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User
Posted 15 Nov 2025 at 22:54

Advanced prostate cancer, treated with an orchidectomy and daily apalutamide for almost 4 years.

You're doing well repeated my oncologist every three months, PSA remains less than 0.1.  However, I knew different - ever since Easter I've had new pains and problems. I kept asking for a new scan as my last was two years ago, but the oncologist couldn't allow this due to my excellent PSA levels. The problems, whilst intermittent, got worse and I kept asking for a scan. I even quoted the various final reports on the effectiveness of both apalutamide and enzalutamide - both of these noted that around 50% of participants had showed radiological disease progression without a PSA rise.

Fast forward to October when I was diagnosed with chronic constipation and given copious quantities of laxitive. Two weeks later I could take the pain no longer and spent 9 hours in A&E until they took at CT scan. No constipation, but a cancer growth was blocking a ureter, causing renal colic!  The urologists have given me a nephrostomy to save my kidney and alleviate the pain. They also did a PSA test to prove my point - yes it remains at less than 0.1!

The oncologist is very surprised! Has offered no apologies for letting me suffer for six months unnecessarily and allowing my cancer to progress for longer than necessary. I'm now awaiting 5 doses of radiation to hopefully shrink the cancer flare up, with the hope that then I might be able to have an internal stent rather than a nephrostomy wee bag on my leg!

So, I wasn't able to convince my oncologist that regular rescans should be taken, but perhaps with this cautionary tale you might all have better luck than me!

 

User
Posted 16 Nov 2025 at 19:25

Doctors and specialists are great, until they aren't. 

So far my experience of them is sketchy at best.

I fully appreciate their knowledge and skills,  but a little humility and humanity would go a long way for those I've met.

If you ever fancy a good read seek out The Nylon kid of the north by Philip Paris.

Follow his tortuous journey through the NHS to Harley street and private medicine after complaining of severe back pain. 

Every physio, doctor and specialist knew exactly what was wrong with him and how to cure it. But they were all wrong! From physiotherapy to traction he was tinkered with for years by people who trusted their training but did not listen to their patient. 

He was eventually found to have a kidney blood supply problem requiring a simple operation to correct. 

Doctors are dangerous people, their arrogance born of superior knowledge is their biggest downfall. That and the fact that they are seldom required to say sorry for anything. 

 

 

User
Posted 16 Nov 2025 at 09:31

Hi John

Sorry to hear your issues,but I had a similar journey and still have issues regarding a blocked urethra,on diagnosis I had a double nephrostomy for 6 months as my kidney function was down to 12%,I've had issues in the last 12months with a lymph node blocking my right urethra so I have a kidney stent fitted,so please if you have any questions about this please let me know.

All the best phil 

User
Posted 15 Nov 2025 at 22:54

Advanced prostate cancer, treated with an orchidectomy and daily apalutamide for almost 4 years.

You're doing well repeated my oncologist every three months, PSA remains less than 0.1.  However, I knew different - ever since Easter I've had new pains and problems. I kept asking for a new scan as my last was two years ago, but the oncologist couldn't allow this due to my excellent PSA levels. The problems, whilst intermittent, got worse and I kept asking for a scan. I even quoted the various final reports on the effectiveness of both apalutamide and enzalutamide - both of these noted that around 50% of participants had showed radiological disease progression without a PSA rise.

Fast forward to October when I was diagnosed with chronic constipation and given copious quantities of laxitive. Two weeks later I could take the pain no longer and spent 9 hours in A&E until they took at CT scan. No constipation, but a cancer growth was blocking a ureter, causing renal colic!  The urologists have given me a nephrostomy to save my kidney and alleviate the pain. They also did a PSA test to prove my point - yes it remains at less than 0.1!

The oncologist is very surprised! Has offered no apologies for letting me suffer for six months unnecessarily and allowing my cancer to progress for longer than necessary. I'm now awaiting 5 doses of radiation to hopefully shrink the cancer flare up, with the hope that then I might be able to have an internal stent rather than a nephrostomy wee bag on my leg!

So, I wasn't able to convince my oncologist that regular rescans should be taken, but perhaps with this cautionary tale you might all have better luck than me!

 

User
Posted 16 Nov 2025 at 08:37

It's great to see you again. I'm sorry to hear that you've had had further serious problems.

I remember your earlier conversation.

https://community.prostatecanceruk.org/default.aspx?g=posts&m=309728#post309728

I know its unlikely, but could it be possible that the urethral cancer may not be directly linked to your prostate cancer? 

Edited by member 16 Nov 2025 at 08:47  | Reason: Typo

User
Posted 16 Nov 2025 at 09:10

I have pondered this my friend had prostate cancer ,treated with Brachtherapy  , ten years later found to have colon cancer behind Prostate and now liver too but PSA has never risen ?

I was guessing if Prostate cancer had found a new home PSA would rise but maybe not .

  Mike 

User
Posted 16 Nov 2025 at 20:53

This is indeed a cautionary tale. I well remember one of the talks given by the highly regarded Dr Kwon. in which he says "Don't Live and Die by PSA" and that he has seen a number of cases where men have had zero PSA but have developed widespread cancer. Different situation here but makes his point taken. An excellent video posted several times on this forum over the years but well worth watching. Imaging and radiation has greatly improved since it was made in 2014 but otherwise much relevance. https://www.youtube.com/watch?v=60P98QLWf70

Hope they can sort you out John.

 

Edited by member 16 Nov 2025 at 20:57  | Reason: to highlight link

Barry
User
Posted 29 Jan 2026 at 18:56
You should all push for scans
User
Posted 16 Nov 2025 at 09:36

Hi

I believe the scan showed development from the prostate via the seminal vesicles to the ureter. However, how they can tell from the scans they briefly showed me I don't know.  I think I've read elsewhere that once you've got advanced prostate cancer, any other development elsewhere is counted as prostate cancer anyway.

User
Posted 16 Nov 2025 at 16:29
Nice to hear from you again John despite the circumstances. Sorry you are suffering. We started our journeys together I believe. I’m coming up to 5 yrs on Decapeptyl HT. My psa has risen steadily to 1.1 over this time. I’ve never been scanned in this 5 yrs. I still feel relatively ok but I’m aware most people in my group are getting seriously ill or sadly passing away. Good luck and fingers crossed for you
User
Posted 18 Nov 2025 at 15:28

Hi John 

Sometimes used to get signs of blood in my nephrostomy bags but its to be expected.

Also have blood in my pee with the stent fitted but only after I've been on my bike or a good walk,again which is to be expected.

My advice is always drink plenty of water with the stent and the bag to keep the pipes well flushed.

You forget you have the stent after a week.

Good luck and hope this helps.

Phil 

 

User
Posted 01 Dec 2025 at 10:54
Just wanted to send a note of support. I hope that this treatment will help and that you feel better soon. You are very brave.
User
Posted 01 Dec 2025 at 12:06

Hi, John.

I'm sorry to hear that you are feeling so unwell, mate. I've always admired your resilience. I hope things improve and you can feel more comfortable. 

User
Posted 25 Jan 2026 at 15:43
Wanted to send support and encouragement. You are so courageous, and your sharing here will help so many others. Immense gratitude to you.

I very much hope for the best for your chemo.

In line with Francij1, I hope the liver biopsy is telling. Is it possible that they would consider genetic analysis with this? I hope they can find something actionable for you.

Strength be with you!

User
Posted 26 Jan 2026 at 01:18

Hi

Lutetium treatment was ruled out in favour of chemo, because the amount of PSMA being expressed on the cancer cell walls was so low.  I can't remember the units the consultant gave, but he explained the best I had was 16 ???, whereas usually the mets he treats and gets acceptable results would be 100 ??? or more!

However, as he said this may change in the future if there are further mutations. My original cancer, which has been wonderfully controlled by apalutamide was hardly showing up at all.

User
Posted 26 Jan 2026 at 09:04

Hi John, just wanted to echo the words of others and wish you all the very best in this phase of your journey. Definitely gives me pause for thought about imaging. I’d recently persuaded my Oncology to repeat a CT and had to push for a bone scan as well. He felt PSMA PET not needed due to undetectable PSA.

Hope your chemo goes ok. There are some really good threads on here about it. 

Stay strong John. 

User
Posted 30 Jan 2026 at 03:16

Sorry for your loss.  In comparatively few cases PSA can be low but cancer spread throughout the body as was stated in the link I gave earlier in this thread so imaging more reliable.  I had MRI done annually but now every other year notwithstanding low PSA.

Barry
User
Posted 30 Jan 2026 at 07:03

Hello  Jimthecobowner  

I am sorry to hear of your loss - condolences.

Indeed one should have scans (preference for PSMA-PET scans) - especially if hormone treatment is undertaken that can lead to undetectable psa levels.

Crispin

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User
Posted 16 Nov 2025 at 08:37

It's great to see you again. I'm sorry to hear that you've had had further serious problems.

I remember your earlier conversation.

https://community.prostatecanceruk.org/default.aspx?g=posts&m=309728#post309728

I know its unlikely, but could it be possible that the urethral cancer may not be directly linked to your prostate cancer? 

Edited by member 16 Nov 2025 at 08:47  | Reason: Typo

User
Posted 16 Nov 2025 at 09:10

I have pondered this my friend had prostate cancer ,treated with Brachtherapy  , ten years later found to have colon cancer behind Prostate and now liver too but PSA has never risen ?

I was guessing if Prostate cancer had found a new home PSA would rise but maybe not .

  Mike 

User
Posted 16 Nov 2025 at 09:31

Hi John

Sorry to hear your issues,but I had a similar journey and still have issues regarding a blocked urethra,on diagnosis I had a double nephrostomy for 6 months as my kidney function was down to 12%,I've had issues in the last 12months with a lymph node blocking my right urethra so I have a kidney stent fitted,so please if you have any questions about this please let me know.

All the best phil 

User
Posted 16 Nov 2025 at 09:36

Hi

I believe the scan showed development from the prostate via the seminal vesicles to the ureter. However, how they can tell from the scans they briefly showed me I don't know.  I think I've read elsewhere that once you've got advanced prostate cancer, any other development elsewhere is counted as prostate cancer anyway.

User
Posted 16 Nov 2025 at 09:43

Thanks Phil

I'm still trying to work out how to sleep with a tube sticking out my back! I keep getting the occasional bleed in my tube, even when I don't think I've done anything very strenuous! Did you have this, does the inside of your kidney toughen up and stop bleeding eventually?

How are you finding the internal stent? I presume it's much more convenient to the nephrostomy? Any issues I should be aware of?

Thanks

John

User
Posted 16 Nov 2025 at 09:46
Really sorry to hear this. I hope the radiation can work wonders on this and that you can get the stent. And glad that you finally got the attention you deserved!
User
Posted 16 Nov 2025 at 11:34
Just a thought to ask about the possibility if you have developed Neuroendocrine prostate cancer (NEPC) which is much harder to determine. Hoping all goes well.
User
Posted 16 Nov 2025 at 16:29
Nice to hear from you again John despite the circumstances. Sorry you are suffering. We started our journeys together I believe. I’m coming up to 5 yrs on Decapeptyl HT. My psa has risen steadily to 1.1 over this time. I’ve never been scanned in this 5 yrs. I still feel relatively ok but I’m aware most people in my group are getting seriously ill or sadly passing away. Good luck and fingers crossed for you
User
Posted 16 Nov 2025 at 19:25

Doctors and specialists are great, until they aren't. 

So far my experience of them is sketchy at best.

I fully appreciate their knowledge and skills,  but a little humility and humanity would go a long way for those I've met.

If you ever fancy a good read seek out The Nylon kid of the north by Philip Paris.

Follow his tortuous journey through the NHS to Harley street and private medicine after complaining of severe back pain. 

Every physio, doctor and specialist knew exactly what was wrong with him and how to cure it. But they were all wrong! From physiotherapy to traction he was tinkered with for years by people who trusted their training but did not listen to their patient. 

He was eventually found to have a kidney blood supply problem requiring a simple operation to correct. 

Doctors are dangerous people, their arrogance born of superior knowledge is their biggest downfall. That and the fact that they are seldom required to say sorry for anything. 

 

 

User
Posted 16 Nov 2025 at 20:53

This is indeed a cautionary tale. I well remember one of the talks given by the highly regarded Dr Kwon. in which he says "Don't Live and Die by PSA" and that he has seen a number of cases where men have had zero PSA but have developed widespread cancer. Different situation here but makes his point taken. An excellent video posted several times on this forum over the years but well worth watching. Imaging and radiation has greatly improved since it was made in 2014 but otherwise much relevance. https://www.youtube.com/watch?v=60P98QLWf70

Hope they can sort you out John.

 

Edited by member 16 Nov 2025 at 20:57  | Reason: to highlight link

Barry
User
Posted 18 Nov 2025 at 15:28

Hi John 

Sometimes used to get signs of blood in my nephrostomy bags but its to be expected.

Also have blood in my pee with the stent fitted but only after I've been on my bike or a good walk,again which is to be expected.

My advice is always drink plenty of water with the stent and the bag to keep the pipes well flushed.

You forget you have the stent after a week.

Good luck and hope this helps.

Phil 

 

User
Posted 23 Nov 2025 at 22:55

Hi John. Really sorry to hear about your plight. Hope the radiation is successful for you. 

For me your story really brings home the challenges around parity of disease monitoring. So disappointed for you that you don’t seem to have been listened to.

I think your story along with the research mentioned by you and others in this post and the linked post is helping me justify pushing for annual imaging. If not on the NHS then privately. Seems we just cannot rely on undetectable PSA. 

Wishing you the best of luck with this unwelcome progression. 

User
Posted 29 Nov 2025 at 14:46

Hi, that is very very worrying! I have stage 4 CRPCa. Last scan was 3 years ago - showed mets in ribs, sacrum and throughout my spine. I was started on Decapeptyl and Enzalutamide. 12 weekly PSA test / onc appointment shows 0.03.

I feel as if I should be having another scan or something but it’s never been mentioned. Next appt is 14 January and I will definitely be asking for a scan.

Thanks for your story. Good luck, stay strong 😉

User
Posted 01 Dec 2025 at 00:16

Quick update.

Just had 5 days of radiotherapy and feel s*** - achy, very tired and off my food.

The nephrostomy site is hurting - the GP practice nurse didn't put a wide enough edge around the dressing and it got wet in the shower .  Now I think there may be some inflammation, so it's back to the hospital for me tomorrow! Plus from Friday night there have been white lumps going down my tube, is that normal?

Whole body bone scan on Wednesday to check for any more spread, but I have to wait until 23/12 for chest CT and probably February for an abdomen CT to see if the radiotherapy did any good.

Not feeling very hopeful or positive at the moment 

User
Posted 01 Dec 2025 at 10:54
Just wanted to send a note of support. I hope that this treatment will help and that you feel better soon. You are very brave.
User
Posted 01 Dec 2025 at 12:06

Hi, John.

I'm sorry to hear that you are feeling so unwell, mate. I've always admired your resilience. I hope things improve and you can feel more comfortable. 

User
Posted 25 Jan 2026 at 11:27

An update - had a bone scan before Christmas which showed nothing and an attempted liver biopsy of suspicious areas using ultrasound. They couldn't find anything worthy of taking a biopsy. Based on the problems I'd had, consultant recommended I start on chemo in the new year. 

So things sounded reasonable ( other than my fears of chemo), but I didn't believe a word of it! Consequently, I paid for a liver MRI, PSMA PET scan and pelvic CT at Genesis Care between Christmas and the new year. The reports were delivered the next day - can you imagine that happening with the NHS!  Unfortunately, the news wasn't good.  Rather than suspicious areas not worthy of biopsy in my liver, Genesis found 15 to 20 mets ( they even quoted differential size increases from previous NHS scans!). They also found new bone mets on my L2 vertebrae, right femur and pelvis and a number of lymph node issues not reported in the NHS CT scan from late November.  Unfortunately, the PSMA PET scan noted that this new mutated cancer  was not expressing enough PSMA to make lutetium treatment a wise option. For the record - PSA level still undetectable!

So back to crappy NHS for chemo!  My meeting with the consultant was interesting, no comment on why NHS scans so divergent to Genesis.  Rather than recommending basic docetaxel chemo as he had last time, the oncologist did a complete 180 and said they'd have to redo the liver biopsy and consider additional chemo such as carboplatin.  At a previous meeting when I suggested I might have small celled/neuroendocrine prostate cancer due to the lack of PSA and might need different chemo drugs, he said that they didn't do that and it would be very unusual!

So sat here now waiting for the 6/2/26 for consultant meeting to get biopsy results and discuss chemo drugs, prior to a start on 9/2.  Hoping all the time my liver can hold out and the mets slowed by any chemo given.  I'm rather scared at the moment, you don't last long without a functioning liver! Plus, who knows what damage is being caused around my bladder and pelvis by this new mutated invader!

Edited by member 25 Jan 2026 at 11:44  | Reason: Spelling

User
Posted 25 Jan 2026 at 12:06

Hi John,

I'm so sorry to hear that your self funded scan showed yet more 'hot spots'. You say that you're feeling scared, who wouldn't be? I hope your chemo is effective. Keep battling on, mate. Your bravery is an inspiration to us all.

User
Posted 25 Jan 2026 at 12:30

I’m sorry to hear of your experience. I’m sure you are not alone. We paid for two hip replacements for my wife last year due to excessive waiting times on the NHS. 

I was thinking about the costs of self funding a Psma pet scan towards the end of the year as part of my mitigation to remain on AS if possible. I doubt the NHS would offer one for peace of mind. Was it easy to arrange and if not being impolite expensive?

User
Posted 25 Jan 2026 at 13:19

Hi John

PSMA PET scans don't come cheap I'm afraid.  I had to pay as Gloucestershire don't even have a scanner!  Genesis charged me £3,200. Very easy to arrange.

Edited by member 25 Jan 2026 at 13:31  | Reason: Not specified

User
Posted 25 Jan 2026 at 14:30
Have they managed to get a definitive biopsy of the "mutated" tumour? As your PSA is still so low maybe it's not prostate at all?

Hope the chemo goes well and delivers the results!

User
Posted 25 Jan 2026 at 15:43
Wanted to send support and encouragement. You are so courageous, and your sharing here will help so many others. Immense gratitude to you.

I very much hope for the best for your chemo.

In line with Francij1, I hope the liver biopsy is telling. Is it possible that they would consider genetic analysis with this? I hope they can find something actionable for you.

Strength be with you!

User
Posted 25 Jan 2026 at 16:20

John , sorry to see you are having a carp time, sorry I don't have any words of wisdom to offer.Hope you get some resolution at your next meeting. 

Thanks Chris 

 

User
Posted 25 Jan 2026 at 16:46

Sorry to read this but thank you for posting. My husband has undetectable psa but is feeling worse. It just shows all may not be as we are led to believe. I do hope you get the treatment you need. 

User
Posted 25 Jan 2026 at 16:50

Thanks for the information. Actually that seems a reasonable cost given the equipment and expertise needed. 

User
Posted 25 Jan 2026 at 17:35

Thanks for the update John.  Wishing you strength and all the very best for the chemo.

User
Posted 25 Jan 2026 at 17:50

Hi John ,

sorry to hear about your current situation, I wish you all the best moving along this crappy road.

I was shocked to read PSA remains undetectable on Apalutamide , 50% of patients as thats what I’ve been on since i had a recurrence , my PSA came down from 13.46 to 0.32 in just over 3 weeks , so I will keep an eye on how I feel as there could be Tumora without a rise in PSA good  luck Anthony 

Edited by member 27 Jan 2026 at 09:48  | Reason: Not specified

User
Posted 25 Jan 2026 at 17:52

Hello ForestJohn

What can one say but 'courage'...  

The apalutamide is doing its job at keeping the psa undetectable but unfortunately it still allows castration resistant cancer to grow.  As you have discovered you needed a PSMA-PET scan to visualise this.  [Yes you should have been offered regular PSMA PET scans over the last two years to check on this]  Anyway the point I would like to understand is why the 177-PSMA treatment will not treat the lesions that show up in PSMA-PET scans.  I had two doses of 177Lu - and for the second dose the PSMA-PET scan was already showing much reduced activity .. and I am now in the situation of psa < 0.01 ng/ml but I am on Enzalutamide.

 I had a PSMA-PET scan in October [it was clear] but I expect my oncologist to offer me another PSMA-PET scan when I see her in February. 

Courage!

Crispin

User
Posted 25 Jan 2026 at 17:57

Originally Posted by: Online Community Member
Thanks for the information. Actually that seems a reasonable cost given the equipment and expertise needed. 

Hi again, John

At present, with your diagnosis, I'd keep your money in your pocket, mate. 

User
Posted 26 Jan 2026 at 01:18

Hi

Lutetium treatment was ruled out in favour of chemo, because the amount of PSMA being expressed on the cancer cell walls was so low.  I can't remember the units the consultant gave, but he explained the best I had was 16 ???, whereas usually the mets he treats and gets acceptable results would be 100 ??? or more!

However, as he said this may change in the future if there are further mutations. My original cancer, which has been wonderfully controlled by apalutamide was hardly showing up at all.

User
Posted 26 Jan 2026 at 06:51

Hello

The units they use are usually 'standard uptake value' (SUV)  but my question is if the tumour takes up enough PSMA to visualise for a PET scan -  why can the lesion not take up enough PSMA for a 177Lu-PSMA treatment?

I will study this a bit..

Good luck with the chemo - please keep us informed.

Crispin

 

User
Posted 26 Jan 2026 at 09:04

Hi John, just wanted to echo the words of others and wish you all the very best in this phase of your journey. Definitely gives me pause for thought about imaging. I’d recently persuaded my Oncology to repeat a CT and had to push for a bone scan as well. He felt PSMA PET not needed due to undetectable PSA.

Hope your chemo goes ok. There are some really good threads on here about it. 

Stay strong John. 

User
Posted 29 Jan 2026 at 18:56
My husband s cancer was in bones liver lungs and still his PSA was low he died last summer. I don’t know why PSA is used as a benchmark of being ok it really isn’t
User
Posted 29 Jan 2026 at 18:56
You should all push for scans
User
Posted 30 Jan 2026 at 03:16

Sorry for your loss.  In comparatively few cases PSA can be low but cancer spread throughout the body as was stated in the link I gave earlier in this thread so imaging more reliable.  I had MRI done annually but now every other year notwithstanding low PSA.

Barry
User
Posted 30 Jan 2026 at 07:03

Hello  Jimthecobowner  

I am sorry to hear of your loss - condolences.

Indeed one should have scans (preference for PSMA-PET scans) - especially if hormone treatment is undertaken that can lead to undetectable psa levels.

Crispin

User
Posted 05 Mar 2026 at 22:04
Hi John,

I just wanted to thank you once again for your courage and generosity in sharing on here. I really hope the biopsy helps nail a good treatment. Is there any chance they will put you on a trial where your biopsy is sequenced to look for actionable mutations? Wishing you all the best.

User
Posted 06 Mar 2026 at 14:20

The battles with the NHS continue! Following my second liver biopsy where they found squamous/epithelial type cancer cells, rather than the normal prostatic adenocarcinoma cells, the chemo date was delayed for TURBT procedure and biopsy in my bladder and until after my nephrostomy pipe change. This found the cancer was intramuscular in my bladder, plus blocking my ureter. Three weeks later we're still waiting for histology results - lovely efficient NHS!

The consultant/MDT don't know now whether my prostate cancer mutated and infiltrated my bladder, plus metastisised in my liver, seminal vesicles, lymph nodes and several bones, or whether I've now also got metastatic bladder cancer! Could I be this unlucky?

So now I've got chemo starting next Tuesday - carboplatin and gemcitabine, rather than docetaxel which wouldn't be suitable for these new cancer cells.

Never had chemo before, so I'm very worried. However, at least something is being done before my liver and bladder are ruined!

 

User
Posted 06 Mar 2026 at 20:51

Jeez!  It's never reassuring to be a medical mystery. 

Very best wishes for the chemo. 

User
Posted 06 Mar 2026 at 21:36
Fingers crossed for you that you get an easy ride on chemo and it gives you a long remission...
User
Posted 06 Mar 2026 at 22:28

Well best wishes, let's hope it works out.  It's surprising you're waiting over 3 weeks for histology of a cancer.  Although they're going ahead with treatment next week which is something.  All the best Peter

User
Posted 07 Mar 2026 at 08:00

Also wishing you the very best ForestJohn!!! Did your original biopsy show small cell? You did seem to think it had changed. You really know yourself best. I so wish the NHS had listened to you but by now I hope they have learned they really need to listen to you very carefully now. I hope for the best for this newly planned regimen. Will be thinking of you during your start of that this week.

 
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