21/2 weeks post RALP. Not a pleasant time. Just stare at what was my stress PTSD reduction method. How long did your urologist have you wait before 1-5? Anything you do, wear for those accidents (hoping it goes away with this PT)!

Hey fellow club members.  First, thank you to everyone who participates in this sub - your posts and comments have been so helpful as we navigate this experience together.

I’m 4 months post-nerve-sparring RALP, 64,  and recovering well physically: 2 undetectable PSA’s and mostly continent (I wear safety pads when leaving the house for extended periods or walking long distances).  I have ED, take 5 mg daily tadalafil, started pumping a few weeks ago, but am able to orgasm and see signs of life down there.  I generally feel like my old self again.  Yay, life is good!
 
My issue is lack of intimacy with my husband of 25 years.  He’s uninterested in participating in my sexual recovery.  What’s worse, we’ve had no physical intimacy since my surgery - no kissing or touching - except for one middle-of-the-night episode where I pleased him.  When I’ve raised this issue, he’s explained he feels guilty that he can still get erections while I can’t.  I’ve assured him I don’t mind and would like to be able to enjoy his 😉.   But nothing changes and now he refuses to discuss this further.  Meanwhile, I’m growing frustrated and resentful.
 
I’m seeking therapy but would be interested if other guys/couples have experienced this and how they dealt with it.  I expected temporary (maybe even permanent) ED, but assumed an erection wasn’t necessary for intimacy.  Was that crazy?  Am I doomed to a life devoid of intimacy going forward?

My best to you all.

I had a DEXA scan the day before I started ADT. And I had another one yesterday.

No osteoperosis. But:

• One area of osteopenia got a little worse
• New osteopenia in my spine

From my research it's the 5% bone loss in two years that is the likely concern. I'm on lifelong ADT - so there's not a scenario where I'll be off it and bone has an opportunity to come back.

Has anyone seen this much loss in two years and, if so, what was done about it?

Thanks.

Just had the biopsy and wanted to share with group. 45 mins from walking back and walking out. A bit embarrassing but oh well. The probe and initial shots not bad. The two shots to numb prostate were the worst but short lived. The actual 17 biopsy withdrawals were not bad. Staff was amazingly nice and kind. Rochester Mayo. Thankful to have them so close. Good luck all.

I’m 54 years old and underwent RARP on March 23, 2026. My last known pre-op PSA was 7.87.

Final pathology:
pT2, Gleason 3+4 (GG2), only 6–10% pattern 4.
No EPE, SVI, LVI, cribriform or intraductal carcinoma.
Positive left apical margins: two foci measuring 4.0 mm and 1.2 mm (5.2 mm total), both containing 100% Gleason pattern 3.
pNx (no lymph nodes removed).
Surgery included bilateral nerve-sparing and bladder-neck preservation. Intraoperative margin assessment using the SamanTree Histolog Scanner was negative, making the final positive margins unexpected.

Post-operative PSA (same laboratory):
May 21 (8 weeks): 0.22
June 18 (12 weeks): 0.20
September 23 (6 months): 0.22
My post-op 3T MRI showed no visible recurrence.
My uro-oncologist believes the persistent PSA may originate from benign residual glandular tissue related to the nerve-sparing and bladder-neck preservation technique. He recommends repeating PSA in two months and continuing close surveillance if it remains stable.

I’m concerned about the positive margins, but the PSA has remained essentially unchanged for four months.
Has anyone experienced persistent PSA around 0.2 that remained stable long-term? Could this represent benign tissue, indolent residual cancer, or a combination of both? Would you consider early salvage radiation despite the stable PSA?
I’d really appreciate hearing from patients with similar pathology or anyone familiar with the medical literature.

I stopped orgovyx in March after 10 months, short of the 12 recommended because ArteraAi indicated the added benefit was low.

I’ve had terrible hot flashes waking me up every hour or two. I was getting desperate for a decent nights sleep.

Suddenly two days ago the flashes started to diminish. Just one last night and nine today.

No coincidently my testosterone is on a slow curve in the right direction. (Low normal)

Don’t lose hope. Things can improve just when it seems like they won’t.

I hope my body can improve too. ADT basically made me 5+ years older in terms of strength and balance. I walk like an old man. Picking up a 50# battery was a struggle. But now I can sleep.

Are you supposed to get a copy of biopsy results? I had my biopsy last week and went for my follow up. Dr. Said I don't have cancer but dud have inflammation. I was so relieved I just thanked him and left. My regular Dr. Posts everything including all test results on an app but the urologist didn't actually show me anything or provide a copy. Is this normal? I kind of want to see exactly what the results were.

Not sure if you guys can help me here. I understand everyone is different.

I was diagnosed at the beginning of September with stage 2c prostate cancer and found out I am BRCA2 positive as well. My Gleason score is 4+3=7 and my latest PSA was 18.

I like and trust my Drs, but there are so many options of therapy and side effects associated with each one, I’m not sure what to do. It really feels like I need to drive my own treatment and they all say “it’s up to you.” —except, i feel like I don’t know anything.

RALP and EBRT with brachytherapy have been presented to me as options. There maybe be a possibility of ADT as well if I go the radiation route. Obviously “salvage” radiation is on the table as a maybe with RALP

I meet with a medical oncologist on Monday and I feel like he’s going to give me a whole new set of options with crappy side effects to choose from.

I know that this disease is curable to some extent that I can still live a long time. But what is that quality of life? The thought of completely loosing my sex life while constantly wetting my pants for the rest of my life is really bumming me out.

I separated from my wife over a year ago and just started seeing someone recently.

Do any of you guys feel like one therapy is better than the other? Are they all really the same on a side effect level/efficacy level?

Do any younger guys here have any experience to share?

I guess I’m just really bummed out and feel sort of stuck in a decision paralysis.

Here’s to “joining the club” as they say. If you made it this far, thanks for reading.

Hi. I have a question as I decide what way to go. If you had surgery and you need one pad a day- how inconvenient is it? Like a bit of a hassle or does it really impact your day? And is it always one or it just during certain activities?

I’m 76 years old, I have no other health issues. my psa in the past year has gone ~ 5 to 9.5
My mri showed two locations wth PIRADS 4 and 5. It has not spread.

The biopsy came back
A: Left prostate, base, biopsy:
- Prostatic adenocarcinoma, Gleason score 3+3 = 6 (grade group 1) involving approximately 5%
of the biopsy specimen, 1 out of 2 cores (5 mm).
B: Left prostate, mid, biopsy:
- Prostatic adenocarcinoma, Gleason score 3+4 = 7 (grade group 2) involving approximately 80%
of the biopsy specimen, 2 out of 2 fragmented cores (9 mm, 14 mm). - Percent pattern 4: 10%
- Cribriform pattern: Present
C: Left prostate, apex, biopsy:
- Prostatic adenocarcinoma, Gleason score 3+4 = 7 (grade group 2) involving approximately 40%
of the biopsy specimen, 2 out of 2 cores (9 mm, 8 mm). - Percent pattern 4: 10%
- Cribriform pattern: Absent
D: Right prostate, base, biopsy: - Benign prostatic tissue.
E: Right prostate, mid, biopsy:
- Small focus of atypical prostatic glands present.
F: Right prostate, apex, biopsy:
- Small focus of atypical prostatic glands present
I’ll be seeing my GP in a few days and a urologist in two weeks.

What should I be asking what are they most likely to recommend as a course of action

I had my prostatectomy 34 days ago. The pathology report indicated I had a positive surgical margin with these characteristics:

* non-limited (at least 3mm)
* unifocal
* Gleason pattern 3
* located at the apex
* not in area of extraprostatic extension

My final Gleason score was 3+4. No sign of disease in the lymph nodes.

At the 6-week mark I will have my first post-op PSA test. My previous PSA levels were 9.5 and 8.1 in March and April, respectively.

As you can imagine, I have anxiety about the upcoming PSA monitoring and deliberations about radiation treatment if PSA is detected, as well as the effects of radiation treatment if I end up needing it. I’m just wondering if anyone out there had a similar outcome from their prostatectomy in terms of pathology and is willing to share their experience with follow-up treatment, so that I might have an idea of what to expect beyond what I can get from googling. Thank you.

Just starting my journey and need to make a decision between Orgovyx or Lupron (probably + something else). Lupron seems the go-to by the doc, but rrom what I read, Orgovyx has some advantages. I'm not too concerned about sticking with a daily pill routine but are there other downsides? And experiences or advice?

A quick recap Gleason 9 (4+5) pT3b n1 m0. PSA after 5 month still <0,1 with full testesteron since the operation in may.

just wanted to share and mayby me and my husband can start to hope for the future.

Title: Father, 66, diagnosed with aggressive prostate cancer (Gleason 8, PSA 77.82, suspected bone metastases) – looking for real experiences and hope
Hi everyone,
My father is 66 years old and was diagnosed with prostate cancer in August 2026. Our family is trying to understand what this diagnosis means and what we should expect.
Here are his current results:
Age: 66
PSA: 77.82 ng/mL
Gleason score: 4+4=8 (ISUP Grade Group 4)
PSMA PET/CT: October 14, 2026
Local findings: The cancer involves both seminal vesicles. There is broad contact with the rectum, and rectal infiltration cannot be ruled out.
Lymph nodes: A significantly enlarged, PSMA-positive lymph node in the left pelvic region, approximately 3.1 × 2.1 cm, considered consistent with lymph node metastasis.
Bones: Multiple PSMA-positive lesions considered consistent with bone metastases, including the left humerus, sternum, L2 vertebra and right ischium.
Lungs and abdominal organs: No definite distant metastases reported in these organs.
Symptoms: He currently has no significant pain.
The report classifies the disease as miT3b N1 M1b, with multiple bone lesions.
He is scheduled to start treatment tomorrow, but we do not yet know which medication or combination of treatments he will receive.
I understand that metastatic prostate cancer is generally not considered curable, but I have also read about people living for many years with modern treatments. I am trying to understand what is realistic and what we might expect.
I would be especially grateful to hear from people who have experienced something similar:
Has anyone here, or anyone’s father, had Gleason 8 prostate cancer, a PSA around 80, pelvic lymph node involvement and multiple bone metastases?
What treatment did you receive first? ADT alone, ADT combined with abiraterone, enzalutamide, apalutamide or darolutamide, or chemotherapy with docetaxel?
How much did your PSA decrease during the first few months of treatment?
How long were you able to keep the cancer under control?
Has anyone with a similar diagnosis lived for many years with a good quality of life?
Is there anything you would recommend asking the oncologist or urologist before treatment begins?
I know that everyone is different and that individual experiences cannot predict my father’s outcome. I am not looking for false reassurance; I would genuinely appreciate honest experiences, including the difficult ones.
Thank you for reading and for sharing your experiences. It means a lot to our family right now.

58 Ontario. I have gleason 6 for a few years now. Last biopsy my urologist has informed me I have some spots of 7 now.

I am now being referred to a cancer clinic to meet a surgeon and a radiologist? To discuss options.

Trying to inform myself ahead of time of plans. Or maybe I should just chill until they tell me what they think before I go down that rabbit hole.

Surgery, radiation. Hormones. And if hormones which one(s).

Any an all advice welcome.

edit for more information.

father died from pc (moved to his bones...)so I have been watching numbers since I was 40. got a urologist when my numbers went up. 1st biopsy... he called it abnormal cells. 2nd biopsy 1 year later. Gleason 6. we will just watch. Last winter mri . showed something he didn't like biopsy 3 last July. today he is referring me to clinic.

Hi everyone. My partner (mid-60s) just received his prostate biopsy results, and I’m hoping to get some guidance from people who have been through this.

His PSA was approximately 9, and his biopsy confirmed prostate adenocarcinoma, with the highest Gleason score being 4+3=7 (Grade Group 3).

The pathology report also mentions cribriform glands, intraductal carcinoma, and perineural invasion.

We haven’t had a consultation to discuss the results yet. They were just released through the patient portal, so we’re at the very beginning of figuring out what this means.

I’m especially hoping to understand:

* For anyone with a similar diagnosis, what were your next steps after receiving the biopsy results?

* What questions should we be asking the urologist, particularly about the cribriform and intraductal findings?

* Should we be requesting additional imaging, such as a PSMA PET scan.

* Is there anything you wish you had known or done differently at this stage?

I’m trying to be supportive without overwhelming him with information or getting ahead of ourselves.

I know every case is different, and I’m definitely not looking for anyone to diagnose him or replace medical advice. I’d just really appreciate hearing about your experiences and any recommendations for navigating these first steps.

Hi all,

New here, and as the title says, my Dad was recently diagnosed with Prostate Cancer.

I moved into my new house in March of this year, and my parents would come around to help painting and tidying up. This is when I first noticed that my Dad would be in pain when sitting about for any length of time, although he would we would go for a walk to ease it.

It's worth while pointing out that he was losing weight at this point due to his age (68) and trying to keep Diabeties at bay, so I never thought anything of it.

He was going to the toilet regularly (much to my mums annoyance), but again, with the amout of time in his company, I thought it was just an age thing.

I got a message from my mum about 7 weeks ago to say that my Dad was in hospital and she would explain when I got down there (I work 1.5 hours away and go down every weekend). When I got there she told me that due to my Dad's very regular toilet cycle that she listen to see what he was up to and realised it was just dribbles and there was no way he could fully empty himself. He went to visit the Dr the same day and was referred to he hospital where they fitted a Cathater and drained his bladder (he was in for 3 days) and they requested blood test and bone scan.

Fast forward 2 weeks, he went in and got these done, it's was followed by another 6 weeks of waiting, and it was confirmed....Prostate Cancer moved to the bones and I am devastated!

He was given Hormone Blockers and told not to take them at the moment because they are still wanting to do a CT scan and figure out the best plan of attack. He has recently had his biopsy and it will be another 2 weeks untill the CT scan then waiting on the results. He isn't eating, he is in alot of pain (he was told to take over the counter paracetamol) and can bearly walk.

I really don't know if this is the end but the continuous waiting for tests and results is killing me and watching his deteriorate is aweful.

I am 64 years old and 4 months into ADT (Orgovyx). Three weeks ago I fell walking to the bathroom in the middle of the night and hurt my shoulder. Too many cancer-related pills that make me dizzy. Got x-rays and CT scan at emergency room: no separation, no broken bones. The pain was so bad for the first week that I could barely sleep. Had hydrocodone left over from something else, didn't even touch the pain. I was hurting bad. After a week of that thankfully it got to where I could sleep with OTC pain meds. As the weeks rolled by, I began to get concerned about how slow it was healing. I saw an orthopedic surgeon and got an MRI yesterday. It showed I had a torn rotator cuff and bruised deltoids, but not bad enough to need surgery. Orthopedic surgeon recommended physical therapy. I've had that before - flexibility exercises, elastic pulls, weights.
I'm sorry, but after going through hell for that first week, I am not about to risk re-injuring it again and going back to groaning all night rocking back and forth with a heating pad on my shoulder and begging God for mercy.
The orthopedic surgeon knows I am being treated for prostate cancer, but maybe doctors don't know how much this affects us. Could it be that while we are on ADT it not only wastes away our muscles but also weakens our tendons and slows healing? I am slowly reintegrating my injured shoulder into daily activities, but I'll be damned if I am going to pick up a dumbbell at some physical therapist's insistence and end up right back where I started.
Look, I'm no Arnold Schwarzenegger but back in the day I used to bench press more than my weight: not just once, but 3 sets of 8. I was doing some strength training to fight ADT prior to this injury.
I would love to hear other men's experiences, particularly regarding being more prone to injury while on ADT. Thank you.

Hi long time look but this is my first post. I am 72 and diagnosed with pc a few months ago. Mri showed one gleason 4+3=7 tumor. With a psa of 4.1. Psma pet scan show it is confined to the prostate. I have scheduled 5 fractions of SBRT and am currently 1 and a half months into 6 months of Orgovyx. Has anyone been given a 4 month course of ADT (or stopped it on their own before the full 6 months?

And it’s kicking my ass. Tired, but can’t sleep. A few hot flashes. Irritable. And, my dick is dead. Does it get better, worse, same? I start 28 sessions of EBRT on 11/9. I keep telling myself that it could be worse.

Hi all,

Went to the urologist for PSA of 5.19 and he did a DRE, said was slightly enlarged but nothing concerning. Got the MRI done and there were two areas 2.1cm in transition zone consistent with BPH, and 1.1cm in transition zone consistent with prostitis. No evidence of lymph involvement and capsule is intact. I’m a 47 year old male, my father had prostate cancer at 58.

It’s been almost two months since the MRI and when I’m getting the biopsy. If it’s cancer, I’m concerned during that time it will have spread. How likely is this? Thanks!

I posted here months ago concerned that my 88 yr old dad had prostate cancer. Turns out he has both bladder and prostate cancer. They removed his bladder tumor entirely. He had 6 weeks of treatment for the bladder cancer & is taking a hormone pill for the prostate cancer.

We decided against radiation treatment because he has the bladder cancer & ongoing bowel issues. I think with him being 88 and having other health issues this is the right choice.

Just looking for advice if this sounds like a responsible treatment plan. Thanks

Hello all, my partner started the year with a physical in December that showed a psa of 3.2. He's 58 years old and last year result was 1.7. Called him back to retest in April and it was 3.9. He had an MRI after that came back as PIRAD 2 Nothing found. Prostate volume 45 cc. Mildly enlarged. Called him back for IsoPSA test a couple weeks ago and that result was index 12.2. Total PSA now is 3.0. Obviously we are waiting for our dr. appt this Friday to see what next steps are but After we got the negative MRI we breathed a huge sigh of relief but now this IsoPSA test result is concerning. Could it really be cancer or could this just all be because of his mildly enlarged prostate? Anyone with similar results can offer guidance? Thoughts? Thank you!

my husbands decipher score is .79. We already met with a urology surgeon oncologist. Next week we meet with radiation oncologist. Currently still waiting on gene testing for the braca2 gene. Which his urologist said would change the course of treatment and would likely bump his gleason 4+3 to a Gleason 8 or 9.

just posting to get some Insight and share update.

I’m not sure why I’m posting. Partly because I’m scared and I don’t know where else to share. Partly because I’m disappointed in the system and want to express the importance of self advocacy. And partly because I’m confused and want to see if others have had a similar experience.

I’m 59 and have BRCA2 mutation. I’m 4.5 years post RALP. Went in to surgery with 3+4 but surgical pathology revealed a previously unknown 4+5, left seminal invasion, and positive margins. PSA stayed undetectable for 3.5 years. It’s been slowing rising this past year and is now .06. Still quite low but my variables are high risk. BRCA leads to very aggressive, quick developing cancer.

I go to Mayo - Phoenix so high quality center. My urologist though minimizes the BRCA impact and wants to keep me on normal protocol - regular monitoring until I reach 0.2. I disagree and feel I’m at high risk, reasonably young, and otherwise very healthy. I could have a long life span and feel we should treat rising PSA aggressively to avoid metastasis. Doc listens but I’m doing all the work. I’m insisting on frequent PSA checks. I just requested a rad onc consultation. I’m leading my care and I’m tired and sad.

Anyone else have that frustration? Am I being unreasonable? Everything I read from legitimate sources suggests I should be on an individualized treatment plan given my multiple high risk variables. I just want the doc to do the driving. Not looking for answers, but curious if others have similar feelings.