r/ProstateCancer • • Jun 26 '26

Mod Post New rules that change this community

95 Upvotes

Hey hey hey,

Quick update to let you know there has been a refresh and evolution to the community’s rules.

The last month has been tremendously busy and challenging for the mod team. The amount of permanent bans we had to give in June surpass any month previous with the leading reasons being tacky (and beyond obvious) marketing tactics attempting to sneakily grab new clients and piggybacking off of Reddit to appear higher in Google search.

These cavemen often do not respect bans either since our subreddit is so useful for so many medical adjacent marketing strategies. So putting an automatic stop to that really ruins the potential of huge planning. Which is selfishly hilarious.

A few huge changes you need to be aware of:

- We are now a 100% discussion based community. No links are allowed whatsoever. This decision was made purely off the giant amount of spam posts and marketing we have had to remove and deliver subreddit bans to. With a significant uptick in the last three months.

- No AMA’s allowed: A new “common” marketing tactic is disguising AMAs as a pure sales tactic OR for the sake of assisting in organic keywords that Google likes.

- No studies of any kind: We are no longer allowing any sort of study to be posted in our community. This community deeply cares about keeping a safe environment to discuss typically very private concerns. The idea of a company profiting from that in some way is not something we will support anymore. This is ONLY pertaining to companies or researchers attempting to recruit members. This is NOT regarding referencing medical studies in discussions.

Along with the above, there have been a some updates to all rules. So we suggest glancing at them to make sure you’re up to speed as a member in the community.

Any and all decisions we make has our community members as a whole in our absolute best interest. Please understand many thoughts, planning, and legitimate data understanding to make these changes with that main goal first and always.

There’s a massive amount of things not shown to our members that the mod team is dealing with day in and day out in the background with monitoring, reporting reviewing, and private message back and forth. So we can assure you every rule has a purpose.

Thank you for keeping this community welcoming, active, and positive.


r/ProstateCancer • • 7h ago

Question Please share surgery positive stories

10 Upvotes

Evaluating right now. Can those of you that have selected surgery share some success stories? Seems we don’t hear about those as much. Thank you very much. Just getting info right now as I decide.


r/ProstateCancer • • 4h ago

Concern Worry so far - High PSA 4.9 - 51yr old

3 Upvotes

Afternoon - hopefully im worrying over nothing (but I guess that's what everyone says)

I dont know of family history as my father and grandfather both past at the age of 47 due to heart disease.

Im pretty active 51yr old, I go to the gym 4 times a week and walk 12k steps a day - done Triathlons/ ironman and marathon swims in the past.

25/9/26 - I went to a private doctors for Fatigue and achy joints elbows/wrists & Knees. The doctor recommended a blood test with PSA.

26/9/26 - PSA results 4.9 and have been referred to Urology. (I was told that was high)

5/10/26 - Went to see consultant and had DRE and he thought that was fine (I think)

8/10/26 - PSA test done again.

20/10/2026 - PSA ReTest results were still high today 4.3 (they were 4 9), so having MRI tomorrow 🤞

29/10/2026 - MRI results back Consultant said I have a suspicious area / dark area (didnt look great on screen) Could be cancer - might not be.

Im now going in on the 3rd Nov for a Template Prostate Biopsy under general annesetic.

Very nervous and worried about the outcome - stress levels are through the roof.

What's the Template Biopsy like and how long for results normally?

Thanks everyone for any advice.

Mark


r/ProstateCancer • • 3m ago

Question Tadalafil users - What daily dose is usual for return of daily "feelings" down there? I have been on Orgovyx for 2 months and normal feelings have gone to nothing.

• Upvotes

r/ProstateCancer • • 7m ago

Question PSA Test - do they use same standards or are there different machines that test PSA but have different ranges?

• Upvotes

My PCM PSA test came back 59.2 and my Oncologist PSA is 3.3.


r/ProstateCancer • • 9h ago

Question What is incontinence after RALP like?

6 Upvotes

Hi Team,

I will have RALP on Dec 11th and am wondering how the incontinence afterwards manifests.

Is it like when you have a full bladder and can't hold it anymore, so the dam breaches and you have a squirt or flood?

Or is it more like you just leak without noticing until you get the wet feeling around your junk?

Any insights are welcome.

Thanks in advance.

EDIT: I am more interested in what it feels like. As in the sensation. I am prepping for the surgery for 6 months at this stage and researched remedies and recovery, but how the incontinence actually manifests/feels is harder to get info on.


r/ProstateCancer • • 5h ago

Question 10 years after LDR brachy now developing urinary retention

1 Upvotes

I underwent ldr brachy 10 years ago with minimal side effects but now in the past few months have developed problems establishing a stream and not completely emptying my bladder. I'm wondering if this is a latent side effect from treatment or just another sign of old age creeping in I'm 72 now.

Anyone experience this? What did you do about it?


r/ProstateCancer • • 1d ago

Surgery My turn to dance with the butt-rooting robot

29 Upvotes

UPDATE: I hear everything went well. I’ve been making notes of the experience for a follow-up post in the near future. Thx for all the well wishes fellas!

 

 

Hello Fellow Travelers

 

Today is the day. Just woke up and at a local hotel at UCLA. Showered and ready to go. Taking care of some last minute tasks before heading to checkin.

 

I had a doc on Reiter's team call me yesterday to let me know my case was pushed down from the 1st to the second case of the day. A bit more sleep but a longer wait to eat.

 

WAIT. As I typed they called to advise me the case didn't proceed as planned and I should head over as soon as I can. Gotta corral the family and get to admissions. Luckily its a 10m walk.

 

I'll post more later this week about the experience, recovery and outcome. Wish me luck friends. I'm off to become a new man.

 

See you on the other side!


r/ProstateCancer • • 21h ago

Test Results Prostate Metastasis

5 Upvotes

Good afternoon. Briefly, im early 60s first diagnosed with PC in 2017 ( Gleason 3+3) and then with Kidney and bladder cancer in 2023. Evicted prostate in 2017 and left Kidney in 2023.

After the prostectomy my PSA was never zero. Went to .02 and stayed there for years. Then a couple years ago it started doubling every 8 months, on average, and my urologist said they likely didnt get all the cancer. Ok, no sweat yet.

Finally got to 0.25, very, very low but high enough for a PSMA PET scan. So we did that. And they found a spot in my right hip socket area with a strong suspicion for PC. Could be something else, but with the rising PSA I'm thinking cancer. But here's the thing... a Gleason 3+3 shouldn't metastasize almost ever and there is no other PC detected. So did it learn to walk? Goofy.

My urologist is out of town until December. I've Googled my options (never Google your options, kids, it says I've 18-24 months at best 😶) and have learned enough to know a bone doctor and an oncologist will likely need to be consulted along with some radiation (couple of flavors to choose from) and some side pills to help with bone density and treatment.

I'm already odd enough the University of Colorado has me in an open ended study for urinary oncology, so this is kind of par for the course. But have any of you seen or experienced this sort of thing?


r/ProstateCancer • • 1d ago

News Promising early data from new J&J advanced prostate cancer drug

27 Upvotes

Encouraging results for a Phase I. Looks like they will be doing a Phase II. Targeting patients that have failed multiple prior treatments:

Johnson & Johnson Reports 75% Tumor Response Rate for JNJ-6143 in Advanced Prostate Cancer
10/26/2026 04:50:31 [MTN]
(MT Newswires) -- Johnson & Johnson's (JNJ) investigational advanced prostate cancer drug JNJ-6143 showed a 75% complete or partial tumor response rate among patients who had received multiple prior treatments in a phase 1 trial, the company said Monday.
In the 50 mg dose cohort, 77% of the 38 patients in the ongoing study achieved a confirmed reduction in prostate-specific antigen levels of at least 50%, and 48% had reductions of at least 90%, the company said.
Patients had received a median of four previous treatments. At the analysis, 71% of those taking the 50-mg dose remained on treatment after a median follow-up of 5.6 months, Johnson & Johnson said.
The company said the most common treatment-related side effects were elevated cholesterol, nausea and elevated triglycerides, and most treatment-related adverse events were mild to moderate.
The evidence supports continued development of the drug, including a Phase 2 study, the company said.


r/ProstateCancer • • 22h ago

Question What would you do ...

3 Upvotes

Hi - also pretty new to this group. Recently diagnosed with Gleason 2 3+4, 10% 4 and low density. I'm awaiting genomics testing results. Surgery seems pretty scary, as I do seem to bleed a bit after procedures (biopsy and colonoscopy) - but getting that tested as well. Other key factors for me are I'm 70 years old, so if I am able to actively monitor, I might lose Option of surgery down the road. I am in good health and very active and my weight is lowest in many years (164 lbs. and I'm 5'10") My prostate size is also 70 grams, so again, if I'm going to get surgery, now might be the time. Also, surgery would clear up issue of having to take medicine to pee better. My Uncle is 101, and he had Brachy 20 years ago and is still going strong.


r/ProstateCancer • • 21h ago

Question Antibiotics affect PSA

3 Upvotes

I’ve read some pretty convincing information that if a man was taking some strong antibiotics about 30 days before a blood test it could throw off a PSA test. About 30 days before my test I was briefly hospitalized with post viral pneumonia. I took both amoxicillin and azithromycin. Could this be the cause of an increase in PSA. BTW 68 yo.

EDIT: A thousand pardons I had my information mixed up it was not the antibiotics it was that with the pneumonia only 30 days prior my body was still trying to get over the infection. Again, my deepest apologies as I’m just a little discombobulated over the rise in PSA. It’s risen before and then gone back to normal when I was 65.


r/ProstateCancer • • 1d ago

Other My father has an increased risk of prostate cancer, yet he doesn’t care about his own health.

7 Upvotes

Hello! I’m 25F and I imagine this is a predominantly male space, but I’m here because I honestly don’t know what else to do. I don’t know whether this is something most men can relate to or whether I’ve simply had the bad luck of having a father who doesn’t care about his health at all, even when he really should.
To give you a brief background, I’m 25 years old, an only child, and I work in healthcare, but I live far away from my 55-year-old father. Every time we see each other (which is rare), I make a point of trying to get him to undergo medical tests, even though it’s incredibly difficult. He had a brother who died of prostate cancer, and there is a BRCA2 mutation in our family. I’m currently waiting for my own genetic test results because my father refuses to get tested.
What I’m trying to say is that I feel completely exhausted. He refuses to get even simple blood tests, such as a PSA test and other routine exams. He wouldn’t even agree to genetic testing that could potentially help save his life and mine as well, if you know what I mean.
Everything I’ve managed to get him to do has come after countless tears and endless pleading. I begged and cried for him to get the COVID-19 vaccine, and I cry every single time I try to convince him to get medical tests done.
*His last tests were done a year ago, and his PSA level was 2.7 ng/mL. From what I’ve read, that seems to be within the normal range for his age. That’s it.


r/ProstateCancer • • 22h ago

Question Lupron and cognitive issues

3 Upvotes

My father's PSA went way down after a year of Lupron, but suddenly he experienced aggressive cognitive decline. They thought it was a stroke at first. He is confused, having trouble with words and very emotional. Now it's a waiting game to see if things will get better once the drug is out of his system. (Which looks like it could take 4-12 months!)

Has anyone experienced this? Is there medication to speed this stage along or help with the side effects? Thanks for sharing any info we might be able to bring to his doctor. 🙏


r/ProstateCancer • • 21h ago

Question Spasmming pain 3 weeks post RALP

2 Upvotes

I’m hoping someone has some insight.

45/M. 3 1/2 weeks ago went through RALP with some nerve sparing. Lost one but kept the other. Since recovery things were going well. Very little leakage,sore but healing wounds, no erections. Very happy.

Saturday night we walked out two small dogs. Had a few chicken salad sandwiches for supper, and sat down to watch some Crystal Lake.

All of a sudden just laying on the couch I get a twinge that turns into a spasm. I couldn’t walk down the stairs. I waited it out then went for a shower. Happened again in the shower. Got dressed feeling off, got a heating pad and sat on the couch, I was good for about 30min then laid on my left side and was hit with the worse one yet.

Pain starts at the tip of the penis, down to my recall’s, across pelvic floor to butt hole and as the worsen my abdomen where I have my surgical would.

Worse pain I’ve ever experienced. Spent the night in the ER filled with Dilauded, Tramadol, even some fent. Had piss text, blood text, X-rays and 2 CT scans. No real findings. Small amount of puss in urine so started antibiotics.

I was sent home a few hours ago and I’m in bed rest l. Pain meds and Ativan for the spasms. They barely touch it.

Looking for any first hand advice.


r/ProstateCancer • • 1d ago

Question Surgery?

20 Upvotes

I am new to this club. But from what I have read- why would anyone choose surgery over radiation or srbt? Seems long term survival stats are nearly the same? But way less short term side affects with radiation? What am I missing? Thank you very much. Hearing from real guys who have been thru this helps so much.


r/ProstateCancer • • 1d ago

Question 58M, Gleason 8, PSA 34, organ-confined on MRI — surgery vs radiation? Staging not done yet

3 Upvotes

My father (58) was just diagnosed. Posting the full details because I've seen that helps people give useful answers here. We see the oncology team tomorrow and I want to ask the right things.

**PSA:** 34.3 ng/mL (Oct 2026). Earlier readings: 35, then 27 after a course of antibiotics, then back to 34.3.

**mpMRI (contrast):** PIRADS 5. Lesion 2.7 x 1.4 x 2.4 cm — right peripheral zone, central zone, periurethral transition zone apex to base, left PZpm apex and mid, and anterior fibromuscular stroma. **Capsule intact, no extra-capsular extension. Seminal vesicles unremarkable. Neurovascular bundles unremarkable bilaterally. No significant pelvic nodes. Bones nil significant.** Prostate volume 25.7 cc with intravesical median lobe protrusion.

**Biopsy (12-core TRUS, 6 sites reported):** acinar adenocarcinoma, **6 of 6 cores positive, bilateral**

- 4+4=8 (GG4) — 40% of core

- 4+3=7 (GG3) — 50%, 55%, 65%

- 3+4=7 (GG2) — 10%, 65%

- **Perineural invasion: not identified in any core**

- **Lymphovascular invasion: not identified in any core**

- Necrosis identified in 3 of 6 cores

**Not done yet:** bone scan / PSMA PET-CT.

Questions:

  1. For bilateral, all-cores-positive Gleason 8 that still looks organ-confined on MRI — how did you decide between radical prostatectomy and radiation + ADT? What would you do differently?

  2. Anyone with a similar mix (one 4+4 core, rest 4+3 and 3+4)? Did final pathology after surgery upgrade or downgrade?

  3. How hard should I push for PSMA PET-CT over a conventional bone scan at this PSA?

  4. Has anyone been offered perioperative apalutamide + ADT around surgery (the PROTEUS regimen)? Is it being used outside trials yet?

Thanks — any experience appreciated.


r/ProstateCancer • • 1d ago

Update Update: 47M, France, new MRI shows likely EPE, RT + ADT coming

2 Upvotes

Hi all, a quick update for those who followed my story.

Recap:

  • 47M, France.
  • PSA around 20 in Nov 2025.
  • MRI found a PI-RADS 5 lesion in the right mid peripheral zone.
  • Transperineal biopsy in Dec 2025, 26 cores:
    • Gleason 3+4 (5% pattern 4, some cribriform) on the target.
    • 3+3 on all the right lobe cores.
    • Left lobe negative.
  • Bone scan and PSMA PET (Feb 2026) were clean.
  • Staged cT1c N0 M0, classed high risk because of the PSA.
  • I cancelled the planned prostatectomy and chose radiation.

What's new:

  • PSA was 25.1 in Sept 2026. Doubling time is slow, about 3 years.
  • New 3T MRI on Oct 24, 2026:
    • The lesion is basically the same size: 17×12×12 mm, vs 15 and 19 mm on the two MRIs in 2025.
    • But it's now scored NCI-EPE 3/3, so likely extension outside the capsule at the right posterior side (radiological T3a).
    • Seminal vesicles look normal, no nodes.
    • The first radiologist already had a doubt about the capsule back in Nov 2025.
  • Current plan: 20 RT sessions + 6 months of Orgovyx (relugolix). I haven't started it yet.
  • Next steps: PSMA PET on Nov 9, meeting the radiation oncologist on Nov 16.

Questions for those who had extraprostatic extension (EPE) seen on MRI:

  • Was it confirmed later, by pathology after surgery or by the PSMA PET, or did it turn out to be overcalled?
  • Did anyone get a second read of the MRI that changed the EPE score?
  • Did the EPE change your RT plan: longer ADT (18 to 24 months instead of 6), wider margins, a boost on the lesion, pelvic nodes included?
  • With EPE, how did your PSA behave after treatment?
  • My biopsy was 10 months before this MRI. Did your doctors say biopsy scarring can mimic EPE?

Thanks for reading, and thanks to everyone who answered last time.


r/ProstateCancer • • 2d ago

Question Surgery

7 Upvotes

Hey, I have been told to lose atleast 10kg to have surgery. I was 120kg and so far have managed to get down to 117kg. I’m finding it hard to lose any weight and worried i’m not going to be able to have the surgery and forced into radiopherapy. Anyone had this issue?


r/ProstateCancer • • 2d ago

Question Ed

3 Upvotes

I truly am confused on ED discussion as I think thru options. When you say ED it can mean so many things. Erections. And then with and without medicine. So when you say you have ED- does that mean natural erections? Versus you can get them with medicine? Just trying to understand. And then it seems people can have orgasms without an erection? That is something I was not aware of. Honest feedback it appreciated.


r/ProstateCancer • • 2d ago

Question For those who were able to get erections back

23 Upvotes

Were there things that you did that you felt helped contribute to them coming back?

Early on was there any sign of life down there or was there an initial period of nothing?

How old were you when you had the surgery?

How long after the surgery were you able to get an erection?

Did you try any of the injections or pumps?


r/ProstateCancer • • 2d ago

Question Post RALP self catheter removal ???

11 Upvotes

My surgery is coming up and I had a pre-op instructional call where i learned that they expect me to remove my catheter after the expected 7 days after surgery. Honestly, I'm terrified of the thought, has anyone else gone through this? I insisted on driving back to the hospital to have them do it and (I think) they agreed.


r/ProstateCancer • • 2d ago

Concern Libido

13 Upvotes

Hi, I'm 55 and had RALP in Jan. My question is, and driving me insane! does anyone else, or has anyone else experienced the increased libido? I cand get fully erect yet, but can orgasm, but it doesn't help. It is like I'm literally permanently horny or broody. AND the worst thing is I'm single so who would want an over sexed, bent cock, no shooter, for a partner? Yes I know it's not just sex, but sometimes it is! I know I have to reevaluate my priorities but doesn't help when my drive has gone loopy. Please tell me this is normal and will pass :)


r/ProstateCancer • • 2d ago

Question Persistent PSA of ~1 after radical prostatectomy despite negative PSMA PET and lymph nodes — what could explain this?

1 Upvotes

My father-in-law is 56 and had a radical prostatectomy on July 24, 2026 for prostate cancer. I'm trying to understand why his PSA has never become undetectable despite negative imaging.

Preoperative findings

  • mpMRI (May 18): Cancer involving the prostate and medial portions of both seminal vesicles. No suspicious lymph nodes or extracapsular extension reported.
  • PSMA PET (June 18): No evidence of lymph node or distant metastases.

Surgical pathology

  • Stage: pT3b, with seminal vesicle invasion.
  • Gleason score: 4+3, with 60% pattern 4.
  • Positive surgical margin: 3 mm at the apex, with Gleason pattern 3+3 at the margin.
  • 13 lymph nodes removed (9 right, 4 left): all negative.

Postoperative PSA

  • Approximately 4/6/8 weeks after surgery: ~0.9 ng/mL.
  • PSA has remained around 1 rather than becoming undetectable or showing a clear increase.

Repeat PSMA PET
A repeat scan after surgery showed no detectable cancer in the prostate bed, seminal vesicle bed, lymph nodes, bones or other organs. An 8 mm right external iliac lymph node was noted without significant PSMA uptake, with follow-up recommended.

Current treatment
The oncologist has started Firmagon (degarelix), with a plan for approximately two years of ADT and radiation to the prostate bed, seminal vesicle bed and pelvic lymph nodes.

I'm struggling to understand a few things:

  1. Can a 3 mm positive surgical margin realistically explain a persistent PSA of around 1, even when there is no visible uptake in the prostate bed?
  2. If all 13 removed lymph nodes were negative and both PSMA PET scans showed no suspicious nodal uptake, where could the PSA be coming from?
  3. How common is it for microscopic cancer to produce a PSA around 1 while remaining invisible on PSMA PET?
  4. Could the 8 mm external iliac node be reactive rather than cancerous?
  5. Have others experienced persistent PSA after prostatectomy with negative PSMA PET scans? What did subsequent radiation and ADT achieve?

I'd appreciate experiences from people who have been through something similar, as well as insights from anyone familiar with persistent PSA after prostatectomy.


r/ProstateCancer • • 3d ago

Question Cleaning oneself after leakage

6 Upvotes

What do folks use to clean their genitals after minor leakage? My catheter was removed yesterday, still trying to figure out this new way. I am using pads, going to relieve myself frequently to keep leakage down, but there is leakage frequently and not sure whether just wiping off with a wash cloth is good enough or whether there is something more hygienic like baby wipes.

Thanks in advance. (I have already downloaded Squeezy which I only learned about because of this this sub - so thanks for that too. I start using it today).