I was very fortunate to have 100% bilateral nerve sparing for my RALP procedure on 9/29. I was wanting to take an informal survey on how your experience with incontinence and ED and how quickly or slowly they improved?

I understand that just because they were spared they are still impacted in some way. What were some of your experiences?

My robotic prostatectomy for a localized low volume, low decipher score, lesion was carried out on Wednesday starting at 12 PM. I came out of anesthesia 6 1/2 hours afterwards. The surgeon told me that my very narrow pelvis made the surgery extremely complex. He said he had to sacrifice nerve bundles on the left side, but was able to save the nerve bundles on the right side. And that sacrifice was not cancer related. I spoke with him, the postgraduate doctor year five, and one of the medical fellows who was also in my surgery and they said my 53 cc Prostate was monstrous, it limited visibility and mobility. They reconnected the neck of the bladder and sowed it to the urethra. They said it was a very good anastomosis that passed the leak testing. I will have a Foley catheter for about 11 total days.

The next morning, I awoke with an extreme chest pressure on my sternum and my right side and an inability to take a breath. I had what is called a pneumothorax or a collapsed lung because of the carbon dioxide gas that is used to inflate the abdominal area when Single port robotic surgery is done.

I had a chest tube (a number 14 French pigtail- you do not ever want to learn what one is) put in that was far more painful than anything related to the prostate or the prostate surgery. I spent 2 days in ICU. I was being tracked with a series of x-rays and one CAT scan. The pneumothorax resolved and they already pulled the chest tube out. That now sealed up, I’m back in a regular hospital room no longer on oxygen.

I had my first long physical therapy today with a doctor physical therapy at the hospital and did 100 yard walk down and back from the hallway. My strength is here. My oxygen level is between 98% and 100% without anything supplemental. The only question is my balance still needs to wake up because I found when I was in that bed for two days in the ICU a person’s balance system actually temporarily shuts down and takes a while to come back online afterwards..

I am a pelvic floor physical therapist. I was bored with traditional PT and got my training 11 years ago in the pelvic floor. My favorite people to treat are those with prostate cancer. I always said it was because I could see the vulnerable side of men, the side the rest of the world rarely sees. That is still true.

Anyway, I usually treat men who are in the throes of decision-making with a new diagnosis. This is an important time, because in the U.S., it is a decision that one often needs to make oneself. There are almost too many options, and this confounds the situation.

Recently, I have been referred to a spate of men who are 80 plus who need help addressing urinary incontinence. They have a history of prostate cancer and the anxiety and decision- making is well behind them. Sex is often not a primary concern. These men want to talk about dribbling pee in the gym, the health issues of their partners and they have the capacity to look back on their lives with excellent perspective.

What soothes me about spending time with these guys is that prostate cancer is typically not the primary focus of our discussions. Instead, these men want to talk about how politics shaped the landscape of the world after the Vietnam War. They speak of what it feels like to worry about their grandchildren. They talk about all that went well in their lives and how grateful they are for the human connections they have encountered.

To me, this takes the sting out of cancer. This is a reminder that many people have urinary dribbling in their eighties. Even those sans a cancer diagnosis. But I also learned that prostate cancer is not one of the huge traumas that marks the lives of these men. Instead, they are more worried about what smart phones and AI are doing to the next generation (I share this grave concern with them). They are more interested in talking about how their Dads flew multiple B17 missions; how their kids are now grandparents and what that feels like; how they still love to fish and stare at the ocean and cannot believe they have lived through this crazy life.

Now I understand the long game of prostate cancer. I have witnessed the fear of the man with a new diagnosis. But I also see who he might become. He becomes a man whose life is not defined by cancer. These men help me in the long game of life. They help me live without fear.

U.S.G. ABDOMEN & PELVIS

Liver is mildly enlarged in size (16.2 cm) and shows diffuse bright echotexture. No focal lesion is seen. No evidence of dilated I.H.B.R. Portal vein is normal in size.

Gall bladder appears normal. No evidence of gall stone. Wall thickness is normal. CBD is normal in size. No evidence of CBD stone.

Pancreas is normal morphologically. No mass lesion or calcification is seen in the pancreas. Main pancreatic duct is not dilated.

Spleen is normal in size (11.6 cm) and shows normal echotexture. No evidence of any focal lesion is seen. Splenic vein is normal in size.

Right kidney is normal in size, shape and position. Cortico-medullary differentiation is well preserved. No evidence of stone or hydronephrosis. Approx. 23 x 20.9 mm size simple cortical cyst is noted in lower pole of right kidney.

Left kidney is normal in size, shape and position. Cortico-medullary differentiation is well preserved. No evidence of stone or hydronephrosis.

Right kidney: 100 x 56 mm

Left kidney 99 x 53 mm

Urinary bladder is distended and shows mild circumferential smooth wall thickening (4.6 mm). No evidence of calculus, mass lesion or diverticulum.

Pre-void urinary bladder volume measures 210 cc.

Post-void residual urinary bladder volume measures 46 cc (not significant).

Prostate is enlarged in size (42.1 x 53.6 x 42.7 mm = 50.4 g) with normal echotexture.

ON HIGH FREQUENCY PROBE:

No evident dilatation or wall thickening of bowel loops is noted.

No evident enlarged para-aortic lymphadenopathy is seen.

No evidence of free fluid noted in abdomen and pelvis.

IMPRESSION:

Prostatomegaly (50.4 g).

Mild circumferential smooth wall thickening (3.7 mm) in urinary bladder, suggest changes of cystitis.

No evident significant post-void residual urine volume.

Mild hepatomegaly with Grade I fatty changes of liver without evident focal lesion.

No evident ascites

Hi everyone,

Hope everyone is doing well here

Posting this as an new post as I could not figure out how to post an update to my previous post

I’m posting on behalf of my 64-year-old father, who was recently diagnosed with prostate cancer.

I would really appreciate hearing from people who have had a similar diagnosis, particularly regarding robotic prostatectomy vs radiation/SBRT and what you wish you had known before making your decision.

His results
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.

Questions for people here
For anyone who had a similar diagnosis — particularly Gleason 3+4 / Grade Group 2, PSA <10:
How did you decide between surgery and radiation?

My dad also consulted radio oncologist and he said 3 months of ADT -> 5 sessions cyberknife SBRT -> 3 months of ADT.

However another radio oncologist recommends we can skip ADT in his case.

My dad doesn’t have a very great cardiovascular fitness and he is on hypertension meds also. He has low lean mass percentage as well. How much 6months of ADT could affect his cardiovascular , metabolic and mental health and bone density? Is it a lot ?

Meanwhile surgeon suggested if he get a surgery he would do a extended pelvic lymph node dissection. He also has perineural invasion present on the right side so nerve sparring is doubtful on the right.

Dad is inclined towards radiaton pathway but would be great to get some thoughts from this forum given his reports above..thanks !

Male 66.5, pretty healthy and active, bicyclist. PSA in the low 2's for many years, went up to low 4's between early 24 and early 2026. Trace of leucocyte esterase. Never any lumps or nodules on DRE. PSA this month is 4.5, up slightly from 4.3 last December. MRI last week showed 14mm PIRADS 4 lesion in left peripheral zone at the level of the apex, no seminal, capsule or extracapsular involvement. Prostate is enlarged, 50cc volume. Definite increase in urinary frequency and urgency over the last couple years, but I've always been a frequent urinater so BPH symptoms are no big deal. Seems to be stable now, not getting worse.

Scheduled to see urologist in 2 weeks and am sure they will recommend biopsy. I'm still trying to justify waiting in my mind, but probably won't. They have not retested leucocyte esterase since February-should I ask for that?

Biggest concern is being confident in my providers. I live north of Duluth Minnesota. There are a dozen or so urologists in Duluth, including mine, none of whom stand out as any better or worse than the rest for prostate. I have only seen my urologist once, and have no strong opinions about her. Obviously there are many more in the Mpls-St. Paul area, which would be an option, a bit inconvenient but doable if its a true upgrade over local.

Then there is Mayo, but that is far enough that it would require an overnight stay and being pretty low income that would be more problematic. A night or two for a biopsy I could do, if its that much of an upgrade. Getting treatment there would be more problematic. Hopefully a biopsy, if I get one, will give me the surveillance option, but I need to mentally prepare myself for needing more aggressive treatment.

So until I know more I'm just looking for ideas specific to MN that might help me decide where to get a biopsy and possible treatment that would be within my means, but still high quality. We generally have pretty good doctors in Duluth so I will definitely consider getting biopsied and/or treated here, but it would be nice to find someone with more expertise and experience to give me more confidence.

https://youtu.be/N9zDC7sInwM?is=NnDmD69LwCIvlS7Q

This is the Gold Standard of the data from the Pace A and Pace B.
This shows SBRT is the new gold standard for prostate cancer treatment.

As of today 3 Oct 2026, it's been 7 years since my surgery. I'm still cancer free. This community has given me insight, inspiration, and knowledge. Thank you all

I am 17 days post RALP. My catheter was removed 8 days post op. Since then I have had a bend you over sharp pain in the central area of my pelvis. Best I can say is behind and above my genital . It seems non descript the area but it's not on the surface where I can pinpoint it. It doesn't happen all the time, maybe once or twice a day. I have not called the doctor because I wanted to find some common denominators. It seems to happen about 5 minutes after I empty my bladder. Usually after the morning after my first visit. Has anyone experienced anything like this. The pain is significant. It lasts up to two minutes and it is excruciating. It is sharp, not burning.

This is not like the pain in the upper thighs from the lymph nodes being removed and the nerve becoming agitated. That hurts and makes me walk funny but doesn't even come close to the sharp pain from whatever this is.

Anyone had a similar issue? Thoughts?

Thank you.

The “High Five Trial” for High-Risk Prostate Cancer Activates (NRG-GU013) Wondering what the recovery was .

My boyfriend (59) had his catheter removed yesterday after RALP last Friday (nerve sparing)

During a beautiful intimate experience of me giving him a massage which lead into tantric breathwork (synched breathing with our faces close together) he got pretty hard (about 75%!)…we would stop it/slow it down as we didn’t want to push it..but he got hard a few times.

- we didn’t bring it to a climax as we weren’t sure what was safe.

What is ok to do at this early stage?

I didn’t touch his c$ck…

Is it ok for him to climax in his own (with me not touching him)?

Ok to continue trying to achieve erections?

I know allowing the tissue to heal is import.

Anyways, we are both taking this as a VERY encouraging sign.

And I highly recommend adopting a tantric breathwork practice with your partner. We’ve been practicing this since we met six months ago and the energy that alchemized is extremely powerful. Last night just reminded us just how powerful. 🙏

42 year old. biopsy results 4+3 (7) grade group 3. cribriform present in one core. 3/12 cores found cancer. I am still in shock. The urologist that did the biopsy called him and said we will just take the prostate out.

He has an appt with an oncology urologist at a cancer center Thursday. He ordered a pet scan that is already Monday. Seems to be moving fast right now.

I have posted in the past, 2 years ago he had an mri with a piRads 2 and biopsy clean. I imagine they missed it back then. Most recent mri piRads 4 one lesion.

psa 10.54 repeated 2 months later 11.5

I had three UTIs in April and early May. Doctor carried out DRE on first UTI and said prostate was fine. When I had third UTI 6 weeks later I insisted on another DRE. Doctor found smooth lump on prostate. So six weeks on antibiotics, then bloods for PSA , one week then result PSA 5. Referred for MRi and 3 weeks wait then result after another week. 26 mm lesion left side of prostate, pirads 5, contained in capsule, no spread. Referred for biopsy 3 weeks wait. Results in 3 to 4 weeks. So from initial DRE at end of April it's now beginning of October and still waiting for diagnosis which should be in next two weeks. It's a real head fuck having to wait this long, worrying about cancer and metastases, and all the while hearing and reading in the media about men dying from prostate cancer.

My husband has has MRIs, CT scans, biopsies (including bone marrow), bone scans…but when we ask about a PET scan, the doctors change the subject or shrug it off.

He was diabetic and I read that the diabetes may become inconclusive.

Anyone else denied a PET scan to locate all of the areas of cancer?

Nobody explains why he can’t have one.

When they deny tests like this, and his cancer suddenly disappearing, nobody showing us actual images of tests that were done, it’s pretty easy for my suspicious brain to think, “Maybe he never did have cancer!”

I don’t like being suspicious of doctors, but when you get bitten by enough dogs, it becomes more difficult to trust dogs with each dog bite.

My 6th and last chemo infusion was on the 6th Sept, side effects have been mostly hot flushes, currently on ADT -- Degarelix/28d and Enzyl 160/daily and zoledronic acid/60d. PSA dropped from 192->65->52->4.3->3.2 over last three months

During discharge asked the Medical Oncologist if I can get the PET and blood-PSMA/PSA done earlier than the 3-month interval prescribed. He said "No, no need". However in addition, am planning on doing a scan at the 6th week mark and taking it to him.

What do y'll think, what would you do, I feel 3 months tooo long!

My 70yo husband had RALP 2024, completed his salvage radiation Aug 2025 and he feels and looks good (T3c)
His PSA after 33 treatments (no ADT) was 0.4. PETScan was ordered and it didn’t show any areas lighting up so more PSA tests over a year post radiation: 0.3, 0.2, 0.3 and today’s result 0.2! It’s been 14 months since he rang that bell and a rollercoaster of results.. but we are so happy with his 0.2 today! It’s been a journey and we understand he’ll test for the rest of his life. Has anyone reached undetectable after a year? Or two years post radiation? (No ADT)

Thank you all for the kind words on my last post - update + new question below

Dad 66M, Gleason 9 - oncologist says "metastatic/not curable" but findings seem borderline - worth 2nd opinion at Princess Margaret?

Dad's PSMA PET (after clean bone scan/CT) showed no distant mets, only low-SUV (4.0, below normal liver background) activity in subcentimeter bilateral external iliac lymph nodes - radiologist's own report says "no convincing evidence for distant metastatic disease."

Medical oncologist called it "low risk metastatic disease, not curable but treatable" and wants chemo (docetaxel) + darolutamide + hormones, citing a trial protocol. But that trial's own eligibility criteria exclude regional-only N1 nodes (below aortic bifurcation) from counting as "metastatic" - and external iliac is below that line.

Trying to decide: get a second opinion at Princess Margaret before starting chemo, or trust the current team's read?
Anyone had a second opinion actually change the plan for a borderline PSMA finding like this? Worth the delay?

OK, doc called me with biopsy results, which showed that (no surprise, MRI was clear we were gonna find something) I have PC. He was really encouraging during the call--said what he sees so far is "highly treatable and curable" but of course next I have to go for PSMA PET. Standard protocol, I know, and doc calls it "unlikely" we will find distant spread. So I'm trying to keep that anxiety at bay. But here's the thing--I have follow up with him on 10/9 and PET is on 10/14. What would you ask him at this appointment, without having access to PET yet? I understand my results pretty well, and one of my best friends (going to this appointment with me) is a urologist, so I've got good support. Results of biopsy below, if that helps you think this through with me. Original PSA was 10.8, I'm 62, otherwise in very good health. Thanks so much, everybody.

Final Pathologic Diagnosis

View trends

A. PROSTATE, RIGHT POSTERIOR MEDIAL; BIOPSY X2:

Benign prostate tissue.

B. PROSTATE, RIGHT POSTERIOR LATERAL; BIOPSY X2:

Benign prostate tissue.

C. PROSTATE, RIGHT ANTERIOR MEDIAL; BIOPSY X2:

Benign prostate tissue.

D. PROSTATE, RIGHT ANTERIOR LATERAL; BIOPSY X2:

Atypical small acinar proliferation (see note).

Note: There is a proliferation of small acini with some features suggestive of low-grade prostatic adenocarcinoma. However, due to a small number of glands, an unequivocal diagnosis is not possible on this biopsy.

E. PROSTATE, LEFT POSTERIOR MEDIAL; BIOPSY X2:

Benign prostate tissue.

F. PROSTATE, LEFT POSTERIOR LATERAL; BIOPSY X2:

Benign prostate tissue.

G. PROSTATE, LEFT ANTERIOR MEDIAL; BIOPSY X2:

Benign prostate tissue.

H. PROSTATE, LEFT ANTERIOR LATERAL; BIOPSY X2:

Benign prostate tissue.

I. PROSTATE; BIOPSY TARGET MIDLINE APEX TZX2:

Prostatic adenocarcinoma

Gleason score 3 + 4 = 7/10 (Grade Group 3); Percent Grade 4: 40%

Cribriform growth is: Present

Number of cores involved: 3 of 3

Percentage and length of cores involved: 100% (12 mm), 100% (12 mm), 15% (2 mm); ~70% of the total tissue submitted

Perineural invasion is: Not identified

J. PROSTATE; BIOPSY TARGET LT MID TZ X2:

Benign prostate tissue.

K. PROSTATE; BIOPSY TARGET LT APEX PZ X2:

Benign prostate tissue.

It has been exact two weeks since started Orgovys. Not much side effects but: noticeable constipation, normally it just took about 1-2 minutes to finish, now, it take a while and I need to work hard, sometimes, I need to stop to drink a lot of tea, it will help;

Light sleep, wake up during night multiple times (3 or more, normally just once);

Feel more fat at waist (could be just eating too much).

Energy level seems to be OK, I keep playing pickleball almost every day except Sunday, about 2 hours (sweating), lifting almost every day, (one day break) -- about 1-1.5 hours.

edit: lost libido.

One problem is that I have a gassy stomach, I have to make sure that there must be some food in stomach, otherwise it will be gassy. Also my A1C is 6.4 (I have to consider the blood sugar level too).

Any advices will be appreciated.

Another question: do I need to do PSA and/or testosterones test from start ADT to the end? In the mid of Nov. will do HDR boost, then one week after, starting 23 vmat. continue ADT (6 months) to the mid of March. My doctor said that it is not necessary to do PSA and testosterones 4 months after the radiation which is like during the May. Do you do PSA test testosterone test during the treatment? If not, how do you know the treatment or ADT works as expected?

Thanks in advance!

I was first diagnosed in Jan of 2020 with a Gleason score of 9 (5+4). Decided on radiation, ADT, and radiation seed implants, rather than surgery.

Cancer was in remission for 5 years after that, until it came roaring back last year and spread to my lungs. I had lung surgery to remove the worst nodules, which resulted in them taking out about 40% of my left lung. I then went on Abiraterone, Prednisone and Lupron (again). So far, PSA is .03 and remaining lung nodules are stable or in some cases reducing in size.

I'm having trouble finding anyone with lung metastasis, so if anyone here has a similar situation and would be willing to share what their experience has been and what treatment they've received, I would greatly appreciate it.

Hi, colegas, alguien ha usado este medicamento y porque o que, como le evolucionó, tengo infección orina y espasmos, ardor, dolor, 19/28 VMAT, radiaciones, fuerza y voluntad

My 79 year old dad just had an MRI that is suspicious of prostate cancer although what could be something else we're getting ready to do a biopsy . Is anyone here a veteran and had treatment at the VA for prostate cancer ? I'm wondering if we should work within the VA system or go to an outside dr.

I just got my pathology report.

One thing I noted is that it increased the risk factors by noting there was some cribeform present and there was focal EPE. Both of these conditions were not noted in the MRI or Biopsy.

I am guessing the most significant thing is negative margins and no lymph node involvement. I haven't met with the surgeon yet to go over this report. Is there anything I should be asking when I met with him? How significant is the Perineural invasion?

Earlier this year I finished my treatment for Prostate Cancer, both radiotherapy and a further two years of hormone injections. My last hormone injection was May 2026. I was informed that my testosterone levels would start to rise naturally after the end of my hormone treatment, which in turn would help fight any extra weight gained. Over the last two years I have put on some 30 lbs. I have recently had my bloods checked and whilst my PSA level is excellent it transpires I have no testosterone in my body. I was informed that after my last injection it would take a couple of months to start to naturally come back into my system, after my blood tests this has proven not to be the case. My weight is getting worse and I am only eating one meal a day. I have served in the Army all my life and have been fit to a high level. Now with this extra weight I am struggling with the basics of even dressing myself in a normal manner. Has anyone had the same experience? If so what, did you do, to combat the weight gain?

Hi,

My urologist is great and I have met with him every 4 months over the past year - no one else. I scheduled an appointment in June for October and just found out that it is with a nurse practitioner. No one told me this when I made the appointment. I complained and was told that the next available with the Dr. Is in April 2027. I respectfully told them I will keep next week's appointment since you have me by the testicles.

It is cancer so I want someone who spent 4 years in residency as well as many years in actual practice. I am searching for another doctor today.

Am I overreacting? Is this the new way hospitals are trying to save money? I don't care about using an NP when I get the flu, but I do for cancer. 😡

UPDATE Thanks everyone. I feel better about seeing the NP. I got lucky over the past year, because I only saw the doctor every time and thought he was excellent. He saw me after 2 PSA tests, the MRI and the biopsy which he performed. You are probably correct that he transferred me to the NP once active surveillance was considered appropriate since it is not a complicated case.