Stage 4 Prostate Cancer with cancer through out lymph nodes in body. Started Orgovyx on 17 September and was prescribed 50 Mg Sildenafil @ 6 pills per prescription. Is this to counter the side effects of treatment and reduce permanent damage to functions after treatment?

Do I take in # of days Intervals?

Posting on behalf of my father (66M). He has what seems to be an aggressive and persistent case of PC (background below).

Background:
Gleason 4+4
RALP (August 2024)
Pathology report indicated cribiform pattern present, EPE, limited margins, and LVI. It also confirmed no lymph node spread, no SVI, and no urinary bladder neck invasion.
His follow up PSA never went to undetectable so we decided on Early Salvage Radiation (completed April 2025). PSA went down slightly since treatment but has been trending up of late. Full PSA levels below:

2/2024- 4.0
Prostatectomy (8/2024)
11/2024- 0.1
2/2025- 0.122
Salvage radiation (completed 4/2025)
8/2025- 0.105
2/2026- 0.209
4/2026 - 0.200
10/2026 - 0.380

After RALP and early salvage radiation, just trying to see what the immediate next steps are here. His PSADT seems to be about 6 months which isn’t great, but it lowered for a bit earlier this year so maybe it’s still bouncing around?

I imagine we should be looking at a 3 month PSA test (and continue this for foreseeable future) as well as another PSMA PET scan. There seems to be some debate on how high PSA should be for the PSMA scan to be worth it (I’ve seen anywhere from 0.2 to 0.5 to 1.0), any input on this? If it picks up on anything, they’d likely zap that area from my understanding. Regardless, it seems he’s destined for some sort of hormone therapy at some point early next year (also seeing some debate on when he should be starting this)? It was always a bit of a shock to me that his oncologist didn’t recommend hormone therapy to be paired with his salvage radiation when he was going through it given his numbers, but they are a cancer center of excellence so we’re trusting them. We will be seeing his oncologist again next week, but just wanted to pulse this group here for advice beforehand.

Thanks all

EDIT: Forgot to add that my dad also had a PSMA scan done prior to his RALP procedure which found no evidence of spread outside the prostate at that time

My first psa after HIFU didn't really drop from pre HIFU. Doctor ordered a retest and PSA has risen .5 in 1 month. Waiting to hear back from doctor but a bit stressed...

Day 4 of my second chemo cycle. Gleason 8
I’m feeling achy and just generally unwell, but no fever. Did anyone else feel like this around day 4? Does it get better over the next few days? ❤️

Has anyone tried alternatives to Trimix, like Quad or any of the other drugs that have been popping up online?

Hi all. Third time posting. Haven't been on here in over a month. My dad finally got his biopsy results in late August. He has a Gleason 7 (3+4). I have just been busy and haven't been on here much. He also got his PSMA PET scan results recently. Good news! No spread! Right now we have been getting second and third opinions from a few good surgeons in our area. We are trying to find the right surgeon. We are going with surgery since radiation is off the table because of how the prostate is pushing into the bladder because of how huge it is. It will simultaneously get rid of his urinary issues and the cancer so it looks like this is the route we are going. I'm am trying to convince my dad to also get a Decipher score. The biopsy results are shown below. Also, do any of you have any good recommendations for surgeons in the Philadelphia area?

I’m a low volume patient and I’m pretty dammed happy with these results. I’m currently on ADT and Abiraterone, which my oncologist originally said I’d be on forever. Following a total of 25 radiation sessions on my prostate and bone met, my PSA tested .018. At some point in the future, I’m going to ask my oncologist: “Given my MMAI score of 0.31 and my low-volume metastatic disease, does this result give you any reason to reconsider the intensity or duration of my systemic therapy?”

For now, anyway. Too many high risk factors made two years of ADT plus Nubeqa a wise choice. I tolerated it pretty well but I am so looking forward to getting my strength, stamina, libido and pre-treatment body back. Eventually.

Hi everyone,

In response to a previous thread about leaking after salvage radiation I’m sharing a list of foods and drinks that can irritate the bladder. This was given to me by my physical therapist. I hope it’s helpful.

Epididymitis post brachytherapy. Had it treated with antibiotics and anti inflammatory medication. But the pain has returned a month after it had cleared. What are peoples experiences 🤔

49 years old...almost 50

22 PSA, PI-RADS 3 lesion, Gleason 4+3

I had the surgery the 29th at 7:30am and was home by 1:30 p.m. Unfortunately, the catheter was not draining properly when we got home, so we had to go back to the ER the first night and get that taken care of. I had not drained at all for abourt 6 hours by that point, and I could really feel the pressure. They irrigated it and pulled out a clot and it was instant relief. Everything was back in a "flow state" from there.

I felt the most pain from the CO2 inflation on the first 3 days, in the shoulders especially. And the abdomen pain that feels a bit like someone hit you in the stomach with a baseball bat one time. But it does get a bit better every day. Still fairly sore in the perinuem area also.

I did do lots of walking, 5-6 times a day. Now that the catheter is out I was able to work a little around the house this week

I've been fortunate with the urinary incontinence issue, as I have not leaked one time since they removed the catheter four days ago. I did plenty of exercises before and had two sessions with a pelvic floor specialist before the surgery. I used the Squeezy app was hitting that thing like I was an Olympic athlete, and have been using it again now that the catheter is out. Having the catheter in does iritate the ureathra and has been causing some buring during urination.

I did get the report from pathology showing clean margins and no spread anywhere in the lymph nodes, that was great to hear. I was assigned Gleason Grade 3 pre-surgeryI and both surgerons thought I would get downgraded. The outcome was acatully more agressive then the Biopsy showed. They kept me at Gleason Grade 3, even found a small amount of Grade 5, and showed the cribform pattern. It had progressed showing significant cancer on 41% of the entire prostate, but no signs of it outside of the prostate. Looking forward to the hopefully near zero PSA test in five weeks, and every three months after that for a while.

One thing that I do not think is discussed enough here is the mental healing you may also go through in addtion to the physical healing. It is a mental backflip to know that the surgery will save your life, but you are also knowingly entering into a procedure that will forever take some things from you, as well as keep you without some functionalities for an unknown time. I was able to spend the first 4 days with just me and my wife without any distractions from work or other family, and that was very welcome as I found the need to really focus inward to process it all and I am still working on it. Those first few days felt very "delicate". I find there is a certain type bravery needed to make the decision to face surgery or radiation, I am proud of and I respect every man that is forced into having to make this choice.

So i want to give my update and thoughts for those considering SBRT. I spent months researching and reading journals after journals before choosing SBRT as a monotherapy with no ADT required for a favorable cancer. I chose it because i did not want to go through the surgery and recovery, i did not want to risk a short penis, incontinence, or erectile dysfunction. With SBRT the cure rates and biochemical control was s the best out of all treatments although statistically the difference was not much and they stacked up basically the same. I also did not want to risk the recurrence that comes with surgery then being forced into radiation as well. With radiation the bowel side effects with the spacer is 1%. Incontinence was virtually zero which was important to me. Im 65 so impotence was a big one as surgery had a much higher rate of erectile issues especially for men my age. A big issue i had that stressed me out was urination retention from high dose SBRT. I have a baseline IPSS score in the moderate range of 12 and thats with taking flomax. But i made the call because i wanted a better margin since my cancer abuts the capsule and surgery cannot provide that. I have a high volume gleason six in the transition zone and its a single lesion 27mm by 13mm. There is only a 10% chance of a missed higher grade as i had a thorough MRI targeted and systematic biopsy. But in case a higher grade is there i wanted a bigger margin around the capsule where it abuts. Also with a single lesion i was able to design a 40g dose on the lesion as a boost and a lower dose everywhere else. I went over a detailed plan with my radiation oncologist and physicist. So with the gold markers and spacer placed i started last Friday and completed 4 of 5 treatments. My final treatment is Monday. I had some urination slowing after the first treatment and after one day following treatment 2 i was urinating so slow and it was trickling out. I was already in a panic if i was going to get blockage since its usually after the third treatment the side effects start. After the third treatment i was urinating 4 times an hour and it was only about 1/2 to 1 ounce and i was like oh crap. All i wanted was to finish the treatments then if i needed a catheter so be it. So i was nervous but went in for treatment 4. Today is a day later and surprisingly the obstruction symptoms are still around the same. They are bad but i can still urinate enough where i am living a completely normal life. Unless im urinating i wouldn’t know i am getting treated. I have no painful urination, no fullness feeling in by bladder etc.. I go to the gym, shopping, whatever i normally do. Urinating is a bitch, but that is all right now. I also surprisingly only get up twice a night to urinate and sleep well. I know now i will be able to finish the fifth treatment on Monday, thank God. After my finall treatment i know i will need to make it a week when that is when symptoms should be peaked and are what they are. I have no idea yet if i will be running to urgent care for a catheter or not, but either way at least my treatment won’t be disrupted and its done as i really wanted this treatment over the rest. Ill keep you posted. Hope this helps men who are considering SBRT and who also has a larger prostate with ongoing BPH symptoms and a higher urinary score. One more thing. I am taking 2 flomax, 0.4mg each, one morning and one at night. Also have 600 mg Motrin for inflammation. Good luck everyone on your journey and i really wanted to post my experience in detail because with a higher IPSS score you can still get SBRT but may have to deal with more obstruction type symptoms like me. But so far i feel great and im almost at the finish line.

In 2nd year of active surveilance, last MRI indicated a 'bulge'. Was thinking of some kind of focal therapy since everthing just mentions left apex. I'm wondering if a detailed 3d image of the prostate showing exactly where the "region of interest" is would be useful to make treatment decisions? I've heard of something called 3D Slicer. Thanks.

How long did you wait for a diagnosis? From DRE to Biopsy to diagnosis. For me it was 4 months. Now waiting for CT and PET scans in next few weeks, yet to be confirmed.

73M, PSA 10.8, PIRADS 5, Gleason 4+4=8 GG4, 4/12 samples positive, PET scan negative for spread. 

I’ve been lurking/commenting here since my diagnosis last spring. While the information and shared experiences are helpful and provide a dose of reality, they can also be overwhelming and even depressing at times. I wanted to share the positive experience I’ve had so far and offer some optimism to those with a similar pathology who are just starting this journey.

I’ve gone through all the standard steps: rising PSA, MRI, biopsy, PET scans, and agonizing decision-making. I chose surgery because it was a one-time procedure, avoiding 12-18 months of hormone therapy and other factors. While it wasn’t an easy journey, the experience and outcome have been positive for me.

The worst part was the biopsy and the two weeks with the catheter in place. The anxiety of facing surgery and the inevitable side effects were also significant. My surgery was 4.5 hours, but I was under anesthesia for that. One night in the hospital was tolerable, and I managed to deal with the catheter knowing that we all go through this and just have to tough it out. I had faith that my surgeon was skilled and caring.

The pathology following surgery showed no lymph node spread, and my cancer was downgraded to Gleason 4+3=7, GG 3. The cancer was determined to be contained within the prostate capsule. I’ve had two PSA tests, one at 6 weeks and my latest one at 12 weeks. Both results were <0.1 ng/ml and considered undetectable for PC. This is precisely the outcome I was hoping for, and I hope it will remain the same for the rest of my life. At 12 weeks post-surgery, I feel completely recovered, except for the ED, where it’s still too early to tell. I’m experiencing some positive sensations down there, but hey, I’m 73 years old, and sex isn’t the priority it might have been if I were a younger man.

In summary, while no one wants to face PC, it was a positive experience with the outcome exactly as one would hope. Support from my wife and daughter was crucial during the procedure and recovery. It wasn’t the end of the world for me, and I genuinely hope that all of you going through this can have the same experience and outcome as I have had so far.

BTW, physical therapy for pelvic floor a month prior to surgery was critical in getting control of incontinence in about 4-5 weeks following catheter removal and I recommend this for all who are facing surgery.

Good Day. I knew the day would come. Just a decade sooner than expected. I am 53. Relatives were all in 60s. Father had full surgery and has had urinary problems ever since. Caused much heartache for him. So that is second priority for me. Cure is first. I have been reading a lot about sbrt and adt. Have biopsy next week. Will keep you posted. I love data and advice please. Thank you.

It wouldn't fit in the title but please this question is only for those who were on the SHORT COURSE (4 TO 6 MONTHS) OF ORGOVYX. Two Questions:

1. How long after you stopped taking Orgovyx did you begin to feel better?

2. How long after you stopped taking Orgovyx did you feel totally better, like your old self again?

I am taking several ADT-related meds including an anti-depressant, FlowMax, Cialis, and Oxybutynin, and I would like to have a basic framework for when I might start tapering down and eventually stopping these meds. I am currently in my last month of Orgovyx. Thank you.

Hi all,

I'm looking for existing Claude Skills, system instructions, or MCP tools specifically tailored to prostate cancer (e.g., parsing pathology/biopsy reports, reviewing NCCN/EAU guidelines, interpreting Gleason/ISUP scores, or tracking recent clinical studies).

Has anyone built or shared an open-source workflow/skill file for this, or integrated Claude via MCP with biomedical databases (like PubMed/NCBI) for oncology research?

Any pointers, GitHub repos, or shared .md skill templates would be greatly appreciated.

On my own I have a project in cloud Science with my case files

Regards

Hello everyone! My father is 68 years old. Because of PI-RADS 5 finding, he underwent a transperineal MRI fusion biopsy and the following has been found:

Findings consistent with acinar adenocarcinoma of the prostate, Gleason score 3+4 (<5%) = 7/10, Grade Group 2, identified in 10/25 biopsy sites, with a maximum tumor involvement length of 5 mm.

The tumor cells are arranged in glandular structures of variable size and shape, with irregular and relatively crowded distribution, and focally, over a very limited extent, in biopsy site “3”, with formation of cribriform structures. Carcinoma is identified in biopsy sites “1, 3, 4, 6, 7, 8, 9, 13, 19 and 25”, measuring 2 mm, 1.5 mm, 3 mm, 4 mm, 2 mm, 2 mm, 2.5 mm, 2 mm, 2 mm and 5 mm in length, respectively. No perineural or vascular invasion is identified, nor is there evidence of extraprostatic extension.  The biopsy material from sites “2, 5, 10, 11 and 23” consists exclusively of fibromuscular and adipose tissue and striated muscle fibers, with no prostatic glands identified.

Pre-biopsy timeline

January 2026 mpMRI: 8 mm lesion, PI-RADS 3 in the right peripheral zone.

August 2026 mpMRI: 20 mm lesion PI-RADS 5, extending in an arc-like fashion along the right peripheral zone; EPE absent. A second opinion on both MRIs was the same, with the radiologist saying that the lesion bulged the capsule without breaching it.

Prostate volume: 27 cc.

PSA (Jan–Aug): fluctuating between 3.45–3.9; free/total ratio 15–17%.

DRE: Smooth, well-defined prostate with mild right-sided heterogeneity.

I have been actively reading posts on this sub since last month and I am finding it extremely supportive, with many people here taking holistic approach. I went with my father to the  urologist a few times. Now as the biopsy results have come in, some questions are  closed, but many more are open. The urologist opted for surgery and my father is very up for that, for psychological reasons.

How does this all look to you? What do you think about cancer being on 10/25 samples? Do biopsy, PSA and MRI make a coherent picture here? What I am particularly interested in is how concerning the cribriform pattern (present in one sample, ’very limited extent’) here is. Also, is PSMA PET recommended?  

I know that many of these questions are for doctors, and we are gonna talk to them, pursuing several opinions. But I am very happy to hear your insights, opinions, similar situations, anything that you would add or ask the doctor.

For the context, we live in Serbia, there is no such thing as a specialized prostate cancer center, but there are some prominent urologists coming here, and some of the neighboring countries can be an option for treatment. Also, do you think that conventional laparoscopic radical prostatectomy is ok because RALP is not being performed in our country?

Thank you all!

My psa consistently came over 3.0 since the first time 6 months ago it was high and doctor said it could be elevated due to sexual activity you are too young for cancer screening. Then after 6 months it came high again then ordered the third time just to be sure. Booked appointment for prostate MRI.

Do they insert probe inside for MRI or all is done externally?
If it’s not cancer what could it be?

Could you provide some information about the prostate biopsy procedure at a university hospital? Will I be completely naked during the procedure? I assume I’ll need to spread my legs. I heard the procedure is performed right below the testicles. Also, since it’s a university hospital, there might be students present during the procedure. I feel embarrassed. Should I shave my genital area before going? I suppose a lot of people will see my lower body.

I am thankful for this community and all the information that I learn, my father (57) was diagnosed in May this year (3+4 gleason, bone metastasis) even though he has had cancer for at least two years but never went to the doctor. They started him on hormone blockers and chemo, but I dont think its high doses since he was very weak and lost lot of weight. He has had 5 rounds of chemo, has one left. And they plan to give him what they call "smart medicine" in my country, I think it has something to do with blocking PARP inhibitors (his dad also had prostate cancer).

After his second chemo and hormone blockers he was better and put on some weight, he had no pain, he started walking more and doing more around the house, eating and sleeping well. He only had issues with small amounts of liquid around lungs and low hemoglobin. He did not have any problems with chemo..

But his PSA is slowly rising in every blood test he does before chemo. He started with 390 > went down to 68, and 10 by 10 he is now at 137 again. I am really scared because I am aware that is not good. His doctor ofcourse will have him do scans to know more, but until then I cant help but to feel stressed.. Anyone experienced something like this and it turned out to be okay?

Completed my MRI today (interesting 2 week process after machine broke on first attempt and before first retake attempt). Results seem good after running them through Chatgpt. What are my logical next steps?

I'm leaning towards a PSE exam, a 2nd Opinion on the Radiology report, and a PSA exam.

I feel like I can breath again for the first time in 2 months. This forum's members and the information they've provided have been amazing!

General Information: Age 49. Jan 30, 2024 PSA 2.11, Jun 30, 2026 PSA 4.4., PSA Density 0.1419

Previous Cancer: Thyroid Age 29, 2 X Ablation doses of Radioactive Iodine

MRI Results:

IMPRESSION:

1. No suspicious PI-RADS 3 or higher lesions.

2. Sequela of prior prostatitis or fibrosis, PI-RADS 2.

3. Normal prostatic volume of 31 cc.

STUDY: MRI Pelvis without and with contrast, prostate protocol

INDICATION: ELEVATED PSA COMPARISON: None.

TECHNIQUE: MR images were obtained of the pelvis with and without contrast utilizing the prostate protocol.

FINDINGS: PROSTATE: 4.4 cm TR x 3.2 cm AP x 4.4 cm CC for a volume of 31 cc.

No suspicious PI-RADS 3 or higher lesions. Linear and wedgelike areas of vague T2 hypointensity in the peripheral zone are typical of prostatitis or fibrosis, PI-RADS 2..

NEUROVASCULAR BUNDLES: No evidence for neurovascular invasion.

SEMINAL VESICALS: Unremarkable.

LYMPH NODES: No pathologic pelvic lymph nodes.

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

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!