Stage 4 Metastatic - what to expect after 6 months?

Posted by prbutler @prbutler, May 7 8:07pm

In November I was diagnosed with metastatic prostate cancer. I had a PSA of 5000, Gleason score of 9, and the cancer had spread to lymph nodes, many bones, and I had small spot on my lungs.

We are approaching 6 months since the diagnosis. I did triple therapy of chemo (Docetaxel), Nubeqa, Firmagon. I've finished 18 weeks of the chemo and have transitioned to Eligard (along with continued Nubeqa). My PSA at last check was 2.2 and PET scans showed no new tumor growth and significant tumor shrinkage.

I will start 28 rounds of radiation on my prostate next week.

I'm 55, have continued to exercise daily, and have changed my diet quite a bit. I'm struggling mainly with fatigue, hot flashes, and some leg swelling.

I'd love to connect with anyone with a similar diagnosis.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Thank you for sharing. I was in a similar situation to yourself 2/3 months ago but my PSA started rising again after firmagon, docetaxel, Orgovyx and Nubeqa took my PSA to 2.07. My oncoligist arranged FoundationOne Liquid CDx 'Molecular Tumour Biomarker Testing' for me, and I expect results at the end of next week or early the following week. As of today I'm still taking Orgovyx (Relugolix) and Nubeqa (Darokutamide) daily, I have some right hip and groin pain at times that panadol seems to contain at present. Until the test results are back and analysed I won't know what the plan for me will be. Targeted therapy has been mentioned. I hope your good treatment continues. I will report on here again shortly.

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Profile picture for doyleoot @doyleoot

Thank you for sharing. I was in a similar situation to yourself 2/3 months ago but my PSA started rising again after firmagon, docetaxel, Orgovyx and Nubeqa took my PSA to 2.07. My oncoligist arranged FoundationOne Liquid CDx 'Molecular Tumour Biomarker Testing' for me, and I expect results at the end of next week or early the following week. As of today I'm still taking Orgovyx (Relugolix) and Nubeqa (Darokutamide) daily, I have some right hip and groin pain at times that panadol seems to contain at present. Until the test results are back and analysed I won't know what the plan for me will be. Targeted therapy has been mentioned. I hope your good treatment continues. I will report on here again shortly.

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@doyleoot
Is there some reason you have not had a PSMA Pet scan. It sounds like you’ve got some bone metastasis that could be zapped with SBRT radiation.

Doing that scan would allow you to have targeted therapy. The biomarker really is not going to help in that regard, You need the scan to see what’s going on.

Staying on the drugs, can be beneficial, If they can zap the metastasis, you have, then the drugs can usually prevent it from reoccurring.

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Profile picture for Jeff Marchi @jeffmarc

@doyleoot
Is there some reason you have not had a PSMA Pet scan. It sounds like you’ve got some bone metastasis that could be zapped with SBRT radiation.

Doing that scan would allow you to have targeted therapy. The biomarker really is not going to help in that regard, You need the scan to see what’s going on.

Staying on the drugs, can be beneficial, If they can zap the metastasis, you have, then the drugs can usually prevent it from reoccurring.

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@jeffmarc : please see my original post:

I was diagnosed with Advanced Prostate Cancer in May 2025 my PSA was 340. Following 2+5 monthly Firmagon injections, that overlapped with 6 docetaxel infusions given every 3 weeks, my PSA was down to 2.07 on 07 Jan 2026. I was put on Relugolix and Darolutamide a month or so before the doxetaxel finished but on 24 Apr 2026, following a PSMA-Pet scan that lit up showing active tumors, my PSA had gone up to 7.6. The PSA was 44 on 09 Jun 2026. I have an appointment on Monday 22 Jun 2026 with one of the top oncologists in the country. I'm hopeful that there will be follow-on treatment.

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I also have Level 4 cancer and had my prostate removed 9/2024. After surgery Nubeqa & Eligard (now on Orgovyx) shrunk small lung nodules and lowered PSA and testosterone to undetectable levels after 12/2024. Radiation to prostate bed was not done because the cancer had already spread to "lung only" nodules and likely would re-occur in other parts of the body. When that happens then chemo and targeted radiation will occur.

Just a thought: Have you and/or your doctor considered a prostatectomy instead of radiation treatments? Once the prostate is radiated it turns to "mush" and then inoperable. Either way, probably more chemo and targeted radiation will be the outcome. The successful shrinkage of tumors certainly indicates the chemo, etc. has worked. Given Level 4 aggressive cancer, ADT will be the course after either radiation or prostatectomy, for the rest of your life.

You are young, strong and likely very capable of enduring the course! I wish you the best on your cancer journey.

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Hello,
Sorry to hear of what was your advance and ominous diagnosis, and how well you have responded to treatment and therapy. My one question is: Did your father, grandfather(s), uncle(s) have prostate cancer, and at such a young age, and...are they still alive (how long now after diagnosis and treatment)?
As you likely know, there is a strong familial connection with prostate cancer, and I wonder that "if you knew" that there were men in your family who also had it at such an early age, what circumstance(s) kept you from starting PSA testing in your early to mid-40's? Or did you, and there was no sign of disease? I had a strong familial connection: Maternal grandfather who lived to 96 "with" prostate cancer, and died of Alzheimer's. Maternal uncle who lived to 86 having had a prostatectomy, and died of a massive cluster-bomb stroke. And, my own father who died at 99 years 10 months "with" prostate cancer that took that long to kill him. So, I of course was diagnosed at age 70. I am now 14 months post-prostatectomy having just transitioned to PSA's now every six months...all PSA's and one Ultra-sensitive PSA at their "zero" levels: <0.01 ng/ml and <0.006 ng/ml, respectively.
One thing I am not well-read in is how rapidly a case of prostate cancer can progress from non-existent or from a Gleason 3+3=6 (basically non-cancer) to a Gleason 9 and a PSA like your 5,000. All that we read is mostly how "prostate cancer is a very slow growing cancer...and you'll likely die from something else, before the cancer kills you." Yet, this entire blog - understanding it is a subset of all of the bad cases and outcomes - tells us of bad outcomes that happen much sooner than out-living it.

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Profile picture for rwski79 @rwski79

I also have Level 4 cancer and had my prostate removed 9/2024. After surgery Nubeqa & Eligard (now on Orgovyx) shrunk small lung nodules and lowered PSA and testosterone to undetectable levels after 12/2024. Radiation to prostate bed was not done because the cancer had already spread to "lung only" nodules and likely would re-occur in other parts of the body. When that happens then chemo and targeted radiation will occur.

Just a thought: Have you and/or your doctor considered a prostatectomy instead of radiation treatments? Once the prostate is radiated it turns to "mush" and then inoperable. Either way, probably more chemo and targeted radiation will be the outcome. The successful shrinkage of tumors certainly indicates the chemo, etc. has worked. Given Level 4 aggressive cancer, ADT will be the course after either radiation or prostatectomy, for the rest of your life.

You are young, strong and likely very capable of enduring the course! I wish you the best on your cancer journey.

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@rwski79
Actually, if you have radiation, there are surgeons that will operate on a radiated prostate. Not only that, but there are other options. Here’s some more information.

People who have radiation as their primary treatment have been told by doctors that surgery isn’t really an option if there’s a reoccurrence. Other options are not really mentioned..

This study shows that both salvage focal therapy (HIFU and cryotherapy) and salvage surgery were equally effective at extending the life of a patient that started off with radiation.

Those that had focal therapy had fewer perioperative complications.
https://jamanetwork.com/journals/jamaoncology/article-abstract/2844900

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Are there any other octogenarians out there?
At 82, I have finally come to grips with my prostate cancer. Early on (65ish), my GP watched as my PSA began to inch upward at about 1-2 points per year. When it hit 16, I learned about the 4K test, took it, and was told that I had only 10% chance of ever having problematic or metastatic cancer.
I liked those odds, shared them with my GP, and he suggested that we would "watch and wait."
Then, almost to the day I turned 80, I began to experience nocturia (get-ups, poor stream, double voids, etc.). I endured this new reality for several months until it became rather uncomfortable, but reminded myself that I was, after all, in my 80s now . Consulting the internet assiduously (I'm a retired academic), I figured I had to become reconciled to the BPH that 80-90% of ALL octogenarians experience. But I decided to consult a urologist anyway. He put me on Alfuzosin, which cut my nocturnal wakeups in half, thankfully. But he suggested that we do a few more procedures, given my nocturia and my extreme fatigue.
Well, after the MRI, the biopsy, the PET Scan, (and a newly measured PSA of 30--apparently LOW for this group), my urologist told me that I had an aggressive stage 4 prostate cancer. A medical oncologist put me on bicalutamide for a month, prior to the Orgovyx, which I have now been taking for a month.
The plan is to continue with Orgovyx for another month or so, and then consider radiation. The possibility of a HoLEP procedure looms...but, of course, pre-radiation.
My question is: will the HoLEP substantially mitigate my nocturia (which is a manageable 2-3 getups, giving me three 2.5 hour "naps")? Or should I just continue the Orgovyx (PSA now down to 4.2, two months into my ADT) until I reach my PSA nadir and then do the radiation?
Any suggestions or sharing are much appreciated.

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Profile picture for kitlund @kitlund

Are there any other octogenarians out there?
At 82, I have finally come to grips with my prostate cancer. Early on (65ish), my GP watched as my PSA began to inch upward at about 1-2 points per year. When it hit 16, I learned about the 4K test, took it, and was told that I had only 10% chance of ever having problematic or metastatic cancer.
I liked those odds, shared them with my GP, and he suggested that we would "watch and wait."
Then, almost to the day I turned 80, I began to experience nocturia (get-ups, poor stream, double voids, etc.). I endured this new reality for several months until it became rather uncomfortable, but reminded myself that I was, after all, in my 80s now . Consulting the internet assiduously (I'm a retired academic), I figured I had to become reconciled to the BPH that 80-90% of ALL octogenarians experience. But I decided to consult a urologist anyway. He put me on Alfuzosin, which cut my nocturnal wakeups in half, thankfully. But he suggested that we do a few more procedures, given my nocturia and my extreme fatigue.
Well, after the MRI, the biopsy, the PET Scan, (and a newly measured PSA of 30--apparently LOW for this group), my urologist told me that I had an aggressive stage 4 prostate cancer. A medical oncologist put me on bicalutamide for a month, prior to the Orgovyx, which I have now been taking for a month.
The plan is to continue with Orgovyx for another month or so, and then consider radiation. The possibility of a HoLEP procedure looms...but, of course, pre-radiation.
My question is: will the HoLEP substantially mitigate my nocturia (which is a manageable 2-3 getups, giving me three 2.5 hour "naps")? Or should I just continue the Orgovyx (PSA now down to 4.2, two months into my ADT) until I reach my PSA nadir and then do the radiation?
Any suggestions or sharing are much appreciated.

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@kitlund What did the Radiation Oncologist say about the size of your prostate and ability to perform radiation? If too large you may need a procedure to reduce it. During radiation urinary symptoms usually get worse, but a few weeks after radiation the inflammation will clear. At that time urinary performance is usually improved from the pre-radiation condition.

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Profile picture for jim18 @jim18

@kitlund What did the Radiation Oncologist say about the size of your prostate and ability to perform radiation? If too large you may need a procedure to reduce it. During radiation urinary symptoms usually get worse, but a few weeks after radiation the inflammation will clear. At that time urinary performance is usually improved from the pre-radiation condition.

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@jim18
Prostate is 100 cm. Now that you ask, I'm remembering their expressed optimism that the prostate would shrink some (and the implication was that it would be enough) during the ADT. They never said that radiation was dependent upon XYZ size of prostate.
Thanks.

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Profile picture for kitlund @kitlund

Are there any other octogenarians out there?
At 82, I have finally come to grips with my prostate cancer. Early on (65ish), my GP watched as my PSA began to inch upward at about 1-2 points per year. When it hit 16, I learned about the 4K test, took it, and was told that I had only 10% chance of ever having problematic or metastatic cancer.
I liked those odds, shared them with my GP, and he suggested that we would "watch and wait."
Then, almost to the day I turned 80, I began to experience nocturia (get-ups, poor stream, double voids, etc.). I endured this new reality for several months until it became rather uncomfortable, but reminded myself that I was, after all, in my 80s now . Consulting the internet assiduously (I'm a retired academic), I figured I had to become reconciled to the BPH that 80-90% of ALL octogenarians experience. But I decided to consult a urologist anyway. He put me on Alfuzosin, which cut my nocturnal wakeups in half, thankfully. But he suggested that we do a few more procedures, given my nocturia and my extreme fatigue.
Well, after the MRI, the biopsy, the PET Scan, (and a newly measured PSA of 30--apparently LOW for this group), my urologist told me that I had an aggressive stage 4 prostate cancer. A medical oncologist put me on bicalutamide for a month, prior to the Orgovyx, which I have now been taking for a month.
The plan is to continue with Orgovyx for another month or so, and then consider radiation. The possibility of a HoLEP procedure looms...but, of course, pre-radiation.
My question is: will the HoLEP substantially mitigate my nocturia (which is a manageable 2-3 getups, giving me three 2.5 hour "naps")? Or should I just continue the Orgovyx (PSA now down to 4.2, two months into my ADT) until I reach my PSA nadir and then do the radiation?
Any suggestions or sharing are much appreciated.

Jump to this post

@kitlund
Orgovyx can be pretty hard on someone 80+. Due to your BPH, I wonder if your prostate is over around 75 cc. During one of the monthly meetings the Mayo radiation oncologist said that he didn’t like to radiate a prostate over 75 cc. Hopefully Orgovyx can bring it down So they can do radiation. Maybe the HoLEP can reduced it enough.

Once you’ve had radiation getting off Orgovyx Would be a good idea since it can cause a lot of side effects and fatigue can be difficult for many people. I know and a lot of guys in their 80s that are on Nubeqa alone. It works really well to keep the PSA down and prevents the testosterone from helping the cancer grow. Something to discuss with your doctor.

I was having a problem getting up too many times at night, I’d wake up and feel like I had to go and I knew damn well I didn’t. I’m now taking Myrbetriq And I usually don’t get up at all at night anymore. I’ll be laying in bed reading after I wake up and maybe wait a half hour or 45 minutes before I get up go pee. No urgency any more. Gemtesa is supposed to work similarly. My urologist was real helpful when I asked about getting one of the drugs.

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