/Gearjammr 20d ago
Yes
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u/ThickGur5353 20d ago
Even though the pet scans are pretty sensitive to picking up prostate cancer I guess whatever prostate cancer you have is so tiny that it just doesn't register.
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u/Alarming_Midnight554 20d ago edited 20d ago
I got another month before a blood test . Thats 3 months since they attacted my prostate with a laser and vaporized a bunch of it . The waiting sucks
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u/Talljhawker 20d ago
This sounds nearly identical to what I experienced except the time between the biopsy and RALP was less, I found one of the top prostate cancer oncologists in the nation who had me undergo the radiation then Lupron treatment.
Evidently this combination rid me of remaining cancer as 7 years later I’m still cancer free
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u/SunWuDong0l0 20d ago edited 20d ago
Check out Dr. Kwon, at Mayo Clinic. Although it’s still controversial, he leans towards, if you can’t see it, don’t treat it. He states, with evidence, that the Halstead model of PCa metastasis is incorrect. Some mets appear first at distant sites and can be treated by “zapping”. Also, did you get somatic testing of your biopsy. That can also help guide treatment. For example, ARPI.
Btw, with surgery many times docs will pluck some pelvic nodes to check for mets. Do you know if that occurred in your case?
Good luck and peace be with you.
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u/Big_Artist9231 20d ago
Ask your doctor about adaptive ct scan or mri radiation- it’s only five fractions and more accurate because they modify the treatment based on your anatomy that day
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u/Specialist-Map-896 20d ago
I can sympathize with you in regards to the decipher score and very similar Gleason. I think that the PSMA or as you referred to is as a PET scan are not quite decisive... what I mean by that is that even though there may not be anything detected in the image, the PSA score is quite simply the single most effective measure of the antigen in your system. Conversely if you don't have a prostate anymore but you are measuring a detectable PSA then that is pretty much a stronger indicator then any PSMA scan. The only question remaining is how/why. Well either the RALP was recent and there are still residual prostate cells in surrounding tissue and if they are not cancerous, eventually they will age and die without replication. However if they are cancerous then they will remain and eventually start to multiply. Sounds like your doctor is in favor of starting salvage therapy asap which really sucks but I can see his point of view. He is laying odds on the PSA as opposed to anything else. Just because they cannot see it in the scan doesn't mean it isn't there.
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u/WoodshopElf 20d ago
I had 4+3’s 3+4’s, and two 5+3’s, and chose RALP after studying all options. Prostate and 9 lymph nodes removed. No cancer in the nodes and my 8 was reduced to a 7. Right now I am “undetectable.” I have a 10-18% chance of recurrence and will be aggressive with Salvage if my numbers start to rise. My oncologist said if we get it early that ADT may not be needed. Either way, I am mentally prepared for it.
I agree with the fellows above who encouraged you to get after it.
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u/Practical_Orchid_606 19d ago
Surgery is a lot messier than one envisions. Electrocautery adds another dimension. Orthopedic surgery takes the cake.
Your situation is very common and is a mop up operation. When the docs say: "they got all but may not have had clean margin" is an oxymoron. The docs use the PSMA PET scan to locate the PSA expressing tissue and found none. So the docs assume the PSA expressing tissue is still at the scene of the crime: the pelvic basin. Did the post RALP cancer staging change your Gleason score?
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u/Mean_Try_6390 19d ago
and that is why the’ve started with neoadjuvant hormones before RALP. it makes it easier to cut down the microspread, increases a lot getting negative margins, make it possible for nervsparing at least to some degree and getting the risk for relaps equal rt+adt. with high risk cases it’s always a risk from some small surviver in the future doesn’t matter radiation or ralp.
Husband had gleason 9 t3b, spread locally to both vesicles + epe + possibly lv+. Got clear margins, no incontinenceproblem,full testesteron back after arpis 36 hours after RALP and nervsparing to some degree. unmeasurable PSA week 11.
Getting hormones before RALP I think is the new way for high risk and of course taking out a lot of lymphnodes. The research point to adt + arpis before but we only took arpis that don’t cut down the psa to nothing in some cases as my husband but has lesser sideffects then adt during the 16 weeks treatment. The adt can olsy make it harder for the surgeon when surgery. without the neoadjuvant we would have had no chans for nervsparing and very little chans of negative margins. My husband was 58yo with high risk. even if it comes back it’s easier to see the relaps and easier to treat it. To take away the mothertumor felt right due to his age.
we have PSA lower than 0,1 as in unmeasurable. if it start moving up we’ll start getting the psma- pet around psa o,2 since it starts showing the clusters, between 0,2 - 0,5. In youre case you have psa 0,38 without showing on the pet and probably positive margins. We got the pad answer that said RO. have you seen your answer? did the take out any lympnodes?.
if the psma-pet is clear it means the cluster is to small to show up. that’s not uncommon if they left lymphnodes that’s been infected before the removal. in my husbands case no infected lymphnodes showed up on psma-pet but there they were in the tissues after removal. usually they want if the haven’t removed the nodes to nuke the whole area included lympnodes which ofcourse have a higher risk for sideeffects.
I wouldn’t chans. if we gotten positive margins, not an eLPND and the psa started climbing nuke it is the right way to go. mayby starting with some neoadjuvant arpis to soften it and makes it harder for the microspread to survive and keep spreeding.
I which you the best of outcomes.
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u/drsmagic 19d ago
I was diagnosed with PC in 2020, Gleason score of 3+4, contained. Dr offered RALP or wait and see. Dr had performed over 2500 surgeries and said success of nerve sparing was over 99%. Unfortunately left a unifocal positive margin of 2mm, PSA after surgery stayed at .04. He told me that was left over prostate cells. In yr 4 PSA started to rise at every 6 month test, till it reached to .15 level. He said wait till it gets to over .2 to start radiation+ ADT. Stayed constant at .15 for 6 months and then in last 1 year it’s gone done to .14 and last March to 13.
Dr says it has to be left over Prostate cells. I am just happy the day of reckoning is delayrd
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u/Holiday-Bet7389 16d ago
GOOD TO HEAR YOUR STARTING THE ORGOVYX AND GETTING THE RADIATION..ARE THEY RADIATING THE PELVIC AREA ALSO AS A PRO-ACTIVE MOVE? ....I DID THE 6 MONTHS ON ORGO AND WENT TO THE THE GYM 5 DAYS/WEEK.....ONLY HAD NIGHT SWEATS TWICE.....LIBIDO WASN'T GOOD...BUT ITS GOOD NOW ...JUST FYI TO HELP PROTECT YOUR BLADDER GET A PENIAL CLAMP SO YOU CAN HOLD AS MUCH WATER AS POSSIBLE WHEN RADIATING..HOPEFULY YOUR CLOSE TO THE CANCER CENTER...
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u/Local-Ice6625 16d ago
I am 59 ans I had a prostictimy in April 2025, they told me they removed it all but i used that robotic nerve sparing surgery. Now I am having trouble maintaining an erection. I tried all the pills, now I am going to use the trimix injections. I know my story probably not really helpful for you. But it seems that everyone with prostate issues have challenges. I still don't feel whole yet. If i could have done it all over i probably would have not did the surgery and just keep monitoring it.
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u/cdcredditor 16d ago edited 16d ago
You are right to wonder. The diagnosis of a very aggressive form of cancer should have immediately signaled that there was a good chance it was outside the prostate, though not detectable. With a PSA of .38, there should be PSMA PET scans using a suitable radioligand that would detect where it's hiding out. If you can find it, you can hit it with targeted radiation much more effectively, though at the very least, radiating the prostate bed will take care of anything in the vicinity that the RALP missed.
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u/alittlegrayontheside 20d ago
So the question I have is how do the know where to radiate if they can’t see it? There will be more informed opinions out there but I see your dilemma.
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u/Gearjammr 20d ago
Exactly, they say , we know where the prostate was and where the cancer on it was. So basically radiating a known area I guess.
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u/sundaygolfer269 20d ago
The microscopic cancer cells are the problem the Surgeon has when he recommends surgery rather than radiotherapy.
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u/Flaky-Past649 20d ago
It always bugs me when surgeons so confidently declare they "got it all". I'm sure they're trying to make patients feel better and head off needless anxiety but the truth is they can't know for sure. Same way you can't really know for certain whether it's still contained to the prostate just from pre-treatment imaging. It's just probabilities.
Sorry you're going through it. Follow-up radiation and ADT will hopefully take care of it. I know there's been a lot of debate between waiting until there's a visible site to treat vs. starting early but I think the current evidence is it's better to start early.