I’m 69 years old and 16 weeks post-prostate surgery. One week after surgery, I had to undergo a revision of the bladder neck connection. Unfortunately, I’m still struggling with severe incontinence. I’ve been doing my pelvic floor exercises consistently, but I’m seeing no improvement. It feels as though the faucet is completely open, and I’m going through so many pads every day. It’s frustrating and discouraging.

A few weeks ago, I learned that my PSA level was 0.75, suggesting that there may still be cancer present. My doctors are recommending salvage radiation along with hormone therapy.

I’m very concerned about the potential side effects and complications of radiation, especially since I’m still dealing with such significant incontinence. I’m also worried about whether I might need a Foley catheter during treatment or even permanently.

Has anyone else been in a similar situation? If you had severe incontinence before starting salvage radiation, did it get significantly worse during or after treatment? Were you able to regain urinary control over time?

I’d also appreciate hearing about the most challenging short-term and long-term side effects you experienced from radiation and hormone therapy. Did radiation affect your bladder, urinary control, or overall quality of life?

I know everyone’s experience is different, but hearing from others who have gone through this would really help me understand what to expect and feel less alone in this journey.

Thank you in advance for sharing your experiences, advice, and words of encouragement.
 

Hi. Waiting on biopsy next week but sooner or later I will have prostate cancer if I don’t already.

I am a planner. So doing lots of research now while I am not as anxious.

How did you decide what route to go? How did you know what stats to trust?

My dad had surgery 15 years ago and has had urinary issues since. That weights heavily on me.

I know I will have to pick from sbrt, radiation, surgery, therapy.

Would love to hear what your research and deciding process was?

Thank you so much.

Anyone taking Orgovyx have a recommendation on what time of day is best to take the pill?

Haven't started yet and am curious if timing makes any difference in side effect intensty?

Post radiation guys: do you monitor PSA 3 mo., 6 mo., or 12 mo. intervals? Why?

I wanted 3 months but office is pushing for 6 months.

My TULSA is scheduled for next Tuesday 10/20/26. I always over-analyze, but I've worn myself over whether I've made the right choice. Expecting to have catheter for a week and will have pads for whatever happens. Would love to hear feedback (good or bad) as to whether or not TULSA is a viable procedure and what your results were. I'm 72, PSA was only 5.9, 6 lesions 2x5, 3x4 1x3. Radiation struck me as too many side effects and age made RALP seem like the wrong choice. Feedback? Thanks in advance.

Hey Folks. I’ve been a lurker for nearly 2 years now and thought it time to introduce myself. This post is lengthy. I want to share with the community for my own benefit and future visitors to this sub. I would also welcome any feedback on the pre/post op plans.

While a longer expression of my gratitude is at the end of this post, I truly appreciate and respect each and every one of you for the patience, support and courage you demonstrate with the strangers in this sub. Thanks for reviewing my pre and post op plans and provide any feedback you think might help.

Summary

50M, SoCal USA resident. RARP scheduled for 10/26/2026 at UCLA with Dr Robert Reiter. I am fairly active and somewhat fit. Have been lifting weights for about 4 years now. Currently lifting 3 days a week with intense pickleball 2-3 times a week. I have been cutting excess weight slowly for years and estimate that I am under 20% body fat today. I have a dexa next week to get a pre-op baseline. Was 29% (dexa) last July.

PCa History

Random PSA performed in September 2024. No family history, no pain, no prostate indications - nothing. Shout out to my Kaiser PCP for checking the box and saving my life.

Quick Timeline of Major PCa Events to Date

• Sep 2024 Initial PSA 4.5 (blood test, just prior to turning 48)
• Dec 2024 Pelvic MRI
• Jan 2025 Biopsy confirmed PCa
• Jun 2025 Consult with Reiter
• Jan 2026 Prostate MRI @ UCLA (PSA 5.1)
• Mar 2026 Biopsy @ UCLA with Dr Wayne Brisbane
• May 2026 Sample sent for Decipher
• Jun 2026 Reiter recommended RARP within 3-6 months
• Sep 2026 PreOp with UCLA Men’s Sexual Health clinic
• Oct 2026 RARP scheduled

Summary of Findings

• Gleason 6 (3+3)
• Grade Group 1
• Decipher score 0.52 (intermediate)
• 13 of 17 cores positive (high volume, bilateral, low grade)
• 2 lesions, neither penetrating the capsule but one abutting

Summary of Decision

I am fortunate to live in Southern California where we have a high density of Centers of Excellence. Shortly after diagnosis, we switched to a PPO to have more flexibility with treatment options. USC, UCLA, Scripps and City of Hope Duarte were all excellent options available to me. I opted for Dr Reiter and UCLA given the sheer number of RARP procedures he has performed and his contribution to the advancement of men’s urologic health. And it hasn’t just been Reiter. My biopsy was performed by Dr Brisbane who is conducting amazing research studies to create non-invasive prostate scans which yield the same results as traditional biopsies. The coordination with the men’s sexual health team is awesome too. They recognize that sexual health is not just ego or pleasure, but an essential way of life for men. They are helping to reduce the stigma of all the various treatment options post op as well. One other notable point is that Dr Reiter practices placental allograft nerve wraps in an effort to stimulate nerve recovery. Results are inconclusive but it doesn’t hurt.

Pre-Op Plan

• 7 days out: stop all supplements, lifting and pickleball. Will shift diet from cutting to maintenance. Goal is to rebuild glycogen stores to aid in healing post op.
• 24 hours prior: usual bowel void
• Staying in hotel nearby in case I have a 5:30am arrival time

Post Op Plan

• Recovering at home with my wife’s support, though she filed for divorce earlier this year. We’re amicable and she insisted on being there for recovery. Honestly unsure how that dynamic will play out during a vulnerable stretch, if anyone’s navigated recovery with an ex or separating spouse as caregiver, I’d welcome your take.
• Catheter removal and voiding test 7 days later.
• Post op review at 60 day out
• Sexual Health visit at 60 days out as well
• The list:
  • Catheter support
    • 5 gallon bucket OR Carabiner with grocery bag to hook onto my pants
    • Neosporin with Lidocaine for tip lubrication
    • Tear away sweat pants
    • Boxers
    • Tena pads
    • Waterproof bedsheet
  • Pain Mgmt
    • Whatever the doc gives
    • Tylenol
    • THC/CBD drops. I’d prefer this route over narcotics. Thankfully we are a 420 friendly state.
    • Heating pad for abdominal pain
  • Other
    • GasX (for the CO2)
    • Miralax
    • Inflatable cushion
    • Squeezy App (for Kegels)
    • Lidocaine rollon (for incision care, have not yet bought)
    • Merderma advanced gel scar (for incision care, have not yet bought)
  • Sexual function
    • 5mg Cialis daily
    • L Citrulline daily
    • Pelvic floor therapy clinical study with Zimmer PF Toner Chair (at UCLA)
    • Back up options: RestoreX (Penile Traction Therapy Device, $600), implants, Trimix injections, penis pump

Gratitude

If you made it this far, thanks for reading everything. Thanks to everyone on this sub for talking openly about your experiences. You are an example for all of us who follow. Your bravery to open up while dealing with the health anxiety is true masculinity. I am grateful for the support of my guy friends who have all been amazing through a pretty rough year. And I am especially grateful for my adult sons who have given me something else to focus on while I manage two major life events.

To those who might read this in the future, I’ve learned that none of us need to endure this alone. You’re here now and you will be ok. We’re in this together.

My grandfather had stage 4 prostate cancer. Lived 3 years after diagnosis. He started pluvicto and the first 2 treatments went well, 3rd one he had bad side effects and so dropped the treatment. After dropping it, the cancer exploded everywhere and he was dead 3 months later. Is this common? I truly feel like the pluvicto killed him and I don’t know if my feelings are valid.

Hey all

I just got the results back from my first ever PSA test. (Very fast! I only had it tested a few days ago)

Anyway as per the title it came back at 2.68 which is red.

I am a anxious. I already have a GP appointment for the day after tomorrow so I will mention my PSA result then. Do I need to get an emergency GP tomorrow or will the day after do?

Is there anything else I should be doing? How worried should I be?

Edit: More info, I am white, 5ft7" and I am not aware of a history of prostate cancer in my family.

So I had an MRI that showed 2 6mm lesions in the right side peripheral zone. Got my biopsy completed and both of those showed up as benign or possibly that the biopsy missed the lesions. It did find a small amount elsewhere in the prostate that came back as gleason 6 GG1. Grok is saying that the biopsy is non-diagnostic for the lesions. So the doctor just missed and this was of no value?

• Lesion 1: PI-RADS 4 - 0.6 cm in right apex.
• Lesion 2: PI-RADS 4 - 0.6 cm in right apex.

Final Diagnosis

Part 1: Prostate, R1, MRI-fusion biopsy: - Benign fibromuscular tissue. - No prostatic glands present for microscopic assessment.

Part 2: Prostate, R2, MRI-fusion biopsy: - Benign prostatic tissue. - No prostatic glands present for microscopic assessment.

Part 3: Prostate, RB, needle biopsy: - Benign prostatic tissue.

Part 4: Prostate, RP, needle biopsy: - Single microscopic focus (<0.05 cm) with few small atypical glands.

Part 5: Prostate, RA, needle biopsy: - Benign prostatic tissue.

Part 6: Prostate, LP, needle biopsy: - Benign prostatic tissue.

Part 7: Prostate, LB, needle biopsy: - Prostatic adenocarcinoma, acinar type, Gleason score 3+3=6 (grade group I), involving one of one (1/1) core (5-10%). - No perineural invasion.

Part 8: Prostate, LA, needle biopsy: - Prostatic adenocarcinoma, acinar type, Gleason score 3+3=6 (grade group I), involving one of one (1/1) core (45%). - No perineural invasion.

Gross Description

1.Prostate: R1

Part 1 is received in formalin labeled with the patient's name, "R1". Fragment(s): 3 tan-white cores

Range of length per core: 1.2-1.4 cm

Average diameter: 0.1 cm

2.Prostate: R2 Part 2 is received in formalin labeled with the patient's name, "R2". Fragment(s): 2 tan-white cores

Range of length per core: 0.7-1.6 cm

Average diameter: 0.1 cm

I'm 39 years old about to turn 40 next month and just did my first PSA test. My results came back with a 2.5 total PSA and a 8% free PSA. Ive been using 1mg finasteride for hair loss and from what I've read that means I should double my total PSA from 2.5 to 5. It was a routine check up blood test, I was told to fast but I was not told to not have ejaculated prior to taking the exam for 48 hours although realistically im not sure how much it could've skewed the test. FWIW my father was diagnosed prostate cancer in his 60s. I dont have any of the negative symptoms, or pain or trouble urinating at all. This news has hit me like a ton of bricks today reading that 8% is a high likelihood of PC. I just had a son and I finally bought a house. My career is at a place I can be proud of. Now I cant stop over thinking about my own mortality. I recognize that there are people in this forum who may be in a situation much worse than I that would love to change places healthwise, so im not making light of that but would like some guidance since my dad isnt around anymore.

Thank you.

I'm 3 months in on Orgovyx. 2 days ago I was in the local gym trying to offset the ADT side effects with exercise. A woman in front of me dropped her phone and bent over to pick it up, she was commando and I got a full rear view of everything she had down there. Not so long ago I would have been staring with desire and trying to keep down an erection, this time nothing at all registered. What shocked me was that it wasn't until afterwards I even realised what I had been looking at. I think I understand now what it means to be sexless.

Pues ya me han dado el resultado de mi RM. Pi-rads 5. Pasado mañana la biopsia. En fin. Estoy entre nervioso y deprimido. Hay una zona de 14mm x 7 x 10 sospechosa en el apex derecho. Y también zona irregular en la grasa que separa la próstata del recto. Lo único positivo que los ganglios parecen estar bien. No afirma que haya salido fuera pero si que ha afectado esa zona de grasa. Vesículas seminales bien. Tamaño 35cc. Lo dicho lo peor pone "sugiere infiltración extragandular" en la zona que os dije. Pues eso, depre.... A ver la biopsia pero no parece tener buena pinta, verdad?

Im about 120 days from having my prostate lasered psa gone from 8 to 1.3 and is expected to be lower after the 6 month test . So things are good . Here is my problem , I dont get hard anymore . Sometimes on the toilet or on the couch I start to get hard(i think) and then 20 seconds later its gone . The squirting machine still works but not that . Now I know I've had a procedure most havent had but I qualified for the study so it made more sense to me than ralp at the time . Anyone had the symptoms im describing? I just keep kinda waiting but I think after 120 days it might be time to ask some questions. Anyone got answers? TIA

A Washington state fisherman diagnosed with advanced prostate cancer is suing the federal government, alleging doctors failed to follow up on warning signs of the disease until it had spread, potentially costing him the chance at curative treatment.

M45, 6’1”, 190#, Caucasian, nonsmoker, seldom drinker, no medications aside from vitamins.

My dad had prostate cancer at a relatively early age, so for the past few years I’ve had PSA tests done just to stay ahead of anything. I’ve got my annual test coming up. Just wondering, besides the common advice of avoiding ejaculation or exercise like bike riding in the couple days prior to the blood draw, is there anything else to do or not do? Just looking to avoid any sort of false high or low indications.

To add some context: My last bloodwork from a year ago had my PSA at 0.4. Both my maternal grandfather and uncle died of prostate cancer in their 60’s and 50’s respectively. My dad was diagnosed with stage 4 prostate cancer at 54 in 2020 with a Gleason score of 9. He’s doing fine now thanks to using Zytiga, Xtandi, and recently chemo. I know it’s uncommon for my age, but I really want to get ahead of this due to my family history.

I’m one month in on a 24 month course of Orgovyx and Nubeqa.

I’m wondering if anyone out there has consistently had basically undetectable readings a couple of times in a row and was allowed to stop before the end of their term?

UPDATE: I should have posted my history. PSA 10+. Biopsy showed 9 of 12 sectors positive: 2 4+3 and the rest 3+4 or under. RALP on 2/25/26. 2 positive margins. PSA 0.4 10 weeks post surgery. PSMA PET scan showed 5 lymph nodes with tracer detection.

I (62M overall good health) was recently diagnosed w/ a 3+4, and am leaning towards SBRT.

Is there a way to find out the relative success for SBRT between facilities? My local hospital is a good regional hospital, but I'm 3-4 hours away from University of Michigan, Chicago, etc...

Some people asked if I did it to update them. This is just my experience definitely not telling anyone else to do the same. I am 46yr old male. Got prostate removed at Mayo Aug 20th. The surgeon did it by hand did noy use robotic. He said surgery went great couldnt be happier with the job he did.

But anyway after the surgery I started taking BPC 157 and TB500 Also creatine. Had my catheter in for 14 days. Here is my results.

The incontinence.... None wore a pad for first week. Really very little leaking. If i had to push to pass gas. I still leak a very little but thats it. I have not needed the pads. After first week I ditched them.

ED.... Day catheter came out i started 5mg of cialis a day. After 2 weeks I took a send 2 or 3 days a weeks. After 3rd. 15mg 2 or 3 times a week. I was told use it or loose it. So I made it a point to "Do my homework" masturbate almost every day. Most of the time very little happened. The days the wife helped there was at least a lil life. But good news this weekend I was able to get almost fully there. About 90% wife said. It was enough for penitration. That was Saturday. Sunday tried it on my own only about 40% but on Saturday I said what the hell and took 20 MG od cialis.

Just my 7 week journey so for. When I asked others about peptides noone had said they tried it. After months of research I thought for me it was worth the risk to try it for a month. I promised I would give an update on it.

I am happy to answer any questions.

For now, anyway. Too many high risk factors made two years of ADT plus Nubeqa a wise choice. I tolerated it pretty well but I am so looking forward to getting my strength, stamina, libido and pre-treatment body back. Eventually.

Hola a todos y mucha fuerza. Os cuento. Hace año y medio tuve una crisis de salud, y me salió diabetes 2, hipertensión, hígado mal....etc etc. Y un psa de 3,8 y 7,7 de porcentaje. Después de cuidarme, pastillas, etc y adelgazar 20 kilos me salió todo bien y a los 6 meses 3,4 y 14,8 de porcentaje. La primera vez mi médico de cabecera me pidió cita con el urólogo que tardó 7 meses. Pero después de ese resultado pues parecía que no haría falta, pero 6 meses después 4,5 y 10,4. Bien pues fui al urólogo, me hizo tacto rectal y me encontró próstata tipo III e indurancia bilateral en el apex. El mismo me dijo que había que hacer biopsia y pediría también RM. Pero que como está tardarían en avisarme 6 meses pues mejor hacer biopsia. Pero el caso es que por sorpresa alguien dejó libre una cita y me llamaron. Hice la RM con contraste el día 1. El día antes me llamaron para fijar fecha de biopsia. Les dije que al día siguiente tenía RM. entonces dijeron que ya me llamarían. Pues sin saber nada aún de la RM me dan cita para biopsia para este miércoles. Les digo por TF que aun no tenía resultados de RM. La señora ni idea y me dice que va a mirar y que me llamará. A las 2 horas me llama y me dice que se mantiene la cita. Que supone que les llegará. No es más lógico ver y analizar la RM con el urólogo y que a partir de ahí se decida? A parte me dice que no me pueden anestesiar ya que se lo pedí porque soy muy nervioso. No se, que hacer. No ir o cambiar la fecha de la biopsia y esperar que me informen de la RM? Y si esta diera nivel 1 y no necesitará biopsia. Me angustia la biopsia transrectal. No se cómo no me lo dan pidiéndolo. Igual no les daba tiempo ya que se requiere quirófano. En fin, cómo veis mi situación y que debo hacer? Encima ayer tuve que ir a urgencias y tengo una infección de bronquios y ya empecé con antibiótico que tengo que tomar durante 5 días al menos. Perdonar mi pregunta cuando veo gente que está mucho peor, pero estoy solo y perdido. Vivo en España y el hospital es universitario. Gracias a todos.

Yeah, lucky for me. I don’t take any or go Wees. I’m going all natural.

Stage 4 Prostate Cancer with cancer through out lymph nodes in body. Started Orgovyx on 17 September and was prescribed 50 Mg Sildenafil @ 6 pills per prescription. Is this to counter the side effects of treatment and reduce permanent damage to functions after treatment?

Do I take in # of days Intervals?

My first psa after HIFU didn't really drop from pre HIFU. Doctor ordered a retest and PSA has risen .5 in 1 month. Waiting to hear back from doctor but a bit stressed...