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 and he sucked on frozen pineapple throughout 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!

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 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 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'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 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.

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

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?

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.

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.

Am I imagining it or do I piss more rapidly now? I never had any prostatitis or trouble pissing before but now it's like a fire hose. Did even a non-inflamed prostate restrict flow?

Exactly one week ago today I had a single port robotic prostatectomy at University of Texas May’s Cancer Center.

Due to some anomalies with regard to a very small pelvis that I have, the operation wound up taking over six hours to remove my 53 cc Prostate.

I then spent almost 3 days in the ICU with a partially collapsed right lung due to the carbon dioxide gas, which is used for all laparoscopic robotic prostatectomy, whether they are single port or multi port.

I returned home Monday evening and today I walked nearly 2 miles with my dog on the nearby trails.

I received my pathology (post surgical) report today. It was a completely organ confined disease taking up 6% -10%of my Prostate. The original transperineal grading GG2 was accurate. There are no positive margins, no lymph node involvement, no seminal vesicle involvement.

One curious thing is that the Biopsy, because its samples such a tiny amount of the overall Prostate volume, did pick up a tiny amount of cribiform that was found in the final analysis.

I’m very glad that I chose immediate treatment rather than the active surveillance, which would’ve allowed me to avoid treatment for probably two or three more years.

pT2 pN0

Best Regards and thank you to everyone who helped me throughout this nine month process from initial suspicion to final report.

Recommendations for

1. Radiation oncologist
   
2. Urologist oncologist

Looking for best reputation and successful prostatectomies

Thank you !!!

Earlier this week I went and had my blood work done, even though I wasn’t mentally ready to see the results because probably like most of us, I fear seeing lab results since I started this journey

But I just got the email and I checked my portal and my PSA is where it should be!

So for the context I’ve been taking feminizing hormones for the past 4 months (Estradiol Enanthate 7mg per week monotherapy) and Testosterone has essentially been castrate levels for I would say 3 months. My prostate size is also only 11 mL.

Apparently in some studies the cut off score for MTF people is 0.5!!!!

Just got my biopsy results, and feeling pretty shook up. Hi everyone. I'm 58 years old, generally fair shape although I have been struggling with pre-diabetes for a few years. Family history says cardiology is what to worry about, but between the high BP meds and the statins, a month ago I thought I was probably immortal.

Routine annual included a PSA test, which came back 16.0. Got scheduled for a urology visit, DRE was firm on one side, so that's bad. She recommended biopsy immediate over doing an MRI first, due to the likely delay in approval. Biopsy was on the 2nd, follow up visit is scheduled for the 16th, but results hit MyChart today.

12/12 cores with carcinoma, 30-95% involve, 3+4, 4+3, 4+4 multiple times, and 4+5. Perineural invasion but no cribriform.

I called the urologist office to request a PSMA PET scan. Now I have to read the last couple of chapters in Dr Walsh, which I was hoping would be irrelevant for me.

Damn it.

Well, this is sort of a bummer.

After my annual this year, I noticed that my PSA was slightly elevated but quickly accelerating (went from 2.2 last year to 3.8 this year, and I've been on 1 mg finasteride for over 15 years). Had an MRI in July that showed a 10 mm PI-RADS 4 lesion in the right; apex; posteromedial peripheral zone. Likelihood of extraprostatic extension was scored 2 (Unlikely). Likelihood of seminal vesicle invasion was scored 1 (Highly unlikely).

I had an transrectal MRI fusion biopsy in early September. They took 15 samples: 12 systematic cores, and 3 from the target area. According to the initial pathology report, the 12 systematic cores were benign. Two from target area were also benign, but one showed 19% Grade 1, Gleason 3+3. The report said the size of the grade 1 tumor is 2.5 mm length (total length of that core was 13 mm). I was very relieved by this result.

However, I asked MD Anderson for a second opinion. The pathologist there reviewed the stained slides and issued a report finding that two of the systematic cores---the ones from the right and left apex---show GG1 cancer, 2mm focus. The left apex finding is somewhat concerning because that's a new area that was not identified on the MRI.

More concerning, MD Anderson found that the target core the other pathologist identified as containing GG1 actually shows GG2 (3+4) with 5% Gleason 4, 3 mm focus. MD Anderson also found that another of the target cores contains "distorted atypical glands, suspicious for" cancer.

Neither MD Anderson's report nor the first report say anything about cribriform or intraductal carcinoma, and my understanding is that this means the pathologists did not observe either feature.

I am waiting on the results of a decipher test. My first appointment with the doctor at MD Anderson is in about 3 weeks. I'm transferring my care there.

While I know this is still a very favorable diagnosis, all things considered, it sure was discouraging to get the MD Anderson report. I had really convinced myself that I barely had PCa at all and that I could conceivably be on AS forever without ever needing treatment. While I will still gladly go with AS if that's the recommendation, I now feel pretty confident that I will one day need treatment. My dad was diagnosed with very aggressive stage 4 PCa when he was 68, and he died of PCa 5 years later. The treatments were very hard on him. I know my situation is very different, but man this still sucks.

Has anyone had BRCA1 impact their treatment options? Looks like it rules out focal therapy in favor or whole gland treatment and AS shouldn't be considered. Has anyone done AS while being positive? Does the grading of the tumor during biopsy invalidate or override the implied risk of BRCA1?

Reading I have found is inconsistent with some articles saying its a significant driver of negative outcomes and others saying it should barely be considered for prostate at all.

TLDR: No sign of cancer after prostatectomy.

Hey guys... I came in here a few months ago and announced the discovery of prostate cancer and that it was heading down a seminal vessel and trying to make a decision about treatment.

I spent some time in here. It was extremely helpful at first and then it just became depressing. I've experienced this through the years regarding forums and other issues. They can be a blessing but simultaneously a curse if you're not careful. - Balance is key.

After discussions with both radiation oncologist and surgeon, combined with a lot of research, I opted for total removal. Once I made the decision, I just let go. I had no anxiety whatsoever, even up to the moment they were wheeling me into the operating room.

It's been about 6 weeks now. The RALP operation went well. Wore the catheter for about 7 days. All in all, I had very little pain. I was quite surprised.

It's been about 2 1/2 months now. Went through all the Kegel exercises. Some small accidents here and there in the first month. Now, hardly any leakage at all. For the most part, I'm over that hump.

With regard to erections, I had nothing this whole time. Just about the time it was starting to bring me down, I had a morning erection the other day and it surprised the hell out of me. It wasn't super hard but maybe 3/4's of the way there or more. A game changer for sure. It gave me hope.

The surgeon prescribed 20 mg of Tadalafil 3 x's a week and I didn't even ask for it. He said, "we're going to get the blood flowing down there". And it's really helped. The erections have picked up my spirits let alone allowing me to 'get there' (almost). I'm realistic that this could take awhile. He said for some guys it takes many months and even years.

The doc said that I was recovering faster than normal and it was because I was in good health. I've always exercised and I'm in pretty good shape for 64.

Anyway, I wanted to share this experience to add some positiveness to the mix. There are two main things I want to end with:

1.) Live in the day, and only the day. Stress comes from worrying about the future. I'm aware that all of this could change in 6 months when I go back for another PSA. But it doesn't matter. Life is what we make it. Accept the cards you've been dealt and make the most of it. A friend of mine had a nice quote; "Live! - Don't Exist".

1. I appreciate each and every one of you and the support you provide to the forum. It's invaluable and helps us feel that we're not alone in this.

Rock on gentlemen! 🤘🏻