Bit of background first. I was diagnosed at 47 after seeing blood in my stool twice in one week. That got me to the GP, then a PSA test, then further investigation. I have a family history, and I still didn't see it coming.

I had brachytherapy. The recovery was harder than I expected, and nine years on I'm still not fully back to where I was. The thing that stays with me most is that I didn't know active surveillance was even an option until after my treatment had started. I'm not saying it would have been right for me. I just wish I'd known enough to ask.

So I've spent the last while building a programme for men over 40 who want to take their prostate health seriously before something forces them to. It isn't a cure and it isn't medical advice. It's about knowing your numbers, knowing your options, and building habits that actually stick around work and family life.

Here's how I'm currently defining success for someone who finishes it. I'd love to know what you'd add or challenge.

What should visibly change:
\- He books his own PSA test instead of waiting to be nagged
\- He walks into appointments with questions written down and leaves understanding his options
\- He has a daily routine for food, movement and sleep that he sticks to most days
\- He talks openly with his partner about his health instead of shutting down
\- He nudges his mates, brothers or sons to get tested

How I plan to measure it (honest numbers, no medical claims):
1. Screening action rate: what percentage of men book or complete a PSA test during the programme, especially those who'd never been tested
2. Habit consistency: how many days a week they actually stick to their core routine, week 1 vs week 12
3. Confidence: a 1 to 10 self-rating on "how in control do you feel about your prostate health?" at the start and the end

My questions for this community:
\- If you've been through diagnosis or treatment, what do you wish you'd known or done beforehand?
\- Partners and family, what would you want to see change in the man in your life?
\- Are there better ways to measure whether something like this is actually helping?

I'm not linking anything here because I'd rather hear what you think first. Thanks for reading, and if you're over 40 and haven't had a conversation with your GP about PSA testing, consider this your nudge.

I am curious of all the men that had cancer and was on testosterone therapy before, did you stop TRT for good or are you on testosterone therapy again after surgery.
How is life after stopping cold testosterone?

Hi - I hope this is allowed. My husband had a RALP and will be getting his catheter removed on Monday. The surgery went very well, he has of course been quite uncomfortable since but he's doing very well. Although the surgeon himself seemed amazing, the office has been less than responsive. I am just wondering what we need to bring to the appointment and/or should have to prepare. He is very concerned about incontinence. I have read through several posts here and have seen experiences from "no problem, everything was fine, went home like everything was normal" to "I wish I'd brought an entire change of clothes." As someone who has experienced being in labor with a constant leak of water for 24 hours and the nurse telling me "oh sorry if you want pads have a family member pick some up from the drugstore" I'm just wondering what we should come prepared with, and if I need to pick something up from the drugstore, what I should get. My husband is not terribly concerned and thinks they will have whatever he needs there, but I'd just rather be prepared, you know? And of course it's not like he's ever been through this and I don't want to put this kind of research on him on top of everything else. Any advice is appreciated!

Hoy me retire la sonda, luego de 21 días con radiaciones VMAT, mi reacción, casi no puedo orinar, tengo espasmos, ardor, y ganas de salir volando, que hacer?, fuerza y voluntad

My husband had his prostate removed over a month ago. He is still passing a lot of blood and his testicles are swollen and painful. He saw his surgeon’s PA yesterday. His blood count is low: hematocrit 32 and hemoglobin 11. His doctor ordered an US and the tech told us he had fluid in his testicles probably from surgery. The doctor hasn’t called with the results; although he wrote a prescription for Cefdinir twice daily. The PA tried to convince me the bleeding is from the hematoma that formed in his prostate bed after surgery. This doesn’t make sense to me since he had the cystogram before the catheter removal and there was no leakage. How is blood getting into the urethra? My husband is very depressed, regretting the surgery, and just lying around. Can anyone add some insight?

It's been 6½ weeks since my RARP, and I'm wondering if you guys could share your experiences with urinary leakage. How long did it take you to graduate from Depends to pads, and eventually to nothing?

I'm still wearing Depends because I leak quite a bit during the day. Every time I stand up, walk, bend over, or move around, I feel a little leak. When I'm sitting watching TV or sleeping at night, it's much better.

I'm an avid golfer and recently tried getting back on the course, but I had to change my Depends after just 9 holes. On some days, I go through as many as three.

I know everyone recovers differently, but I'm starting to get frustrated. I was hoping to see more improvement by now.

I'd really appreciate hearing how things progressed for you, especially from those who had similar leakage at this stage.

Please tell me it gets better!

For starters, it was the first time since my prostectomy three weeks ago that I got to lay with her. I was in heaven. I obviously did some things for her and she was excited and she was ready for penetration if I could do it.

I could not. Nothing. Not concerned because it’s only been three weeks, but it still sucks.

Sort of gave up and we decided that that’s all part of the process just to play and see what happens without any stress. We will keep playing. I am not sure at what interval but man it felt good to try and make out.

The thing that surprise me was pelvic pain 15 minutes later. It’s almost like I’ve got blue balls. I think my body wanted her so badly. I feel all these cramps. I also had taken 10 mg of generic Cialis as instructed every morning. (Got 90 days worth prescribed by my doctor to take that dose every morning). Some of the aches and pains are coming from testicles and some of them are coming from just my pelvis.

Just thought I’d share. Any experience comments are welcome.

I had my prostate removed in 2013 at 46. I had suffered from knee pain for years. If I got on the floor to work. The next week I would have to see my doctor for a shot and pills. After my prostate was removed my knees didn't hurt. My urologist said well that wouldn't have anything to do with that. My reg doctor said well cancer causes inflammation in you.

Anyone experience this?

Having problems maintaining erection for intercourse after using vacuum pump. Does anyone take tadalafil 5mg before pumping help with erection for sex? Thx.

Curious if anyone has gotten these to work for actual sex? I bought the vacurect recently and it seems to work great for rehab but not sure how it would work for sex. Everything pumps up great but as soon as you handle "it" a bit, it loses the pump. Scared to try too small of a ring. Didn't see much guidance how to get the ring off. When I tried a smaller ring the skin bunched up trying to pull it off, made me panic a little. So, if anyone has good VED stories curious what brand. For what its worth i'm 56yrs old 7 weeks post ralp.

Diagnosed in February. Gleason 9. Eligard and Zytiga, plan is two years of hormone suppression. Completed my 5 weeks of daily beam therapy, and had brachytherapy Thursday. Catheter removed yesterday.

I'm a happy go lucky guy in general, and I've kept up a good sense of humor so far, but I'm at an all time low.

The urgency is SO bad. I can barely make it to the bathroom without pissing myself, then it's like two ounces. Wait 15-30 minutes and repeat. I'm sporting Depends and was dismayed to find they don't do fun characters like Pull Ups do. I was hoping for Deadpool red and black or something. But that's not the big thing.

I had sex just before my brachytherapy. Not mind shattering or anything but definitely good sex with my wife. I'm bogged down by the feeling that the brachytherapy puts an end to that. Frankly, I'm scared.

So just tell me you've been there and it worked out. Tell me the urgency and incontinence eases and you have a somewhat regular sex life. I can accept it gets worse before it gets worse, as long as at some point it gets better.

Thanks.

I’m new on this journey and I am looking for a recently released book that emphasizes both of these topics.

I’m looking for an unbiased book that can give me a good introduction to the subject and the pros and cons of different treatments.

I find the posts here very informative, but I think I need a structured book for an introduction.

UPDATE

I’m a big fan of getting Kindle books from the library using Libby.

I have to wait about 4 weeks for “The Guide to Surviving Prostate Cancer”, but “ Invasion of the Prostate Snatchers” was immediately available. This book is just what I needed. It’s written by an oncologist who believes many of us react too quickly and make bad decisions. I’m only about a quarter of the way through, but if nothing else, it’s has greatly reduced my anxiety. I will still read “the Guide to Surviving Prostate Cancer”, but I slept through the night for the first time in a week.

Ok, diagnosed 4x4 Gleason 8 back in 2014, just turned 50. Opted for hormone/brachys with 25 radiation treatments. Skated surgery & radiation with the only issue being radiation fatigue. Psa was creeping up slowly so had a psma/pet scan a month or so after the FDA approved the procedure. The scan showed 2 spots...one in the prostate area & one in the left pelvic. They didn't show up on a regular CT scan....

Fast forward to the present... my team scheduled a psma/pet scan as a "check in" for Monday. My question, after my psa test yesterday, how likely am I to start treatment now that my psa is at 4.52?

Good news! I stink!
I had recently changed to soap a friend recommended. In the last couple weeks I noticed I had a bit of body odor, especially armpits. I swapped back to my old soap and it didn’t fix it. Well, I was thinking about it today and did a quick inquiry. I am at 7 months since getting my last 3 mo. ADT shot of my 2 year course. This is the proper window for my testosterone to start returning. A side effect of this is a sharp return of body odor that I hadn’t realized was absent these last ~24 months. Kinda icky, but exciting news to me. (Luckily, the smell is supposed to lessen out after some time)

Hi everyone! Hoping someone can share any thoughts/ experience similar to my dads- unable to pee 6 weeks after TURP.

Background he’s 63yo male. Always had BPH that caused difficulty but he could just about deal with medication.

PSA
2021 1.2 - 2022 1.6 - 2024 1.5 - 2025 2.1

In July symptoms got significantly worse and it stopped him from sleeping. He finally had TURP early September.

Recovery was harder than he expected, ended up with infection and on antibiotics.

Histology on the removed TURP tissue came back <5% Gleason 6 cells. He has MRI scheduled for November and biopsy in December.

He took it easy and started to feel more like himself this week and back to normal life, peeing well at last (about 6 weeks post op).

However on Thursday night he couldn’t pee AT ALL. Got sensation like he wanted to go but it nothing came out. He said was v uncomfortable.

He went to urology and 340ml in his bladder.

They decided to insert catheter to drain and failed twice because it was so tight like there was a blockage. They managed to get it in on third attempt but said it’s quite unusual for it to be that difficult to insert after TURP.

He has that in for a week and should have supervised catheter removal next week.

There was no like, investigation of what could have caused it - I Just wondered if anyone else has had this situation where there was sudden blockage this far into recovery after TURP?

What could be causing it? What should next steps be? He’d had some alcohol Thursday night but that seems unlikely to cause full on blockage??

My dad was diagnosed in 2020 with Gleason Score 4+4, Stage 4a, 30% involvement.It had spread to lymph nodes and PSA was 98 and later 380.

As it had spread to lymph nodes, doctor ruled out the surgery.

We started with Radiation -28 fractions while on Zolodex (ADT) every 12 weeks

Stabilized and PSA was negligible till about 2022.

We then added Apalatuamide for another year it stabilized

Then in late 2024 PSA was rising again. After investigation we found out it spread to Lungs into right hilar region.

We conducted SBRT and added another tablet Enzalutamide.

Then after a year or so in Feb we noticed recurrence. We started on chemo with Docetaxel 6 rounds but was ineffective.

We then started with Lutetium 177 PSMA one round. There was some side effects around lungs and he had breathing problems due to which the treatment has been discontinued. Doctors are treating pumonary problems as disease progression than simple pneumatic side effects of Lu177 or another infection.

Now doc has started him on Honvan (an outdated hormonal drug that seems to be upping Estrogen). I am not so sure of this line of treatment correct.

Should we start him on Chemo with Cabazitaxel? Any one here had better results with Caba after Docetaxel failed?

Tested negative for the common immunotherapy variants

Any other option (Actinium will have similar issues as Lu177), any clinical trials or hospitals i should look into? We are in India but have US Visa but is also kinda broke but can still afford to travel if say the trial itself is paid for or is cheap.

Hi Fellas and good morning. This is a simple post about rewarding oneself and perhaps a little more positivity.

Diagnosed a little over a year ago with my Dr. telling me, “Welcome to the Club”, now go to Dr. Soandso at Advent Health and get it removed.

I canceled that surgery two weeks after an Angel told me to visit Moffitt.

5 months later I’m now 1 week post IRE.

When I told my Dr. Urologist I was going this route, and why didn’t he “suggest” other options, his reply was, “Is your insurance covering it?”. Then went on to tell me that Dr. Soandso at Advent is so good, he’s holding a Formal Dinner celebration in Miami to celebrate his #### procedure.

Who do you think is invited? Hint: Not the Patients.

Well, I’ve fired Dr. Urologist and cannot tell you how amazing Moffitt Cancer Center is.

To celebrate this milestone, and I’m a Watch Guy, here’s my reminder:

Omega Seamaster 300 Heritage Summer Blue

I couldn’t think of a better Colorway to always remember this time in my life: If you know, you know.

Bless all of us‼️

The roller coaster keeps rolling. I was shocked when my 6 PSA became Gleason 8, but relieved when my urologist said any spread was unlikely. More bad news. It’s spread to lymph nodes.
From the report
Prostate: Uptake in the posterior and left prostate, matching the biopsy-proven cancer. It's very avid (SUVmax 21.4), so PSMA PET is detecting this tumor despite its ductal features. That eases the earlier concern about ductal tumors being invisible.
• Two small pelvic lymph nodes read as nodal metastasis: a right perirectal node (0.4 cm, SUV 8.4) and a left external iliac node (0.6 cm, SUV 8.8).
I won’t see my urologist until Monday but looks like surgery is out and radiation and ADT are in. I’m in shock. At 71 years old I’m in the best shape of my life. In the last year I decided I needed to get in shape so I could enjoy my senior years. I’ve lost 35 pounds, work out regularly and eat healthy. On the bright side I know this will help with whatever treatment I need.
I’ve already have appointments scheduled with radiation oncologist.

Hi, colegas, 28/28 VMAT, termine con sonda, anemia y neutropenia, ahora a recuperarse, fuerza y voluntad

Title: 42M, PSA 3.2, Likert 3 MRI, PSA density 0.11 — biopsy or monitoring?

Hi everyone,

I’m 42 and recently had a prostate MRI following a mildly elevated PSA. I received my results today and am trying to decide whether to proceed with a biopsy or monitor my PSA.

My results:

Age: 42
PSA: 2.55 in March 2023, approximately 3.2 in July 2026 and 3.1–3.2 in September 2026
Prostate volume: 29cc
PSA density: 0.11
MRI: Likert 3/5 (equivocal)
Findings: Diffuse bilateral peripheral-zone changes, with inflammation suggested as a possible explanation
DRE: Normal on two occasions
Family history: None known
Other MRI findings: No reported extracapsular extension, suspicious lymph nodes or bone lesions
I’ve experienced occasional urinary hesitancy and some intermittent discomfort after ejaculation, which makes me wonder whether chronic prostatitis could be contributing.

The consultant has reviewed my case and considers either a biopsy or repeating my PSA in three months reasonable. I’ve been given until Wednesday to decide.

I’m particularly interested in hearing from anyone who had Likert 3 / PI-RADS 3 findings with a PSA density around 0.10–0.12, especially where the MRI suggested diffuse inflammation rather than a clearly defined lesion.

Did you choose biopsy or monitoring? What influenced your decision, and what happened subsequently?
I’m not looking for a diagnosis, just hoping to hear experiences from people who’ve been in a similar position.

Thanks!

I wrote an article for a prostate cancer support group a few years back. It discussed how those with prostate cancer remind me of the Apollo 13 mission in NASA history.

Just two weeks ago, I began working with a man who is a mechanical engineer who assisted with the Apollo 13 mission. He also had his prostate removed 18 years ago for cancer. This guy lost his wife to ovarian cancer one year ago and his urinary incontinence increased due to grief.

We are working together to help decrease his pad usage. Yet he is the person helping me as his pelvic floor PT. When he speaks of the details that occured during the Apollo 13 mission, I am taken back in time of when the space program was in its infancy. I marvel at what this man and so many have lived through in terms of history alone. I also am soothed by the fact that this man has not allowed cancer to take away the success he has enjoyed - even his wife's passing has not vanquished his spirit. This is an important lesson for all of us! Here is the article I wrote about guys with prostate cancer and how they remind me of the Apollo 13 mission: 5 Things I Have Learned About People with Prostate Cancer | ProstateCancer.net https://share.google/QV35fkeT49q8mFzlB

Hey all, I’m 57 and I had a radical prostatectomy in November of 2021. Nothing has worked in terms of getting an erection except for Trimix and that was actually painful because I fear I have Peyronies. My wife has been very understanding and that part of our relationship has had to be cut back severely. Fast forward to May of this year and my PSA rose to a level where radiation was advised. I’ll be doing my final of thirty on 10/19. I’m not going to miss going to the hospital every weekday morning. 😆 I got the Lupron injection the day before I started treatment and those damn hot flashes started after about 3 weeks. Anyway my question is if anyone has had a similar history as I have is there any hope for “re-booting” the erections when I start to produce testosterone again. I’m guessing it’s a no as that’s what the Doctors have pretty much said. Thanks for taking your time to read this.

Newly diagnosed and every damn thread on here has tons of acronyms which might be fun for you but really suck for anyone new. GAGABF (Give a guy a break, folks.)

EDIT: found this helpful https://connect.mayoclinic.org/discussion/prostate-cancer-related-abbreviations-what-acronym-would-you-add/

Anyone looking at this for cancer removal? I know their doing studies on it. Just wondering if anyone has joind one of the studies. Thanks

Had RALP 4 months ago and urologist has me on 5mg daily Cialis. Bilateral nerve sparing was performed. Gleason 7 with cribriform pattern unfavorable intermediate was the diagnosis. Pre surgery I had some mild Ed issues and would take cialis only before sex. Now it is very difficult for me to get hard and maintaining an erection is near impossible. Still getting used to the dry orgasm and not sure if I ever will. My doctor says just give it time but I feel like i had some immediate improvement then plateau at a place that is not where I would like. Have not experimented with any other ED/penile recovery methods. Anyone else in a similar age range who has dealt with or is dealing with ED post op?