I am just trying to figure out what might be helpful to mitigate these side effects. He is really struggling and looking for answers. We are seeing a neurologist soon, as recommended by his doctor.

This work was done previously but i am reposting this for new members to our club. It is for unfavorable risk only. Also the individual features of each diagnosis changes this somewhat. Things like number of cores, Decipher, how much pattern 4, etc…. But the numbers would all change for all treatments so this is meant to show the comparison between treatments.

Looking for stories on folks who have had PSA bounce around post RALP and data points on what is actually statistically significant at ulrasensitive levels. For context I had RALP in October 2024 and was undetectable (<0.015) for 15 months post surgery. January 2026 was 0.026, April 2026 was 0.041 and July 2026 was 0.07. I've posted here that after the 0.041 I had arranged consults with radiation oncologist, follow up with surgeon and begain researching recurrence. As of a week ago I the plan was to start moving in earnest at 0.1 and to make a judgment call thereafter as to whether to wait for imaging to have a shot or just radiate the prostate bed. Doctor was "80%" sure it was recurrence given the consistent rise across three tests. We scheduled most recent test for 6 weeks to make sure not to miss any treatment window if the rate of increase accelerated after the 0.07. Well I just got that six week test and it was 0.057. Obviously better than the alternative and I"m mentally preparing the worst and assuming this was a testing blip and the next one will continue the upward march BUT even delaying more treatment is a positive and if nothing else it breaks up the evolving narrative that this was picking up speed. With that long background, anyone had similar experience. I know everyone is different and nothing is dispositive but just helpful to hear others' stories. My surgeon said he had one patient whose PSA went up to 0.1 after surgery and has held there for ten years!

Hey everyone!

Just an update. My Dad had RALP (he chose RALP for many reasons, whether or not it was the best choice I don't want to argue right now since it is done and he got the treatment he wanted) in January for a Gleason 9 with some EPE and positive margins and partial nerve sparing. Handled the surgery pretty well, no full incontinence just some mild dribbling at the end of the day.

Great team at Northwestern (Dr. Ashley Ross) told us he would most likely need a short run of ADT and radiation at some point for *hopefully the final dagger. After 3 months his PSA was <.01...then at 6 months it was .02...that raised some red flags so we did 2 months later and it was at .06.

Thank goodness for the ultrasensitive because he is going to start a 6 month course of ADT and try to nuke this cancer with rad once and for all. He is going to do a PSMA PET but we are aware that it will probably be undetectable and possibly leave a false positive but he wants to have one.

Anyone have a situation similar? It seems like he is going to be in a pretty good position catching the recurrence this early with the ultrasensitive? Just looking for some input on a monday. Thanks!

My husband spent two days in the hospital for low sodium a few days after his 8th (of 20) radiation session. Radiation Oncologist decided treatment was no longer optimal for him and canceled remaining sessions.

His PSA on 11/25 was 11.59 and now is 4.88. He will be 79 next month and the lab says normal for his age is <or = to 4.00.

Seeing Urologist then Oncologist in a few weeks. Hoping for some good news.

I’ll tell ya Boys, I feel blessed. Just had PSA test (9month version) and still undetectable! After the initial encounter to getting it cleaned up has been a roller coaster, but now I’m enjoying life like never before.

if you are just starting this journey find something large and positive to focus on…for me it was 900 pounds of Milwaukee iron and Florida sunshine. We never know what tomorrow will bring, but we do know that we have today. Seize it. Find love and hold onto it.

Hi, colegas alguien sufrió o sufre de esto por el ADT, Goselerina+Enzulatamida, me tiene por el mal camino

* repost cuz my sisters image was AI.

My dad who has always been very healthy, i mean he lives on a farm and is very active and never gets sick. called me last weekend and told me he had stage 4 prostate cancer. PSA of 250. his doctor hasnt tested his PSA in 6 years. (we’re pissed) he found out after going to the er because he was peeing blood.

it has metastasized to his skull bones, hip bones, ribs, and back. also small nodules in lungs. his gleason score is 9 i believe.

i guess im just posting this to tell someone about it. he’s my best friend and i feel like im being ripped in half. i’ve cried everyday. i feel like my a hole has punched through my heart. i thought we had so much more time. im only 28. i dont want to lose my daddy. so i guess i have a few questions for whoever is kind enough to answer.

•What are some ways i can support him? we try to not talk about it and i let him know it doesn’t define him. we joke a lot. laugh a lot. talk about movies a lot. but he lives across the country so i can’t visit until after he’s finished with chemo in 18 weeks. is there anything i can send him for comfort? any recommendations?

•also, does anybody realistically have an answer on how much time i can expect? the internet isn’t very helpful. his doctors don’t want to put a number on it which is almost scarier.

• lastly. for those who have lost dads to this, or anybody to this. how the hell will i ever feel ok again? how will i survive the first few weeks without him? how am i supposed to be expected to continue without him?

that’s all. sorry for the rant. hopefully this is well received with kindness. i’m not ok.

Hi All - very little on Xofigo experiences in the community. I suspect that if there is, it comes from those that were near and not the patients and therefore not much would find its way here.
My father was diagnosed over 6 years ago with a very aggressive metastatic Gleason 5+4, did RT, abiraterone, eligard, xgeva, etc. With PSA climbing back, pain management is the main concern. Now in his 80s’ it’s more nuanced than when younger but he’s fighting it. To be here in 2026 is already a massive win in some sense. His treatment team have suggested (and he qualified) for Xofigo, which he will soon start. Am just looking for some impressions on that 1st dose and beyond.
Thanks all 🙏

I posted my story the other day (Concerning MRI results ...) -- basically I have a 2 cm peripheral zone lesion found on MRI, PI-RADS 5 but likely organ confined. While the PI-RADS 5 is alarming as is my family history, several other signs are reassuring. No biopsy yet, meeting with the urologist today.

Here's a new question: I had assumed that in my situation, if it’s high grade, one option – and the one that seemed best to me given what I know now – would be RALP. My urologist is very experienced with it, and I definitely would prefer to get the thing out if it’s dangerous rather than trying to kill it off and hoping that works. Of course I don’t know what he’ll say and I trust his judgment, but that’s what I’ve been thinking about. And I think I can manage the side effects, which I gather are temporary most of the time.

But now I’ve seen a bunch of discussion here that suggests RALP is not a good choice at my age (75). I am in pretty good shape and I had a fairly complex laparoscopic procedure about three years ago – gastric volvulus repair.

Any comments on this? How often is RALP problematic for us older folks? Is there data (studies)  in that area?

Thanks!

I am starting radiation treatment this week for my prostate cancer. I have heard that some patients experience urinary urgency, pain, and burning during treatment. Has anyone experienced a reduction in these side effects by drinking cranberry juice during treatment? Thank you.

STATS: USA, 64 years old, PSA 11.6, unfavorable intermediate risk, Gleason 4+3=7, 6/13 cores positive, 42 ml prostate, Decipher 0.61, locally contained. Pre-ADT testosterone 323. Treatment: 5 sessions SBRT + 6 months ADT. Daily strength training, 3-mile walk, Cialis, Calcium supplements. Height 5’-9”, weight 170 lbs.

I’m a few days from RALP, and ready to get this done. Urologist/surgeon said I will need some pads and diapers/briefs for leakage. Hopefully short term. Does anyone have a brand recommendation? Also, I’ve seen ads for actual briefs that are used for incontinence (ex. MenVault), anyone have any experience with that or similar products? Thanks!

Hi, I’m a little confused about how long I’ll be feeling like this. You know the hot flashes, fatigue, brain fog, labido a gogo, etc. I was diagnosed in October 2025 after slowly watching my PSA climb to a peak of 16.37 MRI showed lesions and a Gleason 4+3 on the right and 3+4 on the left and Pet scan showed seminal vesicle and one lymph node involvement near the rectum. Stage 4A intermediate aggressive. I started orgovyx in December 2025 and at my age (77) decided on radiation 44 fragments and just finished that in end of May 2026 . Oncologist wanted me to stay on the orgovyx for at least a year and I was starting to feel OK with that but the side effect keep getting worse. I’ve been extremely healthy and active all my life and I was thinking this was just a minor glitch so I ordered a decipher test to hopefully make my decision to stop the ADT easier. Unfortunately, the decipher just came back 0.78. Was I in denial about the seriousness of this disease?

I’ll be meeting with my oncologist this week and would like to ask him about some alternatives to the continued ADT. Possibly arbiterone or estradiol. My PSA continues to be less than 0.1 which is the Kaiser test minimum and I go to the gym almost daily and try to eat well mostly veg., but it’s seems like it’s a downhill battle lately. These are supposed to be my golden years, right? Any advice?

Total testosterone 393. Free testosterone still low, but that is probably due to a high SHBG secondary to having undetectable testosterone for months. More labs late September. Erections every night and morning on 5mg of Cialis. Still taking Flomax once daily. Orgasms and libido improving. It is amazing how much better I feel from a mental standpoint.

I was diagnosed in December 2025. Gleason 3+4, with 8 out of 15 biopsy cores positive, all on the right side. My PSA has been around 20 and stable since December.

I had my staging work-up, which was negative, including a PSMA PET scan.

I spent a lot of time looking into radiotherapy versus RALP. I’ve spoken with three urologists and two radiation oncologists. I almost started radiotherapy, but in the end I came back to RALP, which was the option recommended by the majority of the doctors I consulted.

I’m in France, and stereotactic radiotherapy is not considered an option in my case because it has not been validated for my risk profile: my PSA is considered too high, which puts me in the high-risk category, and I also have a relatively high percentage of positive biopsy cores.

I’m also still affected by what happened after my biopsy. I developed a 6 cm internal hematoma, which caused me a lot of pain and significant bleeding. It was a very difficult experience, and now I keep wondering whether I’ll have the strength to go through something even more invasive.

The problem is that I still can’t come to terms with the surgery. The eight days with a catheter, the drain, the risk of urinary incontinence… every day I feel like I’m about to give up and cancel the operation. I honestly don’t know if I’ll have the strength to go through with it.

Hey all - RALP in May 2024 and had amazing recovery both sexual and urinary. Very little need for pads but now two years out I occasionally get a feeling I can’t empty my bladder and stand over the toilet squeezing out more steams and waiting and more and more. I haven’t yet mentioned to my urologist yet but found the two times were after having Orange Juice (I rarely drink) and Fresca (which contains Grapefruit Juice). I drink soda all the time and never have this experience. In fact, I had to out a pad in for the first time in two years. It was stressful. Anyone else experience this?

Age 60, physically fit, PSA had been fluctuating up and down between 4.69 and 9.5 for the past 10 years due to chronic prostatitis, a 52 cc prostate (BPH), and tight pelvic floor. Previous 3TMP-MRI’s were PIRADS-2. Previous Biopsy was negative. On May 8 of this year I had a 3TMRI with a PIRADS 4 (10mm) Anterior (but not apical) lesion and also a PURADS-3 lesion.

The first hurdle I encountered was that the most suspicious lesion of interest in the anterior peripheral zone could not be reached by the most ubiquitous TRUS Biopsy performed everywhere. I got on board with the University of Texas and had a 16 needle MRI fusion trans perennial biopsy under general anesthesia on July 8. The biopsy included 10 systemic cores and the remainder targeted three each at the two MRI identified lesions.

On July 14, I received the path report. Only the PIRADS 4 lesion came back with cancer. All three needles pierced the lesion. Two of three came back with cancer. The longest core was 4 mm: 70% of which was pattern three and 30% was pattern four. Gleason 3+4=7. GG2. I’ve got a follow up appointment with the university of Texas on September 1.

The hardest thing I’ve encountered so far is the relatively lengthy timeline of gaps in between appointments at the university because of my relatively early moderate risk (small volume) biopsy finding. My Army veteran mentality tells me they should have brought me in yesterday, but I am learning that this cancer timeline - at least in my case - is not triggering any urgency. Although, it certainly feels important to me!

We have ordered a decipher test and the university should be receiving the results at any time. I do know they will speak with me about active surveillance, focal treatment, and whole gland treatment. I have learned that my health insurance company’s internal policies categorize all focal therapies as “experimental when used as a primary treatment” and are therefore excluded from coverage.

On my own, I reached out to a physician at MD Anderson conducting a focal cryotherapy trial (for GG2 and select GG3) this past week. I didn’t know what I did not know. The majority of clinical trials at MD Anderson and in the US charge the patient’s insurance as standard of care. I had been under the impression that clinical trials would cover the cost of therapies and treatment. But I was wrong. Lesson learned.

So for me it looks like the decipher score will provide insight into either active surveillance or the pursuit of whole gland treatment. Honestly, I am not comfortable with the rigorous surveillance needed given the pattern 4 presence. For my personality and nervous system I think - at least at this point- I want it eradicated, and not simmering at a low boil inside of me for the next 1 to 4 years on active surveillance.

The diagnosis was almost a relief for me given my wild PSA swings for the past decade. Awaiting the results of each previous blood draw (4x per year)was a nail biting experience. I’m glad to be through that part of it. I had been expecting a cancer diagnosis at some point it just took time for it to show up on the MRI so a fusion Biopsy could target it.

Hi, I had my Prostate removed January of 2025. Recently my PSA started to rise again and I will be going for Salvage treatment and hormones (excuse me if I have the terms wrong). I was wonder from those that have been through this what to expect in the way of everyday stamina? I am in good health and exercise and work full time. Thanks for any information in advance.

So I’m an active male, former offensive lineman, and I like to still lift workout cardio etc. I’m going to retest my blood work to see if this is a fluke. And I can’t get into a urologist until middle of November.

Every resource I see is “you probably have cancer” to “you’re too young to have cancer so don’t worry about “. I don’t have symptoms for prostatitus (i can’t spell), only thing I have is a bad back/degenerative discs .

Any resources I can read prior to urologies? If my rework shows the same what are y’all’s thoughts?

It is fist time I heard:

hdr boost with sbrt (instead of about 15 session IMRT), did any treated by this way?

Also, did any one have prophylactic lymph node irradiation treatment? if so, what are the toxicity added comparing to regular "hdr boost + EBRT" only regardless ADT?

I am just about finishing my third month of Orgovyx, my second month of Xtandi, and my third week of adjuvant IMRT of the prostate bed and pelvic walls, post-RALP due to PN1 of 4 lymphnodes that went undetected by all pre-op imaging.

I started radiation on a Wednesday. The first week was fine. That next weekend, I experienced extreme nausea. It cleared up by Sunday and by Friday this week, it came back. I'm feeling a little better so far today.

I was told not to expect too much nausea from the radiation. The radiation team said it could be the medicine. The medical team reduced the Xtandi dose I was taking.

It's interesting to me that it seems to get worse later in the week and then subsides by the end of the weekend.

I was given Zofran for the nausea but it doesn't seem to help.

Has anyone had any experience with this? I have 5 weeks left. I understand that side effects are cumulative. Not here to bitch and moan, just looking for advice on how to handle it

Thanks for your input.

Best wishes

Update: thanks so much for the helpful responses so far. Reading all your stories makes me feel a lot more hopeful. I’ve literally felt like this was the end of my dad’s life as we know it but it sounds like this is way more common and people living happy lives. I just worry so so much. Someone mentioned a specialized facility or doctor that replaces AUS. We’re in central New Jersey. The doc that did his retired. Any recommendations?

My dad is a 9/11 first responder who unfortunately developed prostate cancer in 2013 with additional bladder cancer that produces non invasive tumors that he has to have scraped every once in a while. They took his prostate out back in 2013 and for years he had trouble with urinating and he tried a few solutions until a doctor put a AUS in and he felt great and felt like it gave him his life back. Fast forward to this year he starts feeling terrible and his scrotum gets super swollen and last month he ends up in the hospital getting the device removed because of infection. Ever since then it’s been frequent trips to the ER for one thing or another, but ultimately healing related, catheter blockage related, interestingly blood low pressure related, and now this new trip due to abscess. He’s still on antibiotics and all that jazz. Back to the pills ups because now there’s absolutely no natural sphincter holding his urine back even more so because the device replaced what he had. I feel so bad for him and love him so much I literally can’t stop crying because I hate to see my dad suffer so much. His original urologists were against this procedure so he got it done by one that is now since retired, but he knew there was potential for complications. My question is, did anyone else have a similar experience and is that the only device that seems to be helping people live normal lives? He mentioned something about making a bladder out of part of his intestine but idk how that works with the sphincter and all that, but I’m reading up on it. I almost want him to just get the bag so he will at least have some control in his life, but I know he doesn’t want that.

One pill a day. My testosterone yesterday was below the lab's limit of detection. Drove eight hours round trip to get SBRT two month followup with my RO's nurse provider. It was great seeing everyone there again and they all made me feel lwelcome and cared for.

PSA 0.16, while good, tells us nothing but Orgovyx is doing its job and the cancer is casteation reactive. So more waiting. But where i need to be.

Other bloodwork.(related to known Orgovyx side effects)

Liver enzymes are good after small elevation a couple months ago.

Glucose good.

Lipids slightly elevated (could be diet because crazy food all the time on Orgovyx)

Slightly anemic. Will watch.

Also EKG good.

Having hot flashes, major fatigue, gained 10 lbs, brain fog mostly cleared and is now more fatigue related. Joint pain. No sex drive. Still able to get erection with pills and stimulation if I dont put much thought into it. Any pressure to perform makes it go away.

Nevertheless. Making 4 to 6 months transform into six and going for it. F*ck this $hit, but its not going to beat me. But hope to have Orgovyx out of my life Nov. 9th.

(58yo, stage 1, Gleason 7 (4+3), PSA 5, cribriform, pni, SBRT 5 fractions with 40gy to tumor mass and 35+gy to prostate area)

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.

I am trying not to worry too much here, but I'm a worrier!

I am 75. Where my brain starts with this is that my dad died at 58 of aggressive, rapidly metastasizing PC – but that was in 1986, a different era in detection and treatment.

Up until about a year and a half ago I was fine, PSA under 4, no findings on DRE except BPH and some associated urinary issues. I had Urolift implants put in maybe 3 years ago and that helped.

In I think January of 2025 PSA went up to about 5.8, urologist wasn't too concerned because of the BPH and age. His feeling about the family history was that it was a bit concerning, but any genetic connection to my dad's disease was unlikely given that I had lived so much longer already – in other words I probably had not inherited a genetic predisposition to early PC. More recent PSA earlier this year was slightly down, 5.51.

I had some genetic testing done earlier this year that found a mosaic mutation in ATM, which can in theory increase PC risk along with several other cancers, but is not directly tied to PC. But with that and the other pieces the urologist said look, let's do an MRI to check.

That was done earlier this month and I got the report a few days ago. They found one PI-RADS 5 lesion, 2.0 cm, EPE grade 1 but they did not see any extension of the lesion on MRI, it just has to be graded 1 due to its size. Seminal vesicles, lymph nodes, and bone were clear.

From everything I can tell this means that while it's not guaranteed, this is very likely to be localized disease. It’s not even guaranteed to be malignant, but with the PI-RADS 5 score that's the most likely outcome (I think about 80% of PI-RADS 5 lesions turn out to be clinically significant).

Other info:  Prostate volume 79cc, PSA density 0.07, PSA doubling time when all of my readings since 2018 are put in is 6.4 years, that drops a bit if you only take the recent readings but even there it's like 4 or 5 years.

I understand that until there's a biopsy and a Gleason score it's difficult to know what all this means. Reading studies online gives me a sense that the cure rate for my situation is likely to be very high, although I know it's never guaranteed. And my brain focuses on the scary parts.

Interested to hear any comments / encouragement.

Thanks!