r/ProstateCancer

I got diagnosed about 18 months ago.

I spoke with surgeons and radiologists about my options and the consensus seemed to be that since I was relatively young (63) the best option was surgery.

I had the surgery and everything seems fine, but the basic fact is they removed the boner machine.

I am glad that it was caught early and that the surgery means that I have very little chance of recurrance or future issues.

My problem is that I miss my boners. At this point I cannot have sex. I am using a penis pump for 30 minutes every day so that my penis does not forget how to get hard, but as soon as I remove the device, I lose my erection

I have been able to make myself reach an orgasm (took a ton or work) and I am ok with the fact that I cannot ejaculate when orgasming. I would be fine with a “dry”’orgasm, but what really irks me is that when I orgasm, I piss a bit. My doctor has told me that this is normal.

I hate all of this and I don’t want to have sex with my wife now. I just feel gross.

I am alive and my prognosis is good.

But, dammit I feel unworthy to even try and have sex and would not blame my wife if she decided to look elsewhere for someone who could get it up and not piss on her. She has been super supportive and shows no indication of feeling that way, but I almost feel like I should tell her that if that’s what she needs I wouldn’t object , if that makes sense.

I am not a person who wants to “share my wife” or get into any of that shit, but if she decided that a normal sex life was something she needed, how could I object? I love her and miss sex. There was a time that I would have been pissed if she cheated, but now that just feels selfish.

Being alive is good. The rest of it kind of sucks.

PSA Trend as of today:

So roughly you’ve got:

• Jan 2025: 0.01
• ~Apr 2025: 0.02
• ~Jul 2025: 0.05
• ~Oct 2025: 0.05
• Jan 2026: 0.099
• Apr 2026: 0.130

I was Gleason 7 3+4 , organ confined, .1mm positive margin.

My guess is just a little blip in my prostate bed...

After I was diagnosed with prostate cancer three weeks ago, I have been spending a good deal of time researching treatment options. I think it has been time well spent. What I know today can help me spot biased information. For example, a video entitled "3 Reasons Radiation Treatment May Not Be Your Best Option" came up in my YouTube feed today. Obviously, I have been watching YouTube videos about prostate cancer. Most of them from Prostate Cancer Research Institute. This one was not. This one was from a urologist. Shockingly, he was pro-surgery. The whole video, besides a boring history part at the beginning, was just him listing the radiation side effect risks. That is just too easy. Anyone can make their argument sound good by listing the disadvantages of the other option without mentioning any disadvantages of your option.

All Roads Lead to the Same Place. Maybe that should end with a question mark. I am too new to prostate cancer to say definitively. I thought if I kept searching I would find the killer app: a treatment that has the highest chance of preventing recurrence with the lowest risk of urinary and sexual side effects. I didn't find it.

It seems like no matter what we choose - surgery or radiation - there is a good chance that 5 or 10 years down the road the cancer might be coming back, and oh by the way you're also incontinent and impotent. What a great disease. But that's not all folks. No, unbelievably, there's more. ADT shrinks your junk to pre-pubescent size, and takes whatever sexual function you might have had left after surgery or radiation and throws it in the trash.

Stats: 64 Years old, decent shape otherwise, prostate-contained T1c, PSA 5.6, Gleason 4+3 in 4/13 cores and 3+4 in 2/13 cores, unfavorable intermediate risk.

Had decided on ADT brachytherapy radiotherapy combo over RALP even tough advised Ralp was best option at 51. Radiotherapist said might be an idea to see a focal therapy consultant. Did so today and he has advised ralp as best option considering my age now im doubting my radiotherapy combo decision. I feel like im back at square one after 4 months.

Hi all,

My dad was diagnosed metastatic with spread to his rib and spine about 3 years ago. We live across the country so I only get to see him about 4 times a year, but we FaceTime weekly.

He’s currently visiting and I’m noticing a lot of forgetfulness and it seeming like his brain is just…off. It’s like he has zero common sense. He’s always been somewhat forgetful, but this seems much more significant. Repeating himself a ton. Yesterday he asked me if owls could fly (while looking at one high up in a tree in our yard).

He’s taking Orgovyx and Abiraterone, along with all the other typical meds. He’s had radiation two years ago, and again more recently.

Is this typical for this treatment? It’s definitely more noticeable than the last few times I’ve seen him, but I know his treatments have gotten more intense over recent months.

That first week with the cath in was awful. Then they took it out and I pissed like a geyser.

1 day post cath I couldn’t stop leaking. This was rough on the psyche.

2 days post I realized that I was dry at night. I had to get up 3 times to piss, but my body woke me up.

3rd day I stopped diapers. Needed 2 pads that day and 1 that night.

Day 13 I stopped pads at night because they were dry in the morning. Not even a drop.

Day 14 I stopped pads in the morning and only used them in the afternoon when I got tired.

Day 16 I stopped pads completely.

Just had my 8 week post RALP PSA and it came back undetectable. But it wasn’t an ultra sensitive PSA which the surgeon advised me to get. I can’t find a place in my metro area that even does an ultra sensitive. The Oncologist said it was unnecessary as did my Urologist.

Final path report 4+3 with PNI, EPE and Cribriform. What do you all think? Age 47.

Just got my biopsy results yesterday (details below) and I'm trying to figure out what decisions I'll have to make and just how much this will change my life. The key things I see in my results are: 1. the right base sample has a Gleason of 4+3, grade group 3; 2. that sample also has perineural invasion; 3. the left side samples were all negative; 4. the other positive sample has a Gleason of 3+4 and group 2.

I have not yet talked to the urologist. I'm scheduled to see him next week. I don't feel confident with this doctor and want to change to another doc in the same practice.

Not only did I learn I have cancer, but I also just got a cardiac test (CTA) showing severe stenosis in my right coronary artery. I'm pretty sure I'm going to need at least a stent. Am I having a great week or what?

I have not yet talked to my cardiologist. That appointment is a month away.

My middle of the night thoughts on this last night included feeling like I've gone from being a young, active, healthy weight, 62 year old who looks 10 years younger than that to the start of being a fat old man with a hint of a urine smell. Plus too much of my self image is tied to being sexually active. I do not want to be in the market for penis pumps any time soon.

I think I have most of the basics down on treatment options and long term outcomes, but I would appreciate your thoughts on the bigger picture - what does this mean for the next phase of my life? If you have treatment opinions, I'd be glad to hear those as well. Thanks.

Here's my results: Prostate gland, Right base, Needle biopsy

- PROSTATIC ADENOCARCINOMA, TOTAL GLEASON SCORE 7 (4+3, GRADE GROUP 3) WITH 60% OF THE TUMOR PATTERN 4, WITH INVOLVEMENT OF 13 MM OF A TOTAL OF 22 MM IN TWO CORES OF PROSTATIC TISSUE

- PERINEURAL INVASION IDENTIFIED

Prostate gland, Right mid, Needle biopsy

- BENIGN PROSTATIC TISSUE

Prostate gland, Right apex, Needle biopsy

- BENIGN PROSTATIC TISSUE

Prostate gland, Left base, Needle biopsy

- BENIGN PROSTATIC TISSUE

Prostate gland, Left mid, Needle biopsy

- BENIGN PROSTATIC TISSUE

Prostate gland, Left apex, Needle biopsy

- BENIGN PROSTATIC TISSUE

Prostate gland, Region of interest #1, Needle biopsy

- PROSTATIC ADENOCARCINOMA, TOTAL GLEASON SCORE 7 (3+4, GRADE GROUP 2), WITH 30% OF THE TUMOR PATTERN 4, PRESENT IN TWO CORES OF TISSUE TOTALING 12 MM OF A TOTAL OF 18 MM OF TISSUE PRESENT

Hey guys. Thanks in advance for bearing with me as I know I’m not exactly the standard demo for this group.

I’m 27. Both my grandfathers had prostate cancer in their early 40s. Because of my family history, my doctor gave me a PSA test and it came back at 1.0, which is way too high for someone my age (my understanding is it should be no more than 0.7).

I’ve always urinated a LOT (like every hour) but until now I’d chalked it up to drinking ~a gallon of water a day (I exercise every day and live in a hot climate). Given my family history, should I be concerned? And if so, how can a younger guy push for testing when doctors almost universally consider this an older man’s disease?

After a phone conversation a few weeks ago Anthem said they cover HIFU. Doctor submitted for pre approval and it was denied today.. Goimg to have him appeal but who knows what will happen. Anthem told me today that they dont see how it helps my quality of life (guess cancer helps more!)

Wow!

It’s been 8 years since diagnosis and treatment. PSA continues to be undetectable. I’ll just share how I found out, what I did about it, and what transpired since.

My PCP raised the question after a suspicious digital rectal exam. I was 65. My PSA was 4.4. I went to urology and saw a PA. She said I needed testing and offered an MRI or, not and, a biopsy. I asked what the difference was and she said that the biopsy was more definitive. OK, then a biopsy it is. There was a cancellation so I had one 90 minutes later. It was performed by a urologist. I was told that they would call with results in 3-5 days.

2 weeks went by and I hadn’t heard anything so I started calling. Repeated calls went unreturned. I finally gave up and went on the portal, pulled up my pathology report and then used Dr. Google to explain that I had cancer and what Gleason score meant. I was 4+3. I called my PCP and explained the lack of communication and was told they’d call and someone would contact me that day. Several more days went by. My spouse, who can be pretty aggressive, called, got through, and was told they’d call could give me an appointment, 3-4 weeks out. No, she demanded one that week. OK, Friday at noon.

I went to the appointment and met the urologist who did the biopsy. She apologized and said that the results had gone back to the PA who had written the order and had no idea why I wasn’t contacted. She was in a hurry and said that I had cancer, intermediate aggressive, I needed treatment, and handed me a book to read, telling me it would explain my options and to call when I made a treatment decision.

That was it.

I read the book and it talked about surgery, radiation, etc. I had two friends, both doctors who had been through this and both recommended surgery and had done that themselves. OK, surgery it is but where to have it done. I have ZERO confidence in the local clinic even though my spouse had gone through breast cancer with surgery and chemo a couple years prior and had received excellent care. I had not gone online and read anything, no forums, etc. but I did search for where a good place for surgery might be. I decided on Cleveland Clinic, 5 states away. I saw my urologist and she even concurred, telling me that’s where she did her internship and residency and gave me the name of a doctor.

Long story short at this point, flew to Cleveland for consultation, liked what I heard, flew back a few weeks later for RALP. Spent a week in a nearby hotel, cleared to fly after catheter removal, flew back home. Recovery went well. Incontinence a problem.

My local urologist took over the post-surgical treatment. She recommended Kegels, of course, which I’d been doing to no avail, and I asked about PT. There was no pelvic floor specialist closer than 500 miles so I saw one that deals with child bed wetters or geriatric patients. I think what she had me do made tings worse.

At the one year mark I had an artificial urinary sphincter installed. It lasted for 4 years before I had it replaced. That was 2 years ago. 4 years ago, I was traveling through Italy when an inguinal hernia emerged. I’d read that they are a possibility after RALP. I had it fixed and 1 year and 4 days later it came back, not quite as big. I bought a support and wear that when I workout, stand for extended periods, etc. I do not intend to go through surgery for it again.

So, I am happy to be cancer free but not that happy with the overall care I have received locally. This has led us to considering relocating to somewhere with better choices in healthcare at some point.

On the journey after diagnosis for prostate cancer as comforted by local urologist. I’m trying to understand best place to start in a Chicago with respect to 2nd opinions, follow ups , etc. Northwestern? University of Chicago?

Other?

Realised I tick most of the symptoms off for PC, had my blood test yesterday and a physical tomorrow.

What should I expect?

(Please be kind 😂)

Happy to be DM'ed if you didn't want to share here.

TIA

Title: Gleason 4+3, Decipher 0.74 – Refusing "The Poisons" (ADT) and Surgery. Advice?

Post Body:
I’m looking for some real talk from guys who have been in my shoes. I was recently diagnosed with Gleason 4+3 and just got a Decipher score of 0.74 (High Risk). On the bright side, my PSMA PET scan came back clean.

I also have CKD 3b (kidney disease) and AFib.

I’ve made a firm decision: I am NOT doing surgery and I am NOT doing ADT (hormone therapy). I’m not interested in the "poisons" or the side effects. I also want to avoid gold seeds (fiducials) and SpaceOAR gel if possible.

I’m seeing a specialist (Dr. Nguyen) on the 28th and I’m leaning toward MRI-guided SBRT (MRI-LINAC) or CyberKnife as a "radiation only" approach.

• Has anyone here done SBRT/CyberKnife for a 4+3 without taking ADT?
• If you have CKD or heart issues, how did the radiation affect you?
• With a clean PSMA but a high Decipher, did anyone else decide to go "local treatment only"?

I’m trying to prioritize my quality of life and "good years" over everything else. Thanks for any insight.

I am 13 months post RALP. 66 yo, decent enough shape. I take 5m of Cialis daily (if I remember) and the occasional 20m tablet. I have been using tri mix for months. BUT - Saturday and again today we had launch w/o the stick!

Some sense of normalcy is awesome.

I've gained a lot from everyone's posts, especially on need for patience as recovery progresses. So just want to send back some of that good karma.

I'm 68, 4.5 months post-RALP (Gleason 4+3). Clean margins, undetectable PSA, for now the big issue -- PCa -- looks good. But despite doing some kegels ahead of surgery (not enough, obviously) incontinence hit me hard. Completely in diapers for the first 2 months, despite ongoing physical therapy with pelvic floor specialist. Then realized I had become mostly dry overnight (maybe a few drops), so switched to guards while sleeping. But daytime was still filling diapers, especially if I went up and down stairs, went for a walk more than around the house. And since I live in a 3-story house, walk to work, and move around a lot around a college campus during the day, I stayed in diapers. Meant I had to buy new shoes, so I could slip them on and off when pulling off my pants to change diapers -- hard to retie shoes in a public bathroom. Definitely was a psychological downer.

Last couple of weeks, began to get the feeling maybe I was doing better. Tried wearing just guards on the weekends around the house. Seemed OK. So today I took the big step: guards all day, at work.

SUCCESS! Still leaking, need to change guards every few hours. But I can go back to my regular shoes! (I hate the slip-ons :-) )

So: keep up hope!

Sigh of relief. Had received a score of .02 after 2 years of testing undetectable.

Went back today and my results came back less than .02, so I’m happy.

This time before my test I did not work out, did not ride a bike for 4 days, no sexual activity for the last several days. I don’t know if that had any effect. My doctor said studies regarding that are inconclusive after a RALP. They can definitely cause weird results if you still have a prostate .

Fortunately I had a low PSA prior to surgery, clear margins, no sign of spread . So we were both concerned when I had the uptick. Hopefully it stays low

I had my regular physical and my PSA jumped from 2.4 in October 2025 to 4.75 on April 8th. Doctor said let’s retest in a week or so which I just did and it came back at 7.65. I am totally freaking out that this is some aggressive prostate cancer. Everything I have been reading is saying this kind of velocity is very concerning and that it could point to aggressive PC. I have an MRI scheduled in a week. Any insights would be appreciated.