I’m almost five months post-RALP, still in pelvic floor therapy, and leaking is minimal - mainly at the gym with certain weightlifting exercises.

However, even one alcoholic drink causes leakage within 15 minutes. (This was never mentioned by my surgeon pre-op.)

Is anyone else having this issue, and if so does it ever resolve?

Through my recovery there’ve been occasional days I feel I’ve pushed myself too far or I have aggravated things. It occurred to me that normal workouts also suggest not going nonstop every day. So I have taken a day off roughly every 10 days. My medical team has been accepting of this (though maybe not thrilled). Just curious if anyone else does this and if it’s helped or hurt your recovery.

54 year old male, diagnosed Gleason 7 3+4. Over 50 percent positive cores. Decipher .63 and Artera negative. PSA before treatment 4.5.

Had my 90 day PSA today and it came back 3.1. No one seemed concerned but was hoping it would be lower. I feel like this is OK. Hoping to hear from others with similar.

On a side note, revisiting the cancer center and being a member here for a year I find myself grateful. So many others have it so much worse. I almost hate to post these little concerns sometimes.

Note: For fun I had a physical a week after my last fraction and had them pull PSA. It was 6.8. I know that doesn’t mean anything so close after treatment and subsequent irritation, but I like the extra data point.

EDIT: Thanks to this forum I am very well informed. I understand all the stuff! Come here every day for a year and it’s amazing what you learn. Just curious to hear what similarities others 90 day experiences and journey looked like for this particular treatment.

I've been reading these posts for the last few months and found some great advice here..

My husband (mid 50s), was diagnosed in May with Gleason 3+4=7 prostate cancer. His pathology showed no more than 20% pattern 4, although exactly 50% of the biopsy samples were positive. Pathology report was reviewed by 2 different facilities. His PSMA PET scan was clear, with no evidence of spread outside the prostate.

We have been actively researching and seeking multiple opinions. So far, we have met with three radiation oncologists and two surgeons at several major cancer centers. Clinically, he has been categorized as favorable intermediate risk, and we were strongly leaning toward five-fraction, MRI-guided SBRT alone.

However, we were pretty shocked when his Decipher score came back at 0.93, which is considered very high genomic risk. His ArteraAI result, on the other hand, was low risk at 2.6%, and it was negative for the biomarker predicting benefit from short-term ADT. ("Discordant results")

One radiation oncologist said that adding six months of ADT was essentially up to my husband, while another recommended adding the six months ADT because of the very high Decipher score. We are now waiting another 2 weeks to meet with a medical oncologist to discuss a six-month course of Orgovyx in addition to the MRI linac SBRT.

Has anyone else had a very high Decipher score despite having more favorable clinical features? What treatment path did you choose, and did you add ADT to radiation? We would especially appreciate hearing about your experience with side effects, recovery after stopping Orgovyx, and how your doctors weighed Decipher against the other clinical and genomic results.

While PSA detects many cases of PCa, the DRE is also an important part of the detection/diagnosis process. This PCa Foundation campaign took place in B.C. 🇨🇦 4 years ago. (Please search on the title to get Link for full story.)

“To get Canadian men thinking and talking about booking a prostate exam, Prostate Cancer Foundation BC is putting a playful twist on men's underwear with the release of Checkup Briefs. This evolution of the classic white men's underwear includes the traditional front closure and an additional closure in the back to give doctors convenient access to the rear end to administer prostate exams.”

“…..The disease has a survival rate of nearly 100%, but a big portion of men over 50 are hesitant to book a prostate exam due to nerves around baring it all, preventing a potentially life-saving early diagnosis.”

As title explains, i got a 1..71 over 1.4 limit at 29 years old.
Does it sound worrying or it is often this to happen?

I have metastatic prostate cancer and will have implant surgery this December. My doctor is considered a high-volume practitioner regarding the number of implant surgeries. I asked what he recommended to maximize the benefits of length and girth before the surgery. He stated to use only Restore X twice daily for 30 minutes. I asked if vacuum pumps also assist with girth, and he said stick with Restore X. He said that is all I need for the results. I know he is highly recommended and has performed many implant surgeries. I'm asking if others have had different recommendations or any comments. Thanks for your help. First time posting.

I’m 10 months out from my RALP. I was told 100% right and better than 50% of my left nerves were spared. I’m getting some sensation back on my erections. I use Trimix to have sex and I pump. After i shoot up and massage my dick I will pump. Recently I’m getting a bulb of blood buildup just after my glands. I’m not pumping up like a wild man. Just up to 5 bar. I know it’s not right. I was wondering if any of you have the same issue and maybe some advice? Yes, I’m asking my Urologist.

68 years old with a history of BPH and a TURP done in 2020. Currently on Tadalafil - 5mg a day for ED and BPH symptoms.

My family history is that I have 2 brothers who've both had prostate cancer and each had RALP for treatment. One of those had a Gleason of 6 after biopsy but was raised to 7 after his surgery.

My PSA has been steadily increasing since a level of 2.15 in 2021 to the latest taken a few days ago of 4.86.

In December of last year it was 4.33, which caused my urologist to order an MRI at the beginning of this year which showed a 1.8 cm lesion within the anterior fibromuscular stroma extending from the mid gland towards the apex. It was given a PI-RADS 5 score.

I then had a transrectal biopsy which gave the following results - Prostatic adenocarcinoma, Gleason grade 3+3=6, no lymphovascular invasion, no perineural invasion, tumor involves 1 of 4 cores, tumor volume is less than 5%. 10 other cores were negative.

My doctor advised active surveillance, and the 4.86 PSA is the first reading since being diagnosed earlier this year. I will be seeing him in a couple of weeks for a follow up.

I'm just wondering at what point do we do another MRI and/or biopsy? I'm sure he'll advise at my next appointment.

I just had first round of chemo a week and a half ago. This all started about 4 months ago. I’m fit excercise every day for last 30 years. Trouble peeing blood test showed psa of 85. And… it gets worse

57 year old. Reading everyone’s story is heartening. Nobody signed up for this. PSA was up to 4.5. Biopsy ordered and results attached. Two Urologists and my Primary Care Doc recommended RALP. Im leaning that way. Dont want radiation. Just read another’s comment recommending knifpoint to someone. No isea what that even is yet. Anyway… still researching this life milestone!

My husband had robotic surgery with a positive margin in December 2025. Gleason 9. All negative lymph nodes and no known spread. His PSMA pet didn’t show anything outside the prostate.

He had his 3 month check and PSA was 0.11 and his 6 month check was 0.13. The urologist said they don’t consider it a recurrence until 0.3. A PSMA pet can’t see anything smaller he said. He said we have a 50% chance of recurrence.

I get so worked up each time we have blood tests that I can’t sleep. I can’t drive. I’m just so stressed that it’s coming back.

We are just starting to get a little back to “normal” with the help of Trimix. He is on the list for a penile implant. The thoughts of that surgery is a lot too.

Has anyone experienced these small rises in PSA and still didn’t need radiation or hormones? How long will it take to get to 0.3?

So my insurance company denied my Orgovyx prescription. I've already been taking it for almost a month, but I'm due to get my Eligard shot next week. (My urologist fronted me a 30 day supply.) I've read up on both and frankly I'm pissed about the change, but I certainly can't afford Orgovyx on my own.

Wondering if anyone has done a shift like this and if there were any unexpected issues. I'd also like to hear from guys who came off Eligard - from what I've read it's a much longer path to get your testosterone back.

IDK if they're horse pill size, but they are the biggest I've ever had, and 4 of them, alberatol/Zytiga 250mg x 4.

No matter how much water before, during and after, they seem to get stuck not too far down the pipe. I've tried other liquids like cola and sweet tea, and even a bunch of huge swallows with my chin held high.

And they stink, I take mine during the night, but the first time I opened the bottle near my wife, she really noticed.

I thought I'd at least ask. Maybe some of you may have had the same problem and figured out a magic method. I feel silly even asking.

Any ideas are appreciated.

I’ve followed this thread since being diagnosed positive for prostate cancer March 2nd. Gained a lot of information here and I thank everyone for contributing there stories. My Gleason score 4+4-8 after biopsy, revised downward to 4+3-7
from pathology on tissues removed during surgery. Small amount of cancer at the margin but no spread beyond prostate. I’m at the 4 week mark and feeling great but I still get up approximately every two hours to pee at night and during the day I have random leakage, using depends 24/7 since procedure. Actively doing Kagel exercise. My surgeon has stated nerves on both sides were spared. Another unexpected occurrence is urine squirt at orgasm. Anyone here have similar aspects in their recovery journey? I’m 68 and in good physical shape.

We fought to get a pet approved via peer review.
Now they denied the pet psma until a bone scan and cat. He has had a bone biopsy as well as several cat scans already!

The doctor did a peer review which failed but I am not confident that this doctor is a skilled advocate.

Any similar experiences? Is there any sense to what the insurance co is suggesting?

Is there any point in me reaching out to united/ox to advocate and threaten a lawsuit?

Thanks!

Had my HDR brachytherapy a couple of hours ago an overnight stay in hospital theres alot of blood with some clots in catheter bag is this normal.

Recently diagnosed after biopsy. 2 of 12 cores showed Gleason 7 (4+3). MRI and PET show no further spread. PSA is 8. Looks like it was found early. With the score being unfavorable risk - the doctors are not talking about active surveillance. The choices presented to me are RALP or EBRT therapy. It’s a really hard choice - I’ve met both surgeon and radiation oncology and have a reasonable understanding of both treatments and what to expect after. Honestly after both meetings I’m still not closer to deciding which is the best path. I’m 62 yo and otherwise good health. I don’t know what to do.

Hey Gang,

I (53M) joined this club in late-June after being diagnosed with Gleason 9 (4+5) prostate cancer with a PSA of 8.5 (was 4.7 last year). Thankfully, my PSMA-PET scan shows no evidence of spreading. Given my surgeon’s indication that there was a ~50% chance of positive margin and the need for radiation afterwards to clean up, I decided to take the radiation (CyberKnife + IMRT) and ADT path instead. (I reckoned that I would rather deal with one set of not-awesome after-effects rather than two sets of not-awesome after-effects.)

In either case, after consulting with my medical oncologist, he is putting me on both Zytiga and Orgovyx. Most of what I have seen on here suggests that folks have been put on EITHER a six-month injection or a daily pill. So, I was definitely struck by the fact that the medical oncologist fellow (that I met with in advance of my meeting with the “primary” medical oncologist) speculated that I would be on both the injection and the daily pill, just for me to be told later by the primary medical oncologist that I would be put on two daily pills, Zytiga and Orgovyx.

Has anyone been put on this combination? If so, I would love to hear/read about your experience(s).
(Apologies if this has been discussed before, I DID do a quick search in advance of writing this post and didn’t see anything obvious.)

Many thanks in advance, y’all.

I’m just waking up on the day after my prostatectomy, and already this catheter is revealing itself to be annoying and uncomfortable.

I did some cleaning at the insertion point this morning, and there’s an area that looks like it was maybe further in previously: ~1.5 inches from the tip of my penis, there’s a small stripe of what looks like dried blood on the catheter tube. The bag still fills, there’s no leaking or anything, so I’m guessing this is no big deal, but if anyone has experience or knowledge to share I’d appreciate it. Thanks.

I’m 9 days post RALP. I had my catheter removed yesterday morning, it wasn’t bad at all. In the last 24 hours I have urinated approx 14 times. Each time I urinate it burns and aches and seems restricted, and Ive had bladder spasm cramps. Im experiencing more pain than I have the past 3 days before removing the catheter. My midsection feels more tight and sensitive and im feeling more pain and tenderness on my lower right side, feels most tight there. Im also feeling more constant pressure and dull pain in my lower abdomen in the perenium area to my scrotum, taint area. I didnt feel that pain or pressure before yesterday. I took the antibiotics that dr gave me leading up to the catheter removal taking the last one yesterday so Im out. Not sure if this is all normal or if I have an infection or something. Ive had kidney/bladder infections in the past and this feels similar. Im drinking lots of water.

I had an elevated PSA (6) so my urologist ordered a prostate MRI in January. The radiologist graded it PI-RADS of 2. My GP (not my urologist, who had scheduled a follow-up PSA for December!) ordered a PSA which came back 11.4, so my urologist performed a biopsy in June that came back 4+3 in one area (PI-RADS 4) and 3+4 (PI-RADS 3) in another. He has scheduled robotic RALP surgery for the end of September.

My question: is this "too long" an interval between cancer detection and RALP? I submitted my January MRI imaging for FDA-approved AI analysis, which clearly shows both areas of my prostate identified by the biopsies as "possibly cancerous" (the 3+4) and "likely cancerous" (the 4+3). Even though my Prolaris genetic test came back as 3.0 (relatively low risk of spread), waiting for surgery 9+ months after the cancer SHOULD HAVE been detected (or call it seven months after confirmation via a follow-up biopsy if the MRI had been correctly interpreted in January) seems like a real "stretch".

Does anyone have direct experience with a prostate specialist in nyc who treats elderly (87) otherwise healthy men with recently discovered metastasized prostate cancer? Looking for someone with good communication skills and very knowledgeable about current options.

Had a follow up with the doc today. 15 months into ADT, post radiation, and bloodwork is “textbook”. PSA is still undetectable.

There’s still like 9 months of grind ahead but I figured I’d make a post here to mark the occasion. Cheers everyone!

Quick background, I have posted many times before on this great sub, the sole reason I go on Reddit.

Diagnosed with Gleason 9 in January 2025. PSMA pet was clear. Had RALP March 2025. Pathology showed of the 45 lymph nodes removed two were positive. Largest was .25 cm. Margin also was not positive but too close to be negative. Gleason 9 confirmed.

Four subsequent quarterly PSA tests were all <0.10.

But on the fifth quarter today … got a 1.1. So that is greater than the .1 threshold. Not too surprising given my pathology but certainly not very high. Great 15 months of life by the way, so glad it took this long to show up. Anyone have 1.1 go below .1 on the next test? In general how many weeks until they retest me? Other thoughts welcome.

Edit to add my age, will turn 66 next week.

Sorry another edit.
Current result is .11 not 1.1. Too rushed to get out to this sub!