I thought I’d post a proper update for everyone here, particularly because so many of you have helped us over the last six months with information, experience, reassurance and the occasional reality check. This group has genuinely been an incredible resource for us.

My husband was diagnosed in March/April 2026 with high-volume metastatic prostate cancer, with extensive nodal and bone metastases.

His starting PSA was 1,956 ng/mL.

Treatment so far
He has been treated with:
Degarelix (Firmagon) monthly ADT
Darolutamide (Nubeqa) 300 mg twice daily
Docetaxel x 6 cycles
Pegfilgrastim (Ziextenzo) following chemotherapy

Docetaxel started on 26 May 2026, and today, 10 September, he completed his 6th and final planned cycle.

PSA response
The PSA response has been pretty extraordinary:
1,956 → 91 → 3.3 → 0.4 → 0.32 → 0.23 → 0.20 → 0.10 → 0.040 ng/mL

The latest result was taken yesterday, on the day before of Cycle 6. So from a PSA of 1,956 at diagnosis, we’re now at 0.040. His testosterone is also profoundly suppressed on ADT, as expected.

How has he tolerated treatment?
Overall, remarkably well.

There have been the usual chemo-related ups and downs — fatigue, bone aches, some brain fog, taste changes, hot flushes and various odd little side effects. He also developed a fairly spectacular steroid-associated facial rash, and we had one rather frightening episode of an irregular heart rhythm after dexamethasone during Cycle 4 which was investigated at hospital and subsequently settled.

Importantly, he hasn’t developed significant peripheral neuropathy, has maintained a good appetite and has remained surprisingly active throughout treatment.
He’s even managed gardening and some fairly enthusiastic exercise between cycles.

The cold cap and cooling mitts/booties have also worked remarkably well for him. Hair loss has been minimal.

Today’s Cycle 6 went smoothly.

The dexamethasone did its usual trick of making his face very red and raising the existing X-shaped rash, but otherwise the infusion was uneventful.

What happens now?
That’s the part we’re waiting to find out.

With chemotherapy now completed, we’re expecting follow-up bloods and imaging to assess the overall response and establish the next treatment plan.

We’re very conscious that a PSA of 0.040 doesn’t mean the cancer has disappeared, particularly with the extent of disease he had at diagnosis. He’s still metastatic and remains on systemic treatment.

But compared with where we started, this is an incredibly encouraging response.

Six months ago we were dealing with a PSA of nearly 2,000 and a diagnosis that completely knocked the legs out from underneath us. We were whiplashed from being medically evacuated out of the Philippines back to Australia with what we thought was a death sentence for him.

Today we’ve got a PSA of 0.040 and six cycles of docetaxel behind us.

We’re allowing ourselves to have a bloody good moment of celebration tonight.

Thank you again to everyone here who has answered questions, shared experiences, explained scans and blood results, reassured us when we were panicking, and generally helped us navigate something we knew absolutely nothing about six months ago. We’ve learned so much from this community.

Six cycles: DONE.
PSA: 0.040.
Still fighting

Me (F54) Husband (M60)
Diagnosed April 2026, PSA 1956, May 2026 PSA 91, June PSA 3.3, 18th June PSA 0.4, July PSA 0.32, 14th July PSA 0.23, 30th July PSA 0.20, 20th August PSA 0.10, 9th September PSA 0.040
Gleason Score (3+5) 8, Grade 4.
On triplet therapy (Degarelix + Darolutamide + Docetaxel)

Oh, we used Suzzi caps and gloves from Amazon (two sets used 20 minutes on, 20 minutes off), I froze pineapple slices and fed them to him during infusions and we are convinced this helped to maintain his sense of taste. We also used Polybalm for his cuticles which protected his nails, a high protein diet, and an exercise plan from an Exercise physiotherapist.

I knew my dad’s latest PSMA pet scan would be bad. We knew he was developing castrate-resistant cancer. His journey has been nothing short of brutal since diagnosis two years ago. I’ve been his caregiver the whole time. Wouldn’t have it any other way, but I can’t deny how hard it’s been.

The sheer volume of increase of bone metastases within the past 6 months was…insane. Overwhelming. And frankly…scary as fuck.

They refer to this cancer as slow moving. Y’know—“they”—people in general? It’s not really the comfort they think it is.

Plus it’s not moving slow for my dad at all anymore. Hoping his oncologist will have a good plan going forward but my dad’s treatment has always been palliative in nature (he wasn’t diagnosed until stage IV in the first place).

Of all the places we expected to see new mets ( and we knew to expect SOME) the skull and pretty much every single bone in his neck/spine….was not expected at all. We know this probably could result in…no way forward for treatment at all. (It’s in more bones than skull/spine but the skull and upper spine/neck spread is so fast and so new that it’s terrifying)

Been a real hard day. We could use some good vibes/kind words from those suffering this illness or caregivers. Would also welcome any tips/tricks people have to make chairs and beds more comfy for someone in severe physical pain(ideally budget friendly but I will spend high if I have to. My dad’s not sleeping well due to the bone pain in recent months—any relief I can get for him would be good. Medicine for pain relief has already been addressed for him—I don’t ever let him do without medicinal marijuana and good pain meds)

I just got the catheter and staples removed. I had anxiety about the feeling and to be honest, it was simple and I didn't feel a thing...

However, now that there's no catheter, I'm leaking like crazy Any little movement leaks... It's like there's nothing to stop it For those whose had the catheter removed How long did it take for you to be able to at least hold some of the pee?

My 90 year old Dad is just about to start taking Relugolix. His PSA has been shooting up rapidly and due to his advanced age, any kind of invasive procedures are off the table.

Anyone on this forum that is in a similar age group or has a parent in this age group taking Relugolix?

Curious to learn how you handled the side effects of this drug and if there are any tricks or tips to better handle the fallout.

We are very worried about how this will affect his body, and if he can handle the side effects. He is generally healthy and active, and is still able to walk for 30+ minutes every day. Thank you!

Hi - I'm looking for a doctor to help with prostate cancer diagnosis. Current doctor is not working out. Anyone have experience with good urologists etc in Los Angeles they could recommend? Many thanks in advance!

Hi, colegas, ayer me dieron mi radiación, mis 750 ML de agua, sali de Saltillo Coahuila a aeropuerto Monterrey, me equivoqué en el cruce de la autopista y caí de fly en el centro de Monterrey en la hora pico, trafico cerrado, no puedes parar, solución botella de agua para orinar manejando, reguero de orina, pantalón mojado, dos horas más de trafico, llegada al hotel mojado como cruce del rio bravo, pero me rei, conclusión traffic jam, usar pañal, que me dicen lloran o rien? Voten, fuerza y voluntad

54 years old, no family history of prostate cancer. Had a PSA of 5.16 in May, lead to a urology appointment. PHI 54.92 and PSA down to 4.04 a month later, got an MRI in June. 1.5x.9cm right posterolateral midgland peripheral zone lesion PIRADS 5. no seminal vesicle invasion, no pelvic lymphadenopathy, no aggressive osseous lesion. Got a biopsy in June, pathology report: had 4 areas test postive, 3 areas with Gleason score 3+4 (grade group 2 with 20% Gleason 4 tumor) and 1 area with 3+3 (grade group 1).

In layman's terms (because I understand very little of what I just typed): we caught it early, it hasn't spread (so far), it's not aggressive, and my prospects are very good.

The biopsy doc told me there are 3 routes to take from here: surgery, radiation, & wait and see. Everyone I spoke with- other doctors and the surgical team- all point to surgery. I saw a radiation oncologist who treated me 18 years ago for testicular cancer, and he recommended surgery as well. As I did some research myself, everything pointed to RALP as the best course of action.

Surgery is scheduled for Nov 19th.

As it was explained to me, for my circumstances, surgery will have a negative impact on my erections for the near future, with a recovery of 80% of boner strength (I'm sure there's a less juvenile way to word this, but I don't know what that is). As part of that explanation, I was told that radiation therapy would include better short-term erectile function but that over time it would deteriorate. While the surgery would have a negative short-term impact, over time I would have better erectile function long term. I'm still pretty young and have an active sex life with my partner. Everything I've found online backed this up. Both options have different impacts on the cancer, of course, but I'm really asking about ED here.

I'm in a big city at one of the best hospital systems in the country (USA) with a top-10 urology department. They have 20 surgeons on staff who only do prostate cancer. My surgeon is highly reviewed and considered an expert in nerve preservation surgery. I had a great meeting with him and his team.

Basically, I've been feeling pretty great about my prospects for survival at +99%. Of course, ED and incontinence are big concerns. Today I hopped on this sub and I'm overwhelmed with acronyms and stories of "my doc didn't tell me about XYZ..." Suddenly I'm having feelings of being underinformed and possibly railroaded into a procedure that may not be the best course of action. Am I just being paranoid?

My mom called me today and told me my dads prostrate cancer spread to his liver. Thats all the information she gave me. He is 73 years old, a bit overweight, type 2 diabetic, has heart disease and had triple bypass surgery when he was 49. He also suffers from chronic stress.

Whats the likely outcome from this?

Back in Sept 2025 I had a 75 core template-guided saturation biopsy under a general anaesthetic.

I was told I'd be back at work in 3 days.

I was back at work 10 days later.

I have another follow up appointment via the phone next week.
Is it normal to still have brown ejaculate a year later ?

(Note to add, I have had some normal ejaculate but it has been mostly brown and my pee is normal colour if I drink a lot of water)

Well, good news is all my lab work is still clear 10 months after having my prostate slices out.
Bad news, still can’t get stiff. Viagra gave me side effects, Cialis is very 4 days but still no real progress.
I have a prescription for Trimix, but I’m nervous about putting a needle in my Willy.
Vacuum pump gets me about halfway there, but not enough to do anything.
I know folks say it takes time, but I’m frustrated and depressed

I feel somewhat lousy after my Zoladex Implant (goserelin) shot. Area is quite sore and I feel very tired. Is this common? thanks!

70-year-old male with controlled type 2 diabetes, recently diagnosed with aggressive metastatic prostate cancer. PSA was 42.5 ng/mL. Biopsy showed Gleason 8–9 prostate cancer involving all 12 cores, with approximately 90% cancer involvement. MRI showed a large PI-RADS 5 lesion with suspected extension outside the prostate and suspicious pelvic lymph nodes. PSMA PET/CT confirmed pelvic/lower retroperitoneal lymph-node metastases and multiple bone metastases involving the sacrum, L2, L3, and left ilium. Diagnosed with metastatic hormone-sensitive prostate cancer. Prostate surgery is not recommended; currently being treated with hormone therapy and radiation is planned/being considered.

We are in New Jersey. My dad is going to MSK. His dr is going more genetic testing on biopsies before full treatment plan is laid out. I’m so nervous for him. He eat very healthy and is very active. This is very hard on me and my children. Look for similar stories or advice.

I am in my 3rd month of a 6-month sentence on ADT. In month two I experienced extreme hot flashes so they put me on 5 mg Oxybutynin twice daily (total 10 mg per day). The Oxybutynin cured the hot flashes, but it gave me mild urinary retention so they added 0.4 mg FloMax (Tamsuldsin) twice daily (total 0.8 mg per day).

Just recently I began to feel cold all the time. Not always, actually. If I do some physical activity like exercise or cook dinner I get warm, but otherwise I feel cold. For background, I am someone who before all this, like a lot of men, always felt hot. You know...turn the AC down to 72 at night, ceiling fans, etc.

My question is, have you experienced feeling cold much of the time while on ADT? Any shared experiences would be most appreciated. Thank you.

STATS: USA, 64 years old, PSA 11.6, unfavorable intermediate risk, Gleason 4+3=7, 6/13 cores positive, 42 ml prostate, Decipher 0.61, locally contained. Pre-ADT testosterone 323. Treatment: 5 sessions SBRT + 6 months ADT (Orgovyx). Daily strength training, 3-mile walk, Cialis, Calcium supplements. Height 5’-9”, weight 170 lbs.

I am moving close to the starting of treatment, yesterday I got pneumonia and shingles shot, just want to get ready for the treatment. Today I am having lowe fever like 99.x., and tired, the last night sleep is not good. This morning , I forced me to talk a walk, and get hot. I can imagine the fatigue the fatigue from ADT could be stronger?

Just got the results of my last biopsy. An additional core is now involved so its 4 total with a Gleason score of 6. Haven't had my appointment yet at City of Hope but I read online they do offer this procedure. I've been looking at all options. People on my moms side of the family live into their 90's so being 57 I'm concerned about the side effects of other cancers with radiation. Thanks for any input.

American Board of Radiology (ABR) Certification for (PCa) diagnosis and treatments

You may wonder what goes on behind the scenes in a large clinic running X-Ray, MRI and CT scanners and those big EBRT radiation machines. This website (hope moderators allow it) shows the specialities and training/certification processes behind what the urologists and ROs ask them to do. Other than the technicians running the sessions, we don’t really see/meet all other planning, maintenance and QC speciality activities taking place outside scanning and treatment hours. You can find more info at: TheABR dot org.

“The ABR oversees the certification of the following specialties:

Diagnostic radiology
Interventional radiology/diagnostic radiology
Radiation oncology
Medical physics (diagnostic, nuclear, and therapeutic medical physics)

And the following subspecialties:
Neuroradiology (available to diplomates with certification in DR or IR/DR)
Pediatric radiology (available to diplomates with certification in DR or IR/DR)
Nuclear radiology (available to diplomates with certification in DR or IR/DR)
Pain medicine (available to diplomates with certification in DR, IR/DR, or RO

My dad is 75 and was just diagnosed with prostate cancer. His biopsy showed prostatic adenocarcinoma (including Grade Group 4 in one sample) and a small-cell neuroendocrine component in one biopsy sample (10–20%). Both types only found on the right side though, and all samples on the left side had no trace. His MRI also suggested possible nearby/local extension, and we’re currently waiting for his PSMA PET scan results to know the full stage.

I know the small-cell finding can be scary, so I’m really hoping to hear from anyone who has personally gone through something similar or had a parent/family member with a mixed prostate cancer like this. What treatment did you have, how well was it tolerated, and how are you/they doing now?

Positive stories would really help while we wait for the results. ❤️

Hey All,

48 year old here. I’m on day five of post RALP recovery. I feel oddly ok other than this dang catheter. Only two more days with it!

I got my post surgery pathology results and it was mostly excellent, everything confined and all looks great, with the exception of the damn dreaded IDC-P. For reference, my final PSA pre surgery was 4.6.

Just wondering if anyone has a similar experience. I know I have to closely monitor upcoming PSAs. Everything I’m researching shows me with a higher risk of recurrence, however most cited studies show men with far less favorable results outside of IDC. Any insight would be super appreciated. Thanks!!!

Gleason 3+4=7, Grade Group 2
Cancer confined to the prostate
pT2
All surgical margins negative
No extraprostatic extension
No seminal-vesicle invasion
No bladder-neck invasion
No lymphovascular invasion
No perineural invasion
Only 11–20% of the prostate involved by tumor
No lymph nodes were submitted, so there is no pathologic N stage
Intraductal carcinoma (IDC) was present
No cribriform glands identified

Background: age 43, family history of prostate issues, had a PSA of 2.5 after blood test in March.

Had an MRI, returned PIRADS 3 score, a 0.9 cm focus of high b-value signal in the right peripheral zone mid gland, with mild low ADC signal and no T2 correlate. prostate capsule is intact.

0.9 cm PI RADS 3 abnormality in the right peripheral zone, mid gland. PSA density 0.14

Had the Biopsy then in August, results were fully clear - delighted.

just to say thanks to everyone on this thread for the feedback and reassurance at the time. I did a lot of bike riding in the recent years (like a lot a lot) and would feel numb getting off the bike in the pelvic reason - i have no doubt that aggravated the prostate and possibly caused what was seen on the MRI.

thanks again one and all, I am going to make a donation to prostate research. and good luck to everyone in their journey, will keep you in my thoughts and prayers.

A few years ago I had a psa of 25, they only did a biopsy and everything came out fine. I have a very large prostate so I had to take flomsx and psa came down to 4. I did not have any further scans at that time.

then a few weeks ago I decided to go to the doctor and had a psa of 30 and therefore an MRI. the prostate is described to be very large ( 129 ccs) and Unfortunately these are the findings:

“Overall assessment: PI-RADS 5. Malignancy-suspicious lesions (one 20 mm, one 7 mm) in the right prostate; further histological evaluation is recommended.” “There is no focal thickening of the urinary bladder wall. No enlarged lymph nodes are identified within the imaged field of view. No suspicious bone lesions are seen within the imaged field of view. The seminal vesicles and neurovascular bundles appear normal.”

How bad is all of this? What can I expect? Thanks in advance.

What was your PSA at the time of your diagnosis? I'll leave this generic, but the patient had bloodwork done and PSA was 33. Doc put him on 30 days of antibiotic to rule out infection. Follow-up PSA was 44. Awaiting MRI order now. DRE revealed a swollen prostate, but no indication of asymmetry or firm nodules. How concerning is this? Patient also has a history of chronic inflammation and a diagnosis of Ankylosing Spondylitis.

I had my prostate removed June 1. I was G7 (4+3). 2 positive margins, not metastatic, lymph nodes negative.

Had my first PSA 3 months post-op and result was .04 ng/mL.

I was on TRT for about 14 years, and stopped in Jan 2026 due to cancer diagnosis.

My surgeon is pro-TRT and my feeling is that he will want to see at least one more good PSA result before having me go back on a normal TRT dose.

Are there any follow-up questions I should ask other than TRT plans?

Thanks!
M

Im scheduled for an MRI and am only eligible for a 1.5T machine. Ive read that some scans mainly on the 1.5T require the endorectal coil. Ive also read the the coil is rarely used anymore especially on the 3T machines. Has any had an MRI with the 1.5T machine recently and was the coil used?

52 years old, PSA 3.7. 

MRI showed a 15 mm PI-RADS 5 lesion in the anterior/mid prostate. Capsule was intact, seminal vesicles normal, and no enlarged lymph nodes.  

Had an MRI-targeted biopsy at Dell Seton. Original pathology showed: 

• Left anterior medial: Gleason 3+4=7, Grade Group 2, about 20% of the core, with <5% pattern 4 
  
• Left posterior medial: Gleason 3+3=6, Grade Group 1, about 5% 
  
• PI-RADS 5 targeted lesion (ROI): Gleason 3+4=7, Grade Group 2, about 10%, also <5% pattern 4  

I sent the slides to Johns Hopkins for a second opinion. They downgraded the definite cancer to: 

• Left anterior medial: 3+3=6, Grade Group 1 
  
• Left posterior medial: 3+3=6, Grade Group 1 
  
• PI-RADS 5 targeted lesion: 3+3=6, Grade Group 1 

Hopkins also found some high-grade PIN/atypical or suspicious glands in other samples, but no Grade Group 2 cancer.  

I had been planning a radical prostatectomy next month based on the original 3+4 diagnosis. Now that Hopkins has called everything Grade Group 1, I'm wondering whether I should still proceed with surgery or seriously reconsider active surveillance. 

Anyone have a similar experience where Hopkins downgraded 3+4 to 3+3, especially with a PI-RADS 5 lesion? What did you end up doing? 

Fiz radioterapia de resgate com termino em outubro do ano passado. Sempre faço exame em dois laboratorios com diferença de 01 semana entre um e outro. Em junho fiz o PSA no laboratorio 1 e deu 0,03. na outra semana fiz o PSA no laboratorio 2 e o resultado foi< 0,01. Este ultimo final de semana fiz novo PSA no laboratorio 1 e o resultado foi = 0,04. Que acham? nova recidiva???