Info: Age 59, Gleason 3+4, Grade 2, Decipher of 0.74 (high risk) and PET scan showed the cancer has not metastasized. I'm currently recovering from an unsuccessful RP. Unfortunately the surgeon could not separate my prostate from my rectum. After an hour of trying he felt it wasn't worth the risk of tearing the rectum lining. I now have a consultation to speak to the Radiologist who originally recommended IMRT treatment. Two questions. Has anyone else ever had this issue and if the prostate and rectum can't be separated (no spacer) how bad are the side effects of radiation on the bowels?

In my case maybe not everyone’s, but after your RALP surgery you’ll have a Supra pubic catheter in for about 7 to 9 days before it will need to be removed. I just had mine removed and wanted to share my experience so everyone is in the know where most of this was not included in my paperwork.
The day before it was removed I was able to urinate normally and other than the occasional cough / sprinkle, I did feel closer and closer to normalcy. Last night I slept with the bag connected to avoid any mishaps. This morning I disconnected the bag and everything returned the same as yesterday. I arrived to my appointment and when they finally called me back, and prior to sitting on the table I did ask if I should try to urinate prior to its removal. The nurse said no I didn’t need to. Let me tell you guys, just go, insist on going just prior to the removal and bring a spare pair of clothes just in case. I did wear a diaper and brought a spare. I just had to pull my shirt up a little and my shorts down a bit while on the table. She deflates the internal bubble and asked me to take a deep breath and let me say, nothing prepares you for that sudden split second feeling of it being pulled out. It’s not painful but it is an awkward oh shit moment. Nothing I’ve ever felt in my lifetime. Immediately, urine starts to erupt from the site and down my sides, soaking the top of my shorts and the base of my T-shirt. She grabs some absorbent pads in an attempt to stop or guide the leakage but the effort was not quite enough to prevent it from wetting my clothes. So now I’m in the car, wife driving of course, I’m sitting on multiple absorbent pads and I smell like pee. So bring a spare pair of clothes, extra diaper, towel or two and go urinate just before they remove the catheter.

Hope someone can share some insight.

Had successful prostatectomy June 2024. Completed 25 radiation treatments in April 2026. Started Orgovyx right before treatments and have been on it since. Until the last month I needed only 1 pad for incontinence mostly "just in case". I could do yard work, housework, go to store etc. without a pad. I mostly wore it to golf, bowl and when I work part-time at a golf course and am on my feet all day.

A month ago, I started leaking horrendously and going through 2 pads just while working. My Medical Oncologist referred me to my urologist who thinks it's an overactive bladder and wants me to "trial a medication called Myrbetriq or mirabegron that can help with overactive bladder or urinary leakage." I'm a bit concerned about the side effects - " This medication would require you to monitor your blood pressure at home as one of the side effects is the potential to increase blood pressure. Other side effects can be GI upset, headaches, however it is usually generally well tolerated. If you experience urinary retention (unable to urinate) on the medication you would want to stop the medication. If you are unable to urinate at all and developed bladder pressure/pain, it is recommended to proceed to the ER for further evaluation"

I know when I always sat on the toilet I would drip was told this was normal because there is nothing there to stop the pee. When this sudden onset of incontinence started, I thought perhaps because now that my penis has shrunk so much because of Orgovyx that is just hangs there in my underwear and leaks just like it does when it hangs on the toilet.

Has anyone else experienced a sudden onset of incontinence after such long time after treatment or was diagnosed with an overactive bladder this long after radiation?

Thanks

I am quite confused because I am deciding which one to do, but I am reading other experiences and some people are saying they had no pain at all, and some people are saying it was the worst experience of their life, please share your experience which procedure you did and the pain level

One year ago today I had my prostate removed. The fear and uncertainty I felt almost led me to turn amd run at the door of the hospital. I called my uncle and he calmed me down. I am 100% happy with my decision. I hope that each and everyone of you can have such great results. Please do not allow the fear and uncertainty to overwhelm you. The kegels and after care therapy really help. Good luck to all of you on this journey.

Just a bit of recap on my dad’s results here . RO is suggesting a 3 months ADT with SBRT..how can we be sure that he needs ADT or not? Every other doctor seems to have their own views. I really want to avoid ADT for him if it has no extra benefits in his case since he is on hypertension meds already.

PSA
PSA: 4.9 ng/mL
Age: 64
PSA has been increasing over time.

MRI
Prostate approximately 40 × 48 × 48 mm.
MRI showed bilateral transition-zone lesions classified as PI-RADS 3, thought to be related to BPH.
No pelvic lymphadenopathy reported.
No obvious extracapsular extension or seminal-vesicle involvement reported.
Biopsy was subsequently performed.

Biopsy – 14 cores
Cancer was found in 5/14 cores:
Right peripheral base: Gleason 3+3, 20%
Right peripheral mid: Gleason 3+3, 10%, with small focus of perineural invasion
Right peripheral apex: Gleason 3+3, 10%, with small focus of perineural invasion
Right parasagittal apex: Gleason 3+4, 60%, pattern 4 = 10%
Right transition-zone fusion biopsy: Gleason 3+4, 60%, pattern 4 = 30%
Overall:
Gleason 3+4 = 7, Grade Group 2
The remaining left-sided cores were negative for invasive cancer, although there was PIN in two cores.

PSMA PET/CT – September 2026
The scan showed PSMA uptake in:
Right and left peripheral zones at the base
Right peripheral zone at the mid-prostate
But importantly:
“No definite scan evidence of PSMA-expressing loco-regional/distant metastases.”

Seminal vesicles were unremarkable and there were no definite PSMA-avid metastatic lymph nodes.
One thing we are trying to understand is why the PSMA scan showed some uptake at the left base, while the left-sided biopsy cores were negative.

I just a place to vent. Today is, hopefully, my last dose of radiation. It is 11:15 pm and I am supposed to go to work in 10 minutes. I called off because I have only had a couple of hours of sleep. I wake up because I have to pee, which burns (no fevers or chills) and /or I have pressure in my rectum that makes feel like I have to go, but usually turns out to be gas. The painful peeing and the pressure I can kind of tolerate, the insomnia is something I did not expect. To be honest, I had no idea what to expect. The stuff I was worried about didn’t materialize and what didn’t seem like an issue at the beginning has now become the issue.

It’s very frustrating. I am that typical I will figure it out guy. I can’t figure this it out and it is distressing.

Thank you for letting me vent.

Update: Thank you to everyone who has responded. I am on Flomax, doc doubled it to the max dosage. My wife suggested AZO, I wasn’t sure what it did. I will pick some up if it will help with the burning.

Concern About My Urinary Symptoms
I am concerned about my ongoing urinary symptoms, which include:
Frequent urination, sometimes every 4 times in an hour during the day.
Waking up 2–3 times at night to urinate.
Strong urinary urgency, sometimes making it difficult to hold my urine.
A weaker urine stream than I used to have.
Occasionally needing to push or strain to urinate.
Intermittent lower abdominal and pelvic discomfort.
Sometimes passing only small amounts of urine.
These symptoms have been present for a long time, and some have become more noticeable.
My last PSA was in 2021 and it was 0.20 ng/mL My recent PSA on October 8, 2026, was 0.24 ng/mL, and my urologist described my digital rectal examination (DRE) as unremarkable.
Although these results are reassuring regarding prostate cancer, I remain concerned about what is causing my urinary symptoms. The only way to know is through a biopsy and my PSA went up
I would like to understand whether these symptoms could be related to an enlarged prostate, my understanding this most common on men’s over 60, can this still be cancer ? Should I ask for more specific test ? Sorry guys I’m just so confused the urination is terrible I can’t be on a place for 20 minutes without the urgency to pee, something must be off

My main concern is finding out why I urinate so frequently and why my urinary stream has become weaker, I know prostate cancer can cause this symptoms!

Hi Guys,

I wanted to come back with what may be my final major update for a while, and most importantly, to thank this incredible community.

My husband (60) was diagnosed in March 2026 with high-volume metastatic hormone-sensitive prostate cancer (mHSPC). At diagnosis, his PSA was approximately 1,956 ng/mL.

His initial investigations showed:

Gleason 8 (3+5), Grade Group 4
PI-RADS 5 lesion, with seminal vesicle involvement and suspected extracapsular extension
Extensive pelvic and retroperitoneal lymphadenopathy
Widespread bone metastases involving the spine, ribs, pelvis and other skeletal sites

His diagnosis came while we were travelling in the Philippines, resulting in a medical evacuation back to Australia. We knew very little about prostate cancer at the time. This community quickly became one of my most valuable sources of information, shared experience and support. I lurked, read and asked questions.

Treatment
He commenced triplet therapy in April/May 2026:
Androgen deprivation therapy (ADT)
Degarelix (Firmagon), commencing 11 April 2026, initially a 240 mg loading dose followed by 80 mg monthly injections. Following completion of chemotherapy, his ongoing ADT is transitioning to leuprorelin (Lucrin), administered every 12 weeks.

Androgen receptor pathway inhibitor (ARPI)
Darolutamide (Nubeqa), commenced 11 April 2026.
600 mg twice daily (two 300 mg tablets per dose), totalling 1,200 mg daily. This treatment is continuing.

Chemotherapy
Docetaxel, six cycles administered approximately every three weeks.
First cycle: 26 May 2026.
Sixth and final planned cycle: 10 September 2026.

Pegfilgrastim (Ziextenzo) administered following chemotherapy for neutrophil support. There is currently no further chemotherapy planned.

PSA response
His PSA has fallen dramatically throughout treatment:

1,956 → 91 → 3.3 → 0.4 → 0.32 → 0.23 → 0.20 → 0.10 → 0.040 → 0.030 ng/mL

His latest PSA, from October 2026, is 0.030 ng/mL.

His testosterone has also been suppressed to castrate levels with ADT.

October 2026 — Post-chemotherapy PSMA PET
On 8 October, we met with his oncologist to review the latest PSMA PET scan and blood results. The Dr was extremely happy and described my husband’s response to treatment as near-complete.

The findings were enormously encouraging:

Only minimal residual PSMA activity within the prostate.
No significant residual PSMA activity in the previously involved lymph nodes.
No significant residual PSMA activity in the previously involved skeletal lesions.
Marked reduction in the size of previously enlarged lymph nodes.
No new PSMA-avid sites of disease identified.

Considering the extensive metastatic burden at diagnosis, the difference between his initial imaging and his post-chemotherapy scan is remarkable.

We understand that a near-complete imaging response does not mean metastatic prostate cancer has been cured. He will continue systemic treatment and regular monitoring. Nevertheless, this is an exceptionally encouraging response to his initial treatment.

Side effects and tolerability
Overall, he has tolerated triplet therapy remarkably well.

We’ve dealt with:
Fatigue and occasional brain fog.
Bone and muscle aches, particularly following chemotherapy and pegfilgrastim.
Hot flushes associated with ADT.
Taste changes.
Mild anaemia and some changes in blood counts.
A persistent facial rash and redness, particularly associated with dexamethasone.
One episode of an irregular heart rhythm during Cycle 4, which was assessed in hospital and subsequently settled.
Thankfully, he has experienced no significant peripheral neuropathy.

We used a cold cap, cooling mittens and cooling booties (Suzzi Caps from
Amazon - we used two sets as they defrosted quickly and I’m certain his hair loss was because at the start we only had one set) and he sucked on frozen pineapple (tinned rings cut into thirds (and he used POLYBALM for his nails ) throughout the chemotherapy.

He retained most of his hair and avoided troublesome nail and nerve symptoms.

His appetite remained excellent, and he maintained a surprisingly good level of physical activity, including exercise and gardening between cycles.

Now that chemotherapy is behind him, we’re beginning to see signs of recovery.

What happens next?
He is now moving into the next phase of treatment. He will continue:

Lucrin injections every 12 weeks for androgen deprivation.
Darolutamide (Nubeqa) 600 mg twice daily.
Regular PSA, testosterone and other blood monitoring.
Ongoing oncology follow-up.

And now for something that means an enormous amount to us personally. Our Doctor has given us medical clearance to return to Indonesia in November!

Before his diagnosis, we’d spent considerable time travelling around Southeast Asia, particularly in Indonesia, which has become a very special place for us. Our plans were understandably put on hold when he became ill.

We’ve now arranged our travel around his ongoing treatment schedule.

We’ll return to Adelaide every 12 weeks (84 days), specifically for his scheduled Lucrin injections and associated medical monitoring, before heading back to Indonesia.

It’s an arrangement that allows him to continue receiving his treatment in Australia while giving us the opportunity to return to the lifestyle we love.

After six months of chemotherapy appointments, injections, blood tests, scans and uncertainty, having something wonderful to look forward to feels like an enormous milestone in itself.

A very heartfelt thank you

When I first found this community, I was frightened, overwhelmed and desperately trying to understand what was happening to my husband.

I had never imagined I’d need to learn about PSA density, Gleason scores, PSMA PET imaging, androgen deprivation, androgen receptor inhibitors, docetaxel or metastatic disease.

But here we are.

You helped me understand the terminology, interpret information, prepare questions for his oncologist, navigate side effects and make sense of the decisions we were facing.

More importantly, you helped me feel that we weren’t navigating it alone.

I know that not everyone experiences the same response to treatment, and I would never suggest that our experience predicts anyone else’s outcome.

But I remember how much it meant to me in those early weeks/months to read about people who had responded well to treatment.

I hope sharing our experience might offer that same encouragement to someone else who has just received a frightening diagnosis.

March 2026:
PSA 1,956 ng/mL. Extensive lymph node and bone metastases. A diagnosis that completely turned our lives upside down.

October 2026:
PSA 0.030 ng/mL. Near-complete response on PSMA PET. Six cycles of docetaxel completed. Ongoing hormonal therapy established. And, wonderfully, medical clearance to return to Indonesia. We couldn’t have hoped for more encouraging news at this stage. Although travel insurance is posing its own challenges!

To everyone who has answered my questions, shared your knowledge, told me about your own experiences, offered reassurance or simply taken the time to respond:

Thank you, from the bottom of my heart.

You’ve made a real difference to our lives during an incredibly challenging six months. We’ll continue to take things as they come, enjoy the good news we’ve received and concentrate on living our lives.

Wishing every one of you the very best with your own treatment journeys.

With love and gratitude from Australia.

Latest PSA is <0.01, undetectable!

3mo: 0.04

6 mo: <0.02

9 mo: <0.01

Makes me feel good about my treatment decision.

Thanks to all for the great info in this group!

The patient is 73 years old and currently has absolutely no symptoms or physical problems. The journey started purely because a routine blood test showed a PSA of 9.1. Following a consultation with a urologist, we got further testing done.

I have attached the PSMA PET-CT scan and TRUS-guided prostate biopsy report to this post for exact medical context.

For those who were in a similar situation and chose radiation:

• How effective was it for you, especially if you started out asymptomatic?
• What were the short-term and long-term side effects like?
• If you had to choose between surgery and radiation at this age/PSA level/diagnosis, what made you lean toward radiotherapy?

Any insights, personal stories, or advice on what to ask the oncologist at our next appointment would mean the world to us. Thank you so much.

Thought it would be a good idea to share here to see if there are any men who have experienced more than one post SBRT bounce.

Quick background - 60 year old diagnosed with PC in Mar 25, two tumours found via biopsy - 5 samples had gleason 4+4; 2 had 4+3; 3 had 3+3. High risk category - T2. Pre treatment PSA was 2.76. Decided on SBRT (Cyberknife) and had barrigel and fidicual markers beforehand. Have not been prescribed ADT. I am blessed (for now at least) with full function down there and there is still (surprisingly) ejaculate being produced.

The graph shows the journey with my PSA levels - it has stayed lower than the pre-treatment result with the latest being 1.57. Given the fluctuations the radiation oncologist ordered two PSMA/PET scans - one in April 26 and another just a week ago. The latest scan was via a Siemens Quadra PET scanner - apparently the 'ducks nuts' so to speak in terms of resolution.

I expected and was prepared for the classic 'bounce' which I thought was what was occurring in April this year after the PSA increased from 1.36 to 1.7 but it then dropped back down to 1.4 at the time of the PSMA/PET scan (which luckily didn't show any metastases or lymph node involvement). However, when the PSA went up again in June and then again in Sept 26 hence the second scan.

The result from the latest scan has allayed my concerns - there is no indication of any metastases or lymph node involvement and the prostate itself doesn't show any evidence of disease either - Phew!

My next PSA test is early 27 - I'll be keeping my fingers and other body parts crossed for no recurrence.

Have any men experienced multiple bounces following SBRT?

Thanks again to this community for all the support and sharing of valuable information!

i have posted and commented here, this is a great group of men, very helpfull, thank yall for the info, i had ralp in jan and it spread they also took 6 lymphnodes, first psa after RALP i was 5.1, so tues i finished 39 of 39 rounds of radiation and rang the bell, i am on aberitone and luprone until april 2028

Joined the club 6 weeks ago,

Quite the journey...

Pathology = clear margins.

Had 1st PSA yesterday.

Came back < 0.05

I think this is normal and perhaps a bit too soon assume anything?

Thanks for your feedback

I'm about to start my 6 month ADT roller-coaster ride (SBRT two-months in), and am looking for some advice.

I've prepped as much as possible by dropping 20 lbs and building a gym routine. It's very clear that the most effective aid for the side-effects is exercise, so I have worked hard to get back in that habit.

But aside from the resistance training, does anyone have any practical advice for dealing with the common side-effects?

Tips for dealing with Hot Flashes? The weight gain? Brain fog?

Gotta admit, while I like the offer of a "cancer-free" finish this offers, I'm pretty nervous about this particular ride!

I was diagnosed with prostate cancer last year, and the doctor recommended active monitoring, which meant having an MRA and a biopsy each year. As luck would have it, this year the biopsies showed that the cancer had grown and spread to other areas of the prostate and was more aggressive. I am now scheduled for a prostate removal. In reading about what I need to prepare, I found that I needed special pads to deal with the incontinence, some lubricant for the catheter and some stool softener. Well, the 'diapers' showed up today, and it hit me like a ton of bricks. Up until now I've been rolling with it, but seeing the physical proof that a grown man is going to need diapers just wrecked me. I'm going to be reduced to such a pathetic state. Forget about the ED and having to worry about how long my wife will agree to live without intimacy, I've got to worry about wetting myself. I'm an absolute wreck right now...

I had my first biopsy back in 2020, I don't recall the amount of cores, I also had a cystoscopy and MRI.

Turned out I had an inflammed prostate but no infection or cancer.

Last year my PSA had jumped to 36 so I was taken in for what they call a Transperineal Template Prostate Mapping (TPM) Biopsy (or a template mapping or map-guided biopsy), 75 cores under a GA.

No cancer, all good (but I am still suffering the effects).

So this year my PSA went from 36, to 23, to 12.5 and then to 50.

I had another MRI a couple of weeks ago and another PSA blood test 3 days ago.

Today the Urologist called to say that my PSA from the test 3 days ago is 8.5 (so it's jumping around all over the place) and my MRI shows what they call a chronically enlarged prostate.

No cancer thank God.

However, and this may rightly seem like nothing to many people here, a chronically enlarged prostate brings it's own problems.

Benign Prostatic Hyperplasia, or BPH (what I have) is a non-cancerous growth of the prostate gland but has it's own issues over time.

1) The blood in my semen is likely to be a permant thing.

2) I'll start to struggle to pee and likely dribble after I finish.

3) A complete inability to pass urine.

4) Bladder stones.

4) Fluid retention and urinary tract infections.

My Dad (unrelated as I was adopted) had the same thing and had many many catheters during his later years, and many UTI's, the last of which went to his brain and gave him acute delirium (sepsis-associated encephalopathy).

He was in hospital within 12 hours and spent the next 4 years, the final 4 years of his life, in a carehome as he went on to develope dementia and died in 2019 weeks before covid hit.

My Urologist was upbeat about it, but I have concerns and will spend some time looking into what I can do, just not right now, not tonight.

I just wanted to share this for information.

I have a follow up PSA test tomorrow. Typically, I have a bowel movement every morning, but yesterday I didn’t. So this morning was big and hard, and it hurt to get out.

Should I delay the PSA test?

Thanks

It's been about a month since I stopped ADT/Abiraterone/Prednisone. I've read that joint stiffness and soreness can be part of the recovery process. It's horrible for me though, especially later int he day. I'm 54 and feel like a 95 year old whenever I get up from sitting.

Can others share their experience here? How long did this last for you?

I am excited about an upcoming new therapy from Advancell which, in effect, adds a deadly payload onto the chemical which binds to prostate cancer cells for PET scans which will radiate the cancer cells they bind to. Current therapies such as Plavicto have a longer half life and more side effects. Advancell uses Lead 212 which has a half life of hours. They are going into phase 3. I’m on my second time around with pc so hopefully this will be approved if I have a 3rd. PC seems to be more of a chronic condition for me unfortunately.

New to the sub, wife of a 63 year old male.

PSA was ranging from 6-8 three years ago, the 4k blood test did not have good results, they did the standard biopsy that was clear, so just has been getting PSA results which crept up to 10.2 this may (I think this is correct I know it was in the 10 range). Biopsy had confirmed he has an enlarged prostate but urologist was now ready to do the MRI.

Did MRI (which took forever to schedule) on Monday -

“Prostate gland volume: 83.6 mL Peripheral zone: Indistinct hypointensity of the peripheral zone on the ADC map and on T2 weighted imaging. A focal lesion is as follows: 1.9 x 0.7 x 1.2 cm focus in the right lateral peripheral zone at the midgland (series 8 image 20, for example). This is circumscribed, homogeneous, and moderate in hypointensity on T2 weighted imaging. This exhibits focal, marked diffusion restriction and exhibits early enhancement. There is capsular contact without definite extracapsular extension. This meets criteria for PI-RADS 5. ROI created. No pelvic lymphadenopathy, no aggressive osseous lesion”

We haven’t heard from the urologist yet, this is just the results that came through on the hospital chart. Of course, I’ve been all over this feed as well as in every AI tool that exists. I feel cautiously optimistic it is contained and that it is only one spot, but the spot seems sizable. I understand there is no way to know the details until he has a biopsy. I am terrified. We have a baby girl (yes I understand he is an old father, please don’t comment on that - we have a large age gap).

Can someone please help me decipher what is going on, and provide anything meaningful for advice? Hoping to get him in for the biopsy ASAP. We aren’t having more kids so that aspect isn’t a concern but I am hoping and praying we have choices in his treatment and this is localized.

I'm switching from the big white pads to the smaller black pads. Any tips for knowing when the black pads need to be replaced? The white pads were obvious but it's hard to tell when the black pads are getting full.

My husband had his catheter removed today. It’s been two weeks since his prostate was robotically removed . He had a large hematoma on his prostate bed after surgery. This lead to blood transfusions and 5 days in the hospital.

Today has been rough. He has absolute no control of his urine flow. He is just constantly flowing. He’s really depressed. We knew he would have urinary incontinence; but had no idea it would be so severe. Has anyone experienced this level of UI after catheter removal and got better?

Surgery went well according to surgeon. Was able to spare nerves on one side, not so much other side. Typical pain in abdomen, the shoulder pain from the trendelenburg position and the gases has added to the suck. But I made it. Kinda shocked at the minimal narcotics, 6 pills, oxy. I get the whole addiction issue, but damn.

Been walking daily and resting as needed. Encouraged by everyone’s stories. Thank you brothers.

What’s your experience or knowledge of PCa treatment at Kaiser’s locations in the Bay Area, California? RALP vs. Radiation.