New diagnosis
Hey all—58 yo and had first PSA done recently. 9.6. Tumour found and had RARP 3 wks ago. Pathology showed T3aN0 with focal EPE (Gleason 8) and I’m BRCA2 pos.
Any one in a similar situation? Did you get adj rads? Or sit tight waiting for PSA to go up?
Would love to hear experience of others
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My husband is still working , one regular job and 2 side gigs . He is 69. He is only about 6 weeks post op and nobody to pick up slack unfortunately : (((. Actually he had to travel this morning to Michigan unexpectedly since his partner decided to take a road trip for wedding on the east coast even though he knows my husband's situation. Not to mention that business will just case to exist if my husband gets worse and that guy will have all of the stock gone. I have hard time understanding human kind lately, but I digress.
Luckily my husband prefers to stay busy, that way his mind is occupied with creative thoughts and he does not think about PC much. I took that part on myself though and it is tough. I wish I have better answer for you - if you like your job try to immerse yourself in it, if it makes you stressed perhaps you can transfer to some less demanding department *sigh.
I truly know what you feel and I am sending you healing vibes and best wisher for the best possible outcome 🍀🍀🍀. This condition is unpredictable regardless of BRCA, results are all over the place in general, just try to keep hope up knowing that it can end up really well for you, no matter what are the initial findings. You are young and strong and new treatments are coming out every day, especially for PC. My personal belief is that the first true cure for cancer will be for PC since it is slow growing and so much is already known about it. Scientists can follow patients for many years and see what is working and what not. I think that BRCA actually is heaving very good response for one of the treatments if it ever progresses - Jeff knows much more about that, but you are at the beginning of this journey and in couple of years there will be probably some "Trebiqua 604" that will decimate all PC cancer for everybody 💗👍🤞😎
All the best 🍀🍀🍀 !!!
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2 ReactionsMy pathology report after RP was g9 and high decipher. Margins were clear. Both my surgeon and physician agreed PSA monitoring was best way to begin. Almost two years of PSA at < 0.01. He said the first two years were highest for recurrence. Next test in two weeks. Hoping and praying for more of the same. Best of luck with your decision. 🙏🤞
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1 ReactionSorry to hear of your diagnosis and Gleason Score. It will naturally be up to your urologist, but I am guessing (s)he will want to see what your first PSA level is at 3-months post-op. You might be pleasantly surprised with the desired < 0.1 ng/ml. That will be a good indicator that (s)he got most/all of the prostate. Your absence of mentioning the following (besides your EPE), implies your pathology report did not indicate the presence of any of these features, which is a great thing: No seminal vesicle invasion; no cribriform glands; no bladder neck invasion; and no surgical margins. No matter what, I assume you know that for the first year post-op, you get PSA levels drawn every three months, because if you see a 100% increase to 0.2 ng/ml or greater, the urologist will want to hop right on radiation therapy (40 days straight of daily radiation treatment). Good luck - we'll all look for your reply if there is any more detail in your pathology report.
Thanks for the feedback. I did have a borderline pos surgical margin too (< 3mm with Gleason pattern 3 at the margin that my surgeon thinks is likely a false positive).
But now it’s just a waiting game as you said. Praying all will come back neg as you said.
Thx again for the support
I had about the same, Gleason 9, extra-prostatic extension, and a detectable PSA after surgery. My PSA has been slowly climbing since surgery 17 months ago.
I am not panic stricken. I am 62 years old. I am in good health. I realize that my PSA is climbing, but there are treatments, and I still believe I can be cured. I had no seminal vesicle invasion, no lymph node involvement, and no metastasis. It appears to be localized. I was diagnosed T3a.
My plan is to tread carefully, not panicking, and strike when I know what I am swinging at. With very low PSA (mine is .06) it is doubtful anything will show on a PSMA PET. There is always a possibility that the cancer is some place other than my prostate bed, so I am hesitant to irradiate that for no reason as there are consequences to treatment.
My advice is to catch your breath. Think before treatments. Consider what your team suggests. Ask questions, and do your research. Good luck
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2 ReactionsYou really should try to get a decipher score so you have an idea of what your recurrence chance is. Your low PSA is really good, This is considered undetectable as long as it is < .1
With EPE it can be pretty aggressive no matter what treatment you pick. That can mean that your cancer has gotten into your bloodstream. Happens to a lot of people and the cancer can go dormant for a long period of time. I know a guy with the Gleason nine that had surgery and it didn’t come back until 30 years later when his PSA started rising.
I also got prostate cancer at 62 and had surgery. It came back 3 1/2 years later an .2, and I had ADT followed Two months later withsalvage radiation. They gave me 2 1/2 more years before it came back again. I do have BRCA2 a genetic problem that is the reason I’ve had four reoccurrences. I’m still alive 15 years later, however because I have stayed with the treatments that works the best.
With your low PSA, it is definitely not time to do something aggressive. Here are some information that may give you an idea about what the doctors feel should be done if your PSA starts Rising after a Prostatectom, Which yours really hasn’t.
From Ascopubs about what PSA to do salvage radiation.
≤0.2 ng/mL: Starting at this level maximizes disease control and long-term survival. Patients treated at PSA < 0.2 ng/mL achieve higher rates of undetectable post-SRT PSA (56-70%) and improved 5-year progression-free survival (62.7-75%). Delaying SRT beyond PSA ≥0.25 ng/mL increases mortality risk by ~50%.
0.2–0.5 ng/mL: Still effective, particularly for patients with low-risk features (e.g., Gleason ≤7, slow PSA doubling time). The Journal of Clinical Oncology recommends SRT before PSA exceeds 0.25 ng/mL to preserve curative potential.
0.5–1.0 ng/mL: Salvage radiation remains beneficial but may require combining with androgen deprivation therapy (ADT) for higher-risk cases.
You got prostate cancer Quite young like I did. There is a chance you have an hereditary, genetic problem that caused it to happen so young.
Get a genetic test to find out if it could be a factor. Does anybody else in your family have cancer? You can get it here for free, takes 2 to 3 weeks to get the results and a genetic counselor will call you. You must live in the USA to get this test.
Prostatecancerpromise.org
Don’t check the box that you want to have your doctor involved or it will greatly delay the test.
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Sorry to hear, I'll tell you my 55yo husband's "story"
Went to the Dr in Feb 2025 with what we thought was enlarged prostate, frequent peeing at night and some ED, but lot of stress in our lives in the last year and I'm 47 so bed stuff is irregular.... anyways the doctor did confirm enlarged, got a PSA just in case.... came back almost 300! That referred to urologist and a pelvic CT scan, the scan showed outside prostate so stage 4! did a biopsy and most of the combined Gleason were 8 and 9s a few 7s.... referral to oncologist, plus urologist said my husband would probably have to go on ADT, my husband would rather DIE than get his manhood taken away!! It was a battle.... but he DID it....I forgot if he got Firmagon shot first or the full body PSMA PET scan, anyways, the scan looked like he lit up like a Christmas tree! Lymph nodes both in pelvis and near the neck/lungs, pelvis, bones, spine, innumerable foci in lungs! We were devastated to say the least!
At some point he got the Firmagon shot, but also out of desperation he started all sorts of supplements, like Fenbentosol, Ivermectin, Turmeric and more... It wrecked his liver within 2 months I think, the numbers kept going up to the point of them calling saying he was in liver failure! He quit everything (of course only told them half of the stuff he was taking!) but he did QUIT and after a month or so the liver was to the point where he could start taking daily Zytiga and Prednisone, he also refused chemo but finally relented and just finished his last round last week.
He's very tired and weak and feel like a shell of a man, though I tell him that if I had breast cancer and got them removed, would he think I'm not a woman anymore? No....
He DOES however go to the gym every day and does weight training and cardio (alternating I think) and last week they told us he's doing "extremely well" due to the exercise and good dies (we've almost always had a healthy diet) so it makes us doubt it's even working, since he's doing SO WELL! but the pharmacist lady said it IS or he'd be dead by now! Ok Lady!!
Next month is another PSMA PET scan so prayers that a lot has shrunk.
Still statistics show 30% make it 5 years though, but they're guessing he'll do better because he's otherwise healthy and rather young for this diagnosis!
He's alive and I'd rather have a husband and no sex life than a dead husband and still no sex life! and I don't care that he's more tired now (more from the chemo) we have night sweats and hot flashes together and cry over stuff! C'est La Vie... right?
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7 ReactionsThanks for additional details, I hope my husband's PSA will come back undetectable too 🙏.
We do not have a "team" and have to do all of our research by ourselves and have no direction by doctors. We have to ask for anything and via text , sometimes we get answer, sometimes we don't. We had to insist on early PSA test and it was a major hustle to make zoom app. with RO, still waiting to have zoom with MO for advice (first app late October). No matter what we are considered "not urgent" 😣 from the beginning (from AS time) and ended up with "surprise" gleason 9, cribriform, IDC , unifocal EPE 🥺, not to mention that one of the margins is equivocal. But, hopefully it will all end up well. I found study where RP patients in the 1999 (no PSMA, no anything at that period) , had median time to death 13 years in UNTREATED population !!!! With today's numerous medications and protocols, one has to hope for the best , I guess, regardless of what therapy and when it is conducted.
I read couple new papers about ADT for adjuvant and salvage - it seems that new thought is that more is not necessarily better, at least not MUCH better, almost the same life expectancy (RADICALIS-HD). It is just that rise of PSA is delayed , but expectancy was almost the same.
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3 ReactionsBea, YOU must be exhausted…we men will yell and stamp our feet before we finally do what you asked in the first place - including taking care of ourselves.
You are a fantastic woman and an even better wife!
Phil
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2 Reactions@heavyphil
Aww thanks! It's almost a year since my in-laws passed away, they were in their 90s and my husband took care of them more at the end, where I was the driver or errand girl for years.
The day after my father in-law died (11 days after his wife) my best friend ended up in the hospital and was there was 100 days! Out of state so I couldn't be there but I texted about it every day, then my husband's diagnosis in February and two weeks after that my mom died! She was in bad health and it just put her over the edge, she's in Denmark but I didn't get to say goodbye to her in person but somewhat on the phone... calling the hospital every day I was told it was the end and had the nurse put the phone to my mom's ear and I cried and said goodbye, I love you (something you rarely say in Denmark) and I told her it's ok to die! I hung up the phone and not 15 min later did the hospital call that she had passed away!!
So all that within almost 6 months, I told my husband he better fight it because I'm not starting a collection of urns!!
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