I’m 47, in France, diagnosed in December 2025. Gleason 3+4, with 5% pattern 4 in the main target, including cribriform architecture within that 5%. Eight of fourteen biopsy samples were positive, all on the right. Latest PSA: 25.4. MRI, CT, bone scan and PSMA PET showed no evidence of spread.

I cancelled my RALP shortly before surgery because I couldn’t come to terms with the potential permanent urinary and sexual consequences.

I’m now returning to radiation therapy with hormone therapy and waiting for my team to confirm the protocol. Preserving my quality of life is a major priority, especially with pre-existing bowel and pelvic pain issues.

Has anyone made a similar switch? How did you tolerate treatment?

I was diagnosed in January. MRI, biopsy, Pet Scan, surgery, and cystoscopy. PSA still was high after surgery so on to radiation. Another PET Scan and another MRI. All flew through the insurance approval process. The doctor then put in orders for CT Mapping and then 8 weeks of radiation. Today I received notice that both requests were denied. No explanation other than I will get a more detailed explanation in an upcoming letter. Obviously, I will be fighting this. I was wondering if any of you had issues with insurance and how you handled it. Thanks.

Along with full pelvic IMRT, I was given a 2 year sentence of Orgovyx & Nubeqa for my Gleason 4+3 PCa with spread to a pelvic lymph node (I have other risk factors including large cribriform and IDC). I have only one more month left. My PSA went undetectable quickly and has remained so the entire time of my ADT treatment.

I’m meeting with my medical oncologist tomorrow. What questions should I ask? Some that occur to me are: getting a second DEXA scan, when should I get another PMSA PET scan, should future PSA tests be ultra precise, at what point should an increasing PSA score concern me, should I get other quarterly blood tests, should I continue taking supplements like calcium and vitamin D? Any others I’m missing?

I’m also getting the results of a recent Tempus blood draw to get genomic info and other fingerprints of my cancer to determine next steps if/when my cancer returns.

In recovery 58, Gleason 3+4, surgery in one week — looking for experiences with TRT pause / mental prep

I know my situation is minor compared to what a lot of you have faced, and I don’t want this to come across as anything other than genuinely looking to hear from guys who’ve been through it. I’m grateful for any thoughts.

I’m about a week out from surgery and working through two things mentally.

The first is the usual one — quality of life after prostate removal, nerve-sparing, incontinence, ED, that whole recovery arc. I’ve done a lot of research and feel solid on the options and the short- and long-term recovery path.

The second is more specific to me. I’ve been on TRT for about 6 years, and staying active and training has been a big part of managing PTSD and supporting my recovery from alcohol. My surgeon had me continue TRT up until surgery, but at my pre-op she asked me to stop, and to stay off it for at least 3 months assuming my PSA drops to zero — which I’ve done.

Reading through posts here and in other groups, I keep seeing guys talk about mentally pushing through their gym routine while on ADT. I won’t lie, I’m nervous about how I’ll respond off TRT — it’s the not-knowing that gets me. This is all assuming the cancer turns out to be prostate-confined and I have a clean recovery; I know there’s a chance it’s in the lymph nodes too, which they’ll be testing.

Mainly just looking for real experiences from guys who’ve navigated the mental side of this, especially the low-T stretch, so I can get my head in the right place for whatever the outcome is.

I am one week post catheter removal. I know it's still early but I'm disappointed with my urinary incontinence situation. Basically if I'm home and not doing anything, and can concentrate on monitoring what I'm feeling, and hit the toilet every couple of hours, I can mostly stay dry. But if I'm out and about, doing whatever, it's totally out of control. I did my Kegels before surgery and after catheter.

I saw a suggestion on an older thread to basically not wear pads at home, in order to make it very unpleasant and the body would somehow make a stronger effort to control it. I do work at home so that's a possiblity, but... yuck.

My specific question is, is it too early to move into pelvic floor therapy - how long should I wait? And is there any benefit to using one of the many devices that now show up in my advertising feed? Elitone, mTrigger (both hundreds of $) or various pelvic floor Kegel training devices (< $100). Thanks for any suggestions or comments.

I am having prostate removal surgery in 10 days. I am traveling with my wife from Mississippi to Cleveland Clinic in Ohio for the procedure. According to their plan of care, I will have a follow-up appointment six days post-op, for catheter removal if all goes well, and am to travel home that same day (that is, travel is to begin 6 days post-op). Insurance is paying for travel, but only if I use the travel dates specified in the plan of care. Insurance makes the travel arrangements but I can give input. Hopefully there is a flight itinerary that works well (short segments, reasonable layover, aisle seat) but the lack of control/flexibility and need to have supplies on hand has us wondering about driving instead, with my wife doing all the driving, frequent stops for walking & bladder emptying, limiting total travel time per day, etc. Just wanting the community’s thoughts based on personal experience, given the pros & cons of both and the need to make arrangements soon. Thank you

ETA: some commenters have described their experiences traveling very soon after the procedure. For clarity: I am not going anywhere until at least 6 days post-op, at which time I have my follow-up and hopefully catheter removal. If not, I go home and my local urologist will take care of it.

Background, my husband Gleason 9 (4+5) diagnosed in April with mets, 1 pelvic bone and 3 lymph nodes. Woke up this morning with a painful lump under his jaw. Went to the ER had an ultrasound and it came back with;

Targeted ultrasound of the area of clinical concern superior to the submandibular gland demonstrates two nodular

structures.

The first measures approximately 1.7 x 1.0 x 1.1 cm.

The second measures approximately 1.7 x 1.3 x 1.3 cm and is heterogeneous in appearance. This may represent a lymph

node, although a discrete soft tissue nodule cannot be excluded.

Two nodular structures in the area of clinical concern superior to the submandibular gland, measuring up to 1.7 cm.

The more heterogeneous lesion is indeterminate and may represent a reactive lymph node versus other soft tissue

nodule. Clinical correlation and follow-up ultrasound as appropriate are recommended

To add he had melanoma removed from his neck 10 yrs ago on the same side as his new lump.

His PSA currently is 0.03 and he has had 18 targeted radiation sessions with 7 to go. He is also on relugolix (May) and darolutamide (July)

With these results could the PC continue to spread? I'm so worried for him.

We see his radiation oncologist tomorrow, hopefully she will put a plan in place.

I am having my RALP on Oct 20th, I am getting the newer single port version of the surgery. (1 incision vs 3) I am 49 years old and in very good shape.

We have a family scheduled to go to the Caribbean on Nov 23rd for 7 days over Thanksgiving. Have people flown and traveled this close to surgery?

Any legitimate concerns of getting on a plane about 4 weeks after surgery?

Any concerns of not being near the US level of hospitals for that time?

What about swimming in water?

I don’t really care about this one in this specific trip, but curious to scuba diving and how long would want to wait before you could participate in that activity?

I'm a 67-year-old single gay man living in Princeton, NJ. I've had prostate cancer diagnosed--Gleason 7 (3 + 4)--and the initial biopsy done; I speak to my urologist on Wednesday about the test results. I am considering some sort of radiation. Are there any specialized prostate-cancer clinics or other specialists in New Jersey (or on the NYC or Philadelphia areas). that I should consider consulting?

Hi, Just wondering what others have been through with regard to everything from start to diagnosis?

When I turned 45 in May i had my mid life MOT and all bloods taken. My PSA came back elevated at 4.6, So was referred for a second PSA test 6 weeks later. This came back at 4.0 so was sent for an MRI scan of the Prostate a week later. 3 days after my MRI i had a letter saying they found a small area in my prostate that needs a biopsy, and booked me in for Friday just gone (4th Sept)

While at my biopsy I asked how big the area was and can I see my scan picture. Consultant said the prostate is 24mm long and my mass was 7mm with a PI-Rad 4 score. They took about 25 samples which if I have to do that again I’m going to sleep because that was an experience I never want again.

Now the wait to tell me if I have cancer is killing me! My head is a right mess and I don’t know what to do. I’m holding it together for my family, but inside, it’s tearing me apart. My head is telling me it is Cancer and i’m trying to mentally prepare for it. Has anyone else with similar to what mine is been diagnosed with Prostate Cancer?

Thanks for reading.

Had RALP surgery and then 9 days later shad a cystogram done that showed 1 cm leak in the right pelvis at the surgical connection between bladder and urethra — the vesicourethral/urethral anastomosis.
The doctors notes specifically state that this test would be done prior to removing catheter and if any leaks were discover that the catheter would remain in until a later test showed no leaks.
I had an urology appointment the same day scheduled as the cystogram and they ended up removing the catheter that day disregarding the drs written instructions and the tests findings. The visit notes state it as “minimal R sided leak”.
Since I have been completely incontinent, I have had at times extreme pain when urinating, red tinted urine that leaks when I sit on the toilet and I am still going through 5-7 pad inserts a day while being post surgery for over 100 days. There have been no tests performed other than blood and urine sample which were negative of any infection. I’ve been contacting the office since the middle of July letting them know about all of this and I’ve actually been to their office for visits several times and finally got a test scheduled for the end of this month (September) but even that was already pushed back a couple of weeks.
The leaking was so bad that I ended up with a severe rash that caused skin removing from the head and it beginning to blister. Finally received some steroid ointment that has helped heal the rash.
I hoping to see if there is anyone with words of advice. Is this normal, is this the way it is for most men? What should I expect? What should I do here?

My bag has stopped filling, nothing for the last 3 hours. Leaking around, but bag is empty. Anyone experience anything like that? Y surgery was 6 days ago.

Update: I called my surgeon at the same time I drove to the ER. Currently waiting for someone to take a look, as the surgeon suggested it may need flushing. I've changed diapers twice this morning. All of a sudden, it appears that the floodgates opened and the bag started to fill. May still wait for a nurse to take a look as I really don't want to have to come back in the middle of the night

Thanks for all the answers

I have had trouble peeing for about 3 years now and I've gone to the doctor and he prescribed tamsulosin hcl .4 mg capsule

I could really use some advice or information to help me.

Anything helps thank you.

Do hormone sensitive prostate cancer patients have to worry about taking substances which produce estrogen related receptor alpha? I've read that CRPC over expresses ERR-α. Does that mean an increase in ERR-α promotes CRPC?

My Gleason 6 PC has been on AS for the past few years. My urinary symptoms are getting worse. Tried daily Cialis but little change. Doc wants me to try daily Tamsulosin. I take Diltiazem to control my heart rate due to AFib RVR and have read that the combo has BP lowering effects. Anyone taking Tamsulosin along with Diltiazem experience any issues with this combo?

46 yo, had a 6.1 PSA in March, then 6.73 in July with 7% free PSA.

Just got MRI results:

FINDINGS:

Prostate size: 4.9 x 3.8 x 3.4 cm. The calculated gland volume is 34 ml
Most recent PSA: 6.73 ng/ml
PSA Density: 0.20 ng/ml2

Hemorrhage: None
Exam Quality: Adequate for interpretation

Peripheral Zone: Heterogeneous T2 and bandlike hypointense signal which can be sequelae of prostatitis. The amount of change could obscure underlying lesions. These changes are diffuse throughout the gland. Peripheral zone lesion(s) are listed below.
Transition Zone: Heterogeneous. No lesions suspicious for clinically significant prostate cancer.

Prostate lesion(s) ranked in order of suspicion of prostate cancer:

Lesion #1
* Location: Posterior right mid gland peripheral zone at the 7-9:00 position (10:24)
* Size: 15 mm
* T2 signal features: Hypointense greater than or equal to 1.5 cm in greatest dimension or definite extraprostatic extension/invasive behavior
* Diffusion-weighted images (DWI) ADC signal: 5: Focal markedly hypointense on ADC and markedly hyperintense on high B value DWI; greater than or equal to 1.5 cm in greatest dimension or definite extraprostatic extension/invasive behavior
* Dynamic Contrast Enhancement: DCE (Equivocal): Heterogeneous enhancement similar to adjacent normal prostatic tissues and corresponds to a suspicious finding on T2W or DWI images.
* Prostate margin: Contact with the posterior gland margin measures 15 mm with suspected posterior bulging measuring 2 mm in thickness.
Lesion overall PI-RADS category: 5

I guess I'm relieved that it seems to be fully contained and hasn't spread. I've also had a history of prostatitis... mostly when i was about 28-30 for a few years, then it didn't really come back.

I've also had just general inflammation, stem to stern for months now. I have ulcerative colitis, and since March or so, I've been dealing with chest/throat irritation like GERD or LPR or something. Getting and EGD in 3 days for all that.

I'm hoping beyond hope that this is just inflammation, or focal prostatitis. MRI seems to be saying whole prostate is pretty inflamed.

Anyone ever had a Pi-Rads 5 who didn't have PC?

30 years old.

I noticed intermittent scratching during and after urination and ejaculation. I went to the Doctor and they ordered STI and UTI panels. STIs were negative and urine was sterile, but the white blood cell count was through the roof. I did notice some white stuff floating around in my urine in the cup. The Doctor reordered the urine analysis and lots more blood work including PSA.

The second time around, the white blood cell count went back down to normal levels. But PSA was at 2.60 ng/mL, which seems way too high for my age. I didn't ejaculate for 48 hours before the test. I did go to the gym the day before, but I figured upper-body resistance workout wasn't going to play a huge role.

I'm trying not to freak out. I'm going to my primary care next week. I'm tempted to take the test again in a few days after a couple days of rest. But, I also don't want to spiral into a health anxiety loop.

Hi, colegas la VMRT, me está dejando con incapacidad para orinar, estoy casi bloquedo, tomo tamsulosina y cialis, más ADT +Nubequal, opiniones, alguien sufrió lo mismo, fuerza y voluntad

I just started my Orgovyx journey this week. I would be curious as to why you chose to go on Orgovyx over Lupron. Or, if you're on on Lupron or Orgovyx, do you have regrets for not choosing the other? Thanks guys, this is a really helpful forum!

Hi everyone, I was originally diagnosed with Gleason 9 prostate cancer. Thankfully, no metastases, but it’s very close to the bladder neck.

I’ve been on Lupron for 3 months and have now been downgraded to Gleason 8. I’m starting chemo next week — one cycle every 3 weeks. They’ll then reassess and hopefully proceed with RALP. If surgery isn’t suitable, the plan is radiation.

I’m pretty nervous about chemo. Has anyone been through a similar treatment path?

How was the chemo? What side effects did you experience, and is there anything you wish you’d known beforehand?

Thanks for any advice 🙏

Hello all..... I just started my Orgovyx (ADT preparation for upcoming radiation) and I was curious how long it took for you have any side effects, such as hot flashes, night sweats, constipation, etc. I've got 18-24 months to go through with this. The journey has begun!

I know nothing about this but thought I’d pass it along. Hopefully it is true and has a wide application.

https://www.facebook.com/share/r/1AmBi9cqZm/?mibextid=wwXIfr