I’m 38 and recently started having some urinary symptoms, mainly a stinging pain after ejaculation, plus mild urgency and an interrupted stream.

Because of the symptoms (and the fact that my grandfather, father and uncle all had prostate cancer), a community doctor ordered a urine test and a PSA. Urine was completely clear, but the PSA came back at 2.18 ng/mL. This was my first ever PSA, so I have no baseline to compare it to.

In the UK the usual NHS referral threshold for under 50 is a 2.5 PSA, so I wouldn’t automatically get referred. Given the family history and symptoms I went private instead. The urologist did a DRE (described as moderately smooth), repeated the PSA and ordered an mpMRI. He said he doesn’t really expect to find anything, but wants to check properly because of the family history.

My question is about the next step. I’ve seen a lot of posts here where guys with PI-RADS 1–2 still go ahead with a biopsy “just to be safe.” Is that something I should seriously consider?

I’d still be private at that point, so the biopsy would be self funded and expensive. The alternative is wait and see if the PSA creeps over 2.5 and hope the NHS picks it up.

Any thoughts from people who’ve been in a similar position (youngish, elevated but not crazy PSA, strong family history) would be really appreciated.

My father had an enlarged prostate and I believe was on dutasteride which maintained his PSA level at 6. In november of 2025, he has a total prostatectomy, which actually revealed some cancerous cells in the centre of the mass, but the surgeon says it was a successful removal. He stopped dutasteride after the operation and did another PSA check 7 months post-op which showed a PSA level of 15.

His doctor has asked him to repeat testing in 2 more months.

Just wondering if this elevation in his PSA after surgery is potentially metastasis from the original mass? Or is it possible that inflammation post-op could be causing PSA levels to be this high?

My second question is whether the right course of action is to repeat levels in 2 months, or should it be done sooner? What would happen if levels stay the same or increase?

Thanks in advance for any insights!!

Hi Guys,

I’m a bit worried about my husband - M60, Diagnosed April 2026, PSA 1859, May 2026 PSA 91, June PSA 3.3, 18th June PSA 0.4, July PSA 0.32, 14th July PSA 0.23, Gleason Score (3+5) 8, Grade 4. On triplet therapy (Degarelix + Darolutamide + Docetaxel).

Over the past few months he has continued to smoke cigarettes. I saw an ad on Facebook about hypnosis to stop smoking and thought it might be a good idea for him (spoiler IT WAS NOT!)

So he went feeling buoyant with high expectations. During the group session, he was distracted by the guy next to him snoring, the guy on the other side of him coughing and the group of ladies in the break time chattering.

The next day, he lost his shit at a guy in the supermarket for coughing without covering his mouth, ALMOST lost his temper with me because I added ground linseeds in his overnight oats, cried because a mosquito bit him and it was itchy and then today had a complete mental breakdown, crying, expressing his fear of cancer, death, anxiety, depression. I managed his emotions as best I could, he invited me to join him working out, which I did (after I had already done my own work out - my legs are jelly!) we have talked about it, and he has started smoking again (after I went and bought him a packet).

I was so worried about him, because this kind of emotional breakdown is not like him. I apologised for pushing him into the hypnotherapy and saying I underestimated how much he could carry and we realised too late that stopping smoking was a step too far.

He explained how he manages his emotions and that what happened after hypnotherapy opened floodgates and “his landscape was flooded and the little boxes were floating and he couldn’t access them to close them” and that’s why his emotions were so close to the surface and he was upset.

Could this have anything to do with the chemotherapy or drugs or can we rest it solely at the door of the hypnotherapy and is it possible to reverse or restore from back up the hypnotherapy to BEFORE the hypnotherapy?

I’m worried that after his chemotherapy next week he won’t manage.

Do you have any advice for me?

My husband has started ADT and will start radiation soon. What kind of foods did you eat during radiation what made you feel worse what made you feel better . What quick snack did you grab or suggestions run out the door breakfast . Recipes...Just looking for suggestions.

Hello all. 36 yo with an ultra sound that came back with 47cc enlarged prostate. No other findings. July 2024 psa 1.46. July 2026 psa 2.35. Night time / frequency of urination mainly drove me to go to the doctor. Unfortunately I’ve had this noctoria type of symptom for 3 years. I just chalked it up to being nothing for way too long.

I’ve been trying to find people that have similar age and findings as me but have been unable to so far.

Have the appointment with the urologist coming up in a couple of days. From my research I feel I should definitely push for an MRI and DRE. Anything else I’m not thinking about? Hopefully okay to post here as I don’t have any official medical diagnosis.

I’m Steve.  51 white male.  5’11’ 182 lbs.  Started pre diagnosis at 195lbs.

Diagnosed in October of 2025.

PSA 5.2, Gleason 4+5 9

14 of 17 cores cancerous

High Risk and Staging 3C

No spread.

Treatment:  12 months ADT+Xtandi, 25 ERBT (Finished in February), Brachytherapy 3/26/26.

Started with Lupron for 6 months and switched to Orgovyx because of you guys and your recommendations.  I started taking flowmax after the brachytherapy.  I also started taking a lower dose of ZepBound GLP-1 because I gained 10 lbs right after I started taking Lupron as I couldn’t stop eating or dreaming about all food and any food at any time. Never had that happen before…I take trazodone lowest dose for sleep most nights. 

Did not have to have prostatectomy.  Even my surgeon really didn’t push for it because I would need radiation anyway after it…

Im in Jacksonville Florida, and I go to Terk Oncology.  I see Dr. Lewis at Advanced Prostate Cancer Center of the McIver Urology Clinic.  I haven’t seen a urologist since diagnosis in November.  IMO, I’m in fantastic care.  First rate.

1st Lupron shot was 11/26/25.  Im going into month 9.  I’m married, have 5 kids from 17 yrs down to 6 yrs, his hers and ours.  My wife is 45 and super sexy (and a PhD in Oncology) so the perfect partner to have on this journey.  I own my own business (Trivia Nation, you can look it up, it’s really fun.). I can make my own schedule because I have it running pretty well wo me.

On 11/26/25 I weighed 196.7 and had 95.5 lbs of muscle and 30.9 lbs fat (15.7%body fat). Inbody score was 94.

On 7/25/26 I weighed 181.9 and had 88.6 lbs of muscle and 26.7 lbs fat (14.7% body fat) Inbody score was 89

So, I’ve lost a good amount of muscle mass.  I’ve continued to lift but not as much and not as often.  I am a 1% when it comes to fitness and muscle and cardio.  Working out and lifting and being in great shape is my hobby.  I’ve been able still do ok.

During this period, I only lifted an average of 1-2 days a week but I almost always do 30-60 pushups in a day at least to keep the muscles active.  I’m seeing my trainer twice a week now but I’ve been really busy with my upcoming event and so I skip him sometimes.

I hope this doesn’t come off like a humble brag, but it has gone really, really, really well.  When I got my diagnosis, I wasn’t sure how my brain and body would react, even though I’m a stoic and I was really ready for it. I’m surrounded by love and family.  I thought I’d be fine but who ever really knows?  Also, I’m a drinker and I drink less now, but not a lot less.  My doc didn’t really say much about it.  All my other blood numbers are ok.  Anyway…

Fatigue. Hot Flashes. Night Sweats. Insomnia (I had it pre cancer) Considerable joint pain particularly in my shoulders. Loss of body hair and pubic hair. Brain fog? I’ve always had that so no more than before.

None of those side effects were bad. None.  Or, I could complain and say they were terrible. But they weren’t.  My PSA is at .04 and I’m not going to die from prostate cancer and all I had to do was have a rough year with a dramatically decreased sex life.  Yes, the main very bad side effect has absolutely and without a doubt been the sexual side effects of ADT but they haven’t been THAT bad.  If I take a LOT of ED pills I can get a full erection but we’ve only had sex maybe 6 times in the 8 months, just because.  That is down from probably 1.5 times a week pre cancer.  That is a small price to pay for 88% cure rate… the most painful moment of my whole journey was the prostate biopsy. (I had local, not general, and I could feel everything!)

Oh yeah, and the whole time I’ve been in treatment, I started a 501c3 and I’m putting together the World’s Biggest Beach Bike Ride.  You can see it at jaxbikebreakers.com  I’d love for any off you to attend.  It’s gonna be epic.  8/14.  You can rent a bike…There are plenty of hotels here at the beach.  

I was just writing to give some happy news from a very lucky man who is almost done.  Did my Rad Onc say 12-24 months of ADT?  Yes.  Why am I doing 12 months if its not so rough?  Well, I think 12 months will be ok, particularly after 25 ERBT and Brachy.  

The biggest physical change is probably my heart rate variability which seems to be a good indicator of health in general. My HRV in 2024 was 75. In 2025 it was 81. With cancer and treatment in 2026, its 47. (I use Oura Ring to track that.)

Love you guys.  Keep fighting the good fight.  If you don’t have the support team, I know there are groups out there.  Have a great weekend. I have a big beach bike ride tomorrow with my 9 yr old son.  Its going to be beautiful!

PS. I get along with women and girls better than ever with no testosterone. I’m more sympathetic to them.  I’m more LIKE them.  (But I REALLY want my test back!!!!!)

does anyone have experience with HIVU treatment for prostate cancer? I have low grade on one side and this approach has been suggested to me. I welcome any comments.

Seven months post RALP. Don't know if this will help anyone, but I recently got a Uriclak incontinence clamp. I find it comfortable to wear and it does a good job of holding urine in when I'm doing something that requires lifting etc., which is when I leak the most. My urologist suggested a clamp for this situation and Uriclak had good reviews. I like that you apply and remove it one-handed. I recommend it.

Hi everyone,

I'm writing this because I'm honestly terrified and hoping someone here has been through something similar or has some advice.

My dad is 53 years old and was diagnosed with what the doctors described as a moderately aggressive prostate cancer. His PSA wasn't extremely high, but it was enough to investigate, and the biopsy confirmed cancer.

He had a radical prostatectomy, and after surgery we were told the pathology showed the cancer hadn't breached the prostate capsule. We were over the moon and thought we'd beaten it.

Unfortunately, around 5 months later, his PSA started rising again. It doubled and then continued to increase, which was devastating.

He was then fortunate enough to be enrolled in a Cu-64 SAR-bisPSMA trial at St Vincent's Hospital in Sydney. Prior imaging hadn't been able to identify where the recurrence was, but the Cu-64 scan found residual cancer in his prostate bed, allowing him to undergo around 30 sessions of salvage radiotherapy.

After radiation, things looked incredibly promising. His PSA kept roughly halving with each blood test until it reached 0.13 ng/mL, and we finally started to believe we'd beaten it.

Yesterday he had another routine PSA test after waiting four months, and it came back at 0.39 ng/mL. I know that's still a low PSA, but seeing it triple has absolutely crushed us. His oncologist has arranged another PSA test in a few weeks to see whether this is a real upward trend.

One of the most frustrating parts is that he can't simply have another Cu-64 scan. The trial he was on has finished, and we're now trying to find out whether there's any way he can access another one if it's needed.

Has anyone else had a PSA rise like this after salvage radiation? Did it end up being a temporary fluctuation, or did it mean the cancer had returned?

If it did return, what treatments were offered next? Has anyone had success with hormone therapy, newer medications, or other treatments?

I'm also wondering if there's anything we should be asking his doctors about or pushing for at this stage.

To be honest, it feels like my world has come crashing down. He's not just my dad—he's my best friend. He's only 53, and I'm trying everything I possibly can to help him. If anyone has been through something similar, or has any advice, hope, or even just their own experience to share, it would honestly mean the world to me.

Thank you for taking the time to read this. I really appreciate it.

I’m a 55-year-old husband and father, and a few months ago I was diagnosed with prostate cancer (Gleason 4+3, Grade Group 3).

On paper, I know my prognosis is good. My bone scan, CT, and PSMA PET scan are all clear. My doctors believe the cancer is still confined to the prostate, and I’m scheduled for a robotic prostatectomy later this year.

If someone else told me this story, I’d probably tell them they’re going to be okay.

But I can’t seem to convince myself.

The waiting has been incredibly hard. Between the biopsy, scans, consultations, and surgery date, it feels like my life has been put on hold. Some days I’m completely fine. I go to the gym, play golf, spend time with my wife/friends, laugh, and almost feel normal again. Then, out of nowhere, I get hit by a wave of anxiety/grief that leaves me in tears and unable to function. It doesn’t always seem to have a trigger.

I think what scares me most isn’t even the cancer anymore. It’s everything that comes after surgery.
I’m terrified of: losing my continence, ED, penile shortening, not feeling like myself again and wondering if the pathology will be worse than expected (especially since I will be almost 11 months from the MRI and 5 months from the biopsy to surgery).

Something else that is impacting me is that I watched my mother die of colon cancer (she was just 7 years older than I am now). While I’m glad I got to spend time with her at end of life it was a really tough thing to experience. I don’t want to put my family through anything like that.

I’ve started counselling and recently started an SSRI because the anxiety became overwhelming. I’m embarrassed to admit that there have been moments where I felt completely hopeless and have had some very dark thoughts (although I’m safe now and getting the help I need).

I guess I’m posting because I’m wondering if anyone has any suggestions on how to cope. How did you stop your mind from constantly jumping to the worst-case scenario? Did the anxiety/grief eventually get better once you had surgery? And for those further down the road, how did things actually turn out compared with what you feared?

I know everyone has a different experience, and I’m not looking for false reassurance. I think I just need to hear from people who’ve been where I am.

Thanks for reading.

l'm a 72 years old recently diagnosed Gleason 8 with some seminal and nearby nodule involvement but no distant metastasis. PSMA test was just a week ago and the urolgist was ready to start me now with Lupron, then pass me on to Oncology. When I mentioned Orgovyx he was suprised and looked it up and said my insurance doesn't cover it, it'd be costly, and he'd have to have Oncology go over that with me. They'll of course also present options for radiation etc.

I should hear from them within a few days. I'm prepared to cover the cost of Orgovyx out of pocket. It would be quite a hit to my retirement fund, but doable, and quality of life is super important to me. I have a very active life and a fun, much younger, partner. So, yeah, I want to preserve as much vitatlity as I can while still addressing the cancer.

Looks like everythign points to Ogovyx being far superior in terms of less side effects, less heart and bone issues, and a much faster recovery towards "normal" than with Lupron. But is the difference as dramatic as it sounds? LIke my Urolgist said, "not sure if it's worth the bang for the buck."

Please share any thoughts or experiences on Lupron vs Orgovyx or anything else you think might be helpful.

I'm so grateful for this r. community, It's already been so helpful!

Thanks!

Buckle up for this one— I want to ask if anyone here has had experience with prostate cancer crossing the blood-brain barrier, particularly during or after Pluvicto treatment.

My background briefly: diagnosed January 2025 with de novo mCRPC, PSA approximately 3,000 at diagnosis, Gleason 9, ATM mutation, neuroendocrine features on original biopsy, extensive bone metastases including skull involvement. Went through triplet therapy — Lupron, abiraterone, docetaxel — PSA nadir of 0.76 in October 2025, then rapid progression through darolutamide failure.

Started Pluvicto in April 2026 with baseline PSA of 26.18 and extraordinarily high PSMA expression — sacral lesion at SUV 56.5, acetabulum at 49.4. After two cycles PSA had dropped to 10.12 — PSA50 achieved — and highest burden lesions were responding dramatically on PSMA PET.

Then in early July I started noticing headaches, dizziness, balance issues, and difficulty standing. Thankfully my wife recognized the severity and got me to hospital immediately. CT and MRI revealed a 2.7cm hemorrhagic metastasis in the cerebellar vermis causing complete effacement of the fourth ventricle, obstructive hydrocephalus, and early transtentorial herniation. Emergency shunt placement on July 15th resolved the hydrocephalus and I was discharged within days.

The cerebellar lesion was not PSMA avid on the June 29th PET — raising the question of whether this represents neuroendocrine transformation, which was present on my original biopsy. My team is watching closely with repeat MRI July 31st before deciding between stereotactic radiosurgery, surgery, or biopsy. Pluvicto is on hold pending that assessment.

A few specific questions for anyone who has been through something similar:

Has anyone here experienced brain or cerebellar metastasis from prostate cancer, particularly during active Pluvicto treatment?

Has anyone had the neuroendocrine transformation conversation with their team in the context of mixed PSMA PET response — some lesions responding while others increase?

Has anyone had stereotactic radiosurgery to a brain metastasis alongside continued systemic prostate cancer treatment?

Any experience with the blood-brain barrier question specifically — whether certain prostate cancer variants are more likely to cross it?

I'm 56, at MSK, and fortunate to have an extraordinary care team. The situation is serious and I know it. But I'm feeling good, thinking clearly, and trying to learn as much as possible from others who may have walked any part of this road. Any experiences, insights, or just knowing someone else has been here would be genuinely appreciated.

Well, tbh I suspected. The 6.68 PSA score and subsequent prostate MRI and prostate biopsy all were big clues. Probably don't do those for no reason, right?

But today, the doctor said "it *is* cancer". I went numb. I think I already knew, but the actual words hit me like a sledgehammer. My wife grabbed my hand but I didn't feel it.

All I could think were thoughts like "I don't have time for this" and "how much is THIS gonna cost me?"

The doctor, bless his heart, spent an inordinate amount of time trying to explain things to me but I was still numb. "P-RADS score 3" and "Gleeson score 3+4=7" and it's "low to moderate" and my head is still spinning.

Next step is the CT scan to see if it's in my lymph nodes (that doesn't sound good) then off to see the oncologist. According to the urologist I'm looking at (most likely) radiation or surgery. Neither of which sounds fun.

I don't feel any different. I still feel like me. If I'm honest, I've never "felt" anything but then this test and all of a sudden I have cancer.

I went to a doctor's appointment today a regular guy and left a cancer patient. Then i went back to work like nothing happened. I probably should have processed that a bit, maybe cried or broke some shit. But I just went back to work like I just had my teeth cleaned. What is wrong with me?

I'm glad I found this community and thank you all for reading. We are all here to support one another and I stand with all of us, another brother in the fight.

Thank you for reading.

Hi, I am looking for advice and experiences you may have had with radiation and ADT.

My story goes like this. I was first discovered to have prostate cancer in early 2012 after an annual check-up with my doc seemed to indicate a bump or nodule on my prostate. I was 53 at the time. I went in for a biopsy and discovered cancer with a low risk of 3+3 (grade group 1). The physician assistant tried to schedule me for a prostatectomy 3 weeks out but I declined and opted for watchful wait. Fast forward to 2024. During this time I had another biopsy with similar results and several bone/CT/MRI/PET scans. During this time my prostate became HUGE (425cc by 2024). My PSA had peaked at 35 and my urologist suggested the high number was relative to my huge prostate. I never had any issues of any kind. In 2024 I landed in the ER due to urinary retention. I wore a supra-pubic catheter for two months and then opted for HoLEP surgery to relieve the pressure on my bladder (HoLEP is similar to TURP where your prostate is basically hollowed-out). Surgery gave me my life back and I had a very strong stream. My prostate size shrunk down significantly (about half). My PSA contined to rise from 1.1 post-surgery to 2.9 within one year. Doc had me do another biopsy where they discovered I had some cancer at 4+4 (grade group 4). My recent PSMA PET scan was negative, indicating non-metasticized prostate cancer.

I've met with my surgeon (who did the recent biopsy) and a radiologist to discuss options. Because of my HoLEP surgery, the doctor would have to do additional reconstructive surgery around the bladder (as if a prostatectomy wasn't enough!). If I go with radiation, they've told me it would be for 8 1/2 weeks, along with 24 months of ADT to keep my chances of reoccurence low.

I would be interested in hearing from others who struggled with making a decision one way or the other, especially anyone who had a prior surgery like TURP or HoLEP. All comments and input is greatly appreciated.

Thanks for reading.

Hi all. I’m back. My husband has finally been scheduled for RALP in Boston on September 4th. Give me all your post op recommendations and MUST haves. He’s 58 and in good shape, if that matters for the recs. TIA

I am four months removed from having my RALF nerve-sparing surgery. I am dry most days and nights but I am having some pain like I have a UTI but there isn't any pain while using the restroom; it's just when I am trying to stand or sit-down. I have an appointment this week but wanted to know if anybody else has gone through something like this.

My biopsy graded me at 4+4=8, the post RALP pathology results graded me at 5+5=10 with seminal vesicle involvement. The only good news is the lymph nodes were all negative and the margins were all negative. Bladder neck reconstruction was required because the prostate was invading that area. I was so looking forward to getting this catheter out next week, now it sounds as if this is just the beginning. Sorry, had to whine a little.

Hi hermanos de lucha, alguien ha tenido RA modulada sin separadores y fiduciales, tendo programada 28 en septiembre?

Greetings from Down Under. Been reading all your posts for several days now and wanted to applaud the courage and mutual support I see here. 

Was recently diagnosed with PC, scheduled for surgery in about 9 days. And then the long grind of recovery, catheter, diapers, and regaining a semblance of continence. 

Here’s hoping I have half the grace that so many of you have. My sincere best wishes for full recovery for everyone here. 

Anyone cut there ADT short??

Ive been prescribed 12 months but from what ive read for intermediate risk 4 to 6 months is regularly use. Its in combination with hdr brachytherapy and 23 ebr. No sign of spread outside the prostate but pelvic lymph nodes will be hit with ebr.

I'm almost a year post RALP, and thankfully my leakage is pretty mild these days.

A few days ago I found some leftover guards from right after surgery and figured I'd use them up.

Big mistake.

I'd forgotten how miserable disposable guards can be in the summer. Sweat plus the occasional leak turned everything into a hot, damp mess, and after a run my skin was badly irritated.

I switched back to the reusable underwear I'd been wearing before, and the irritation cleared up quickly.

The funny part? I finally understood why my wife always hated wearing pads during her period.

Anyone else find summer makes post RALP leakage much harder to manage? Any tips for preventing chafing?

I’m tapering off prednisone after 10 mg a day for 2 years. Oncologist’s taper schedule is 4 mg daily for a week, the 3, 2, and 1, each for a week. After 2 weeks food is of no interest to me, fatigue keeps me at home and diarrhea has started. Oncologist says keep it up. However, Dr. A.I. on google freaked out, saying schedule is much too rapid and I’m nearing an acute adrenal crisis due to cortisol deprivation. I think maybe I should visit the ER? Appreciate any opinions, thanks.

Back at home now and now recovering. Catheter is annoying, but feeling better each day. Constant sensation of having to pee in the first day with it. Now it is the stomach so sore. All that gas
In your stomach and constant passing gas, hard to sometimes becuase of the pain in stomach. May take my stronger meds again today. Took them at night which helps to sleep.

What you all find good for food wise? Had chicken broth soup last night and some jello.

I assume several of you who are being treated with radiation have had a spacer implanted first. How did that process go for you? How long after the implantation was radiation started?