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My world has turned Upside Down in the last 3 Days : T4N1M0

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User
Posted 05 Oct 2025 at 01:01

My world has turned upside down in the last 3 days. 
My diagnosis is T4N1M0 
My Gleason is 10 

A month ago I hadn't heard of any of these things.
I went to my local GP because I had a severe chest infection in March, and was referred to hosp respiratory centre. 
I'm 59.
I don't need to go to Docs - because I'm never sick. It's prob been 30years since I've been to a GP for anything. 
Anyway - I did get a severe chest infection (actually I think it was Covid) and ended up in Urgent Care in my local hosp in March - and they said you have "High blood pressure - go to your GP "

And I said :  "Of course I do - I'm ill..." 
 
Anyhow after a few months of nagging off the Mrs - I go to get my Blood Pressure checked = which was entirely normal. 
But my new Child GP said - we should check some other things .... 
and Iasked whether PSA was one of those ..... only because someone said it to me literally 2 nights before in the pub .... 

1st test was "abnormal" = redo. 
2nd test was high = 20.9 

My Mrs came with me - and spent all her time trying to convince Child GP to stick his finger up my bum .... 

Child GP said NO. We're past that .... 
Off for an MRI please sir.
Had that. 

Then amazingly, I had cancellation appointments for Biopsy, CT and Nuclear Bone all within a week. 

I'm slightly suspicious at this stage.
Mrs just says I'm lucky .......  So from 2nd PSA - to all the scans - 4 weeks. 


Met the Nursing Specialist on Weds : Diagnosis - T4N1M0
Aggressive and in  Lymph Nodes. 

Everyone knows what that means .....  









 

User
Posted 05 Oct 2025 at 01:01

My world has turned upside down in the last 3 days. 
My diagnosis is T4N1M0 
My Gleason is 10 

A month ago I hadn't heard of any of these things.
I went to my local GP because I had a severe chest infection in March, and was referred to hosp respiratory centre. 
I'm 59.
I don't need to go to Docs - because I'm never sick. It's prob been 30years since I've been to a GP for anything. 
Anyway - I did get a severe chest infection (actually I think it was Covid) and ended up in Urgent Care in my local hosp in March - and they said you have "High blood pressure - go to your GP "

And I said :  "Of course I do - I'm ill..." 
 
Anyhow after a few months of nagging off the Mrs - I go to get my Blood Pressure checked = which was entirely normal. 
But my new Child GP said - we should check some other things .... 
and Iasked whether PSA was one of those ..... only because someone said it to me literally 2 nights before in the pub .... 

1st test was "abnormal" = redo. 
2nd test was high = 20.9 

My Mrs came with me - and spent all her time trying to convince Child GP to stick his finger up my bum .... 

Child GP said NO. We're past that .... 
Off for an MRI please sir.
Had that. 

Then amazingly, I had cancellation appointments for Biopsy, CT and Nuclear Bone all within a week. 

I'm slightly suspicious at this stage.
Mrs just says I'm lucky .......  So from 2nd PSA - to all the scans - 4 weeks. 


Met the Nursing Specialist on Weds : Diagnosis - T4N1M0
Aggressive and in  Lymph Nodes. 

Everyone knows what that means .....  









 

User
Posted 05 Oct 2025 at 09:13

Hi ,sorry you are here i know how worrying it can be, but be assured once a treatment plan has been put in place and your PSA comes down things will look brighter. My OH Gary, 55 at the time was diagnosed PSA 23 Gleason 4+5 spread to lymph nodes. Too far gone to have it removed but was offered chemo and also put on a trial. This was 10 yrs ago! Treatments have advanced since then. Gary still works in construction but at a slower pace.

There's lots of people on this forum that can help you through this.

It can be quite quiet here at the weekend but hang on in there.

Best wishes

Debby

User
Posted 05 Oct 2025 at 09:02
Probably Hormone therapy, up front chemo and maybe radiotherapy too... Fingers crossed you will get a long remission, make sure they throw everything at it now it's been found.

User
Posted 05 Oct 2025 at 09:17

I was diagnosed T4M1N1 Stage 4 back in 2018 with metastatic spread to my hip.

My Oncologist threw all treatments at it, lifetime HT, chemo and radiotherapy. It was a tough gig for a few months, 7 years on I'm still soldiering on, PSA has been undetectable for a few years now although I still get the yips for the few days between blood test and PSA results.

Good luck with your treatment choice, this forum particularly in the early stages when your head is all over the place is a terrific source of support.

User
Posted 05 Oct 2025 at 09:30

Thanks francij1, Merrivale and JasperM for responding so quickly, especially on a Sunday morning. 

User
Posted 05 Oct 2025 at 10:11
My diagnosis ended up the same as yours after my actual surgery and the results after surgery were really poor with multiple lymph nodes affected. That was on the 15th June 2015 ( how could I forget ). After 4 years I had bone spread also in multiple locations. But here I am typing ten years on to offer some sort of support. I had surgery , HT for life , and some spinal RT

Best of luck and don’t give up hope yet

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User
Posted 05 Oct 2025 at 08:57

Hi Johnny.

I'm very sorry that your diagnosis is poor. It must be such a huge shock for you and your wife. 

My knowledge on stage 4 disease and the treatment of it, is very limited. However, we have several posters who have metastasis and I'm sure that they'll offer their help and support.

User
Posted 05 Oct 2025 at 09:02
Probably Hormone therapy, up front chemo and maybe radiotherapy too... Fingers crossed you will get a long remission, make sure they throw everything at it now it's been found.

User
Posted 05 Oct 2025 at 09:13

Hi ,sorry you are here i know how worrying it can be, but be assured once a treatment plan has been put in place and your PSA comes down things will look brighter. My OH Gary, 55 at the time was diagnosed PSA 23 Gleason 4+5 spread to lymph nodes. Too far gone to have it removed but was offered chemo and also put on a trial. This was 10 yrs ago! Treatments have advanced since then. Gary still works in construction but at a slower pace.

There's lots of people on this forum that can help you through this.

It can be quite quiet here at the weekend but hang on in there.

Best wishes

Debby

User
Posted 05 Oct 2025 at 09:17

I was diagnosed T4M1N1 Stage 4 back in 2018 with metastatic spread to my hip.

My Oncologist threw all treatments at it, lifetime HT, chemo and radiotherapy. It was a tough gig for a few months, 7 years on I'm still soldiering on, PSA has been undetectable for a few years now although I still get the yips for the few days between blood test and PSA results.

Good luck with your treatment choice, this forum particularly in the early stages when your head is all over the place is a terrific source of support.

User
Posted 05 Oct 2025 at 09:30

Thanks francij1, Merrivale and JasperM for responding so quickly, especially on a Sunday morning. 

User
Posted 05 Oct 2025 at 10:11
My diagnosis ended up the same as yours after my actual surgery and the results after surgery were really poor with multiple lymph nodes affected. That was on the 15th June 2015 ( how could I forget ). After 4 years I had bone spread also in multiple locations. But here I am typing ten years on to offer some sort of support. I had surgery , HT for life , and some spinal RT

Best of luck and don’t give up hope yet

User
Posted 05 Oct 2025 at 12:25
My OH situation was very similar. As the others have written, the docs threw most things at it but he wants to hold chemo in reserve and it is his decision. With the M0 this means it is still in the pelvic region. We started really making the most of things even when going through rough times.

2 years later PSA undetectable. Best of luck to you and your family.

User
Posted 13 Nov 2025 at 20:32

I’m a glass half empty guy and even I I’m more optimistic for you

I have a similar profile but Gleason 9

im starting radiation on 20 November after a biochemical recurrence after surgery last December 

my doctors are still using the term curative intent although I think it’s fairly optimistic. I have two suspicious lymph nodes so they did not light up on the last scan.

how extensive is the lymph node involvement?

 

User
Posted 25 Jul 2026 at 18:44

I think I know what it means

I’m stage IV, Gleason 9, 2 pelvic lymph nodes lit up in June, 2024. 

Have had - 

30 cumulative months of ADT over 50 elapsed months since diagnosis. 

Immunotherapy at first called a cure; biochemical recurrence shot down that dream. 

Surgery - prostatectomy Dec 2024 despite lymph node involvement

Biochemical recurrence almost immediately after surgery and immediately upon cessation of ADT, which I had been on prior to, during, and for a short while after surgery 

Radiation, Nov - Dec 2024. 

PSA undetectable 4x - Apr May Jun July 2026 readings

FDG scan clean. I requested this scan because I had hip pain which I feared to be metastasis. 

I have one of the “special” type of tumors that on paper could possibly respond to immunotherap. it failed once, but that was after only four infusions. It’s a really long story while we stopped  the point is I may have another try at immunotherapy 

Currently I am on Lupron and Darolutamide 

My tumor harbors JAK, TP53, and PTEN variants. JAK is thought to be a driver of resistance to immunotherapy. PTEN and TP53 are drivers of castration resistance, distant metastasis, and morbidity. 

So - calling all optimists. Possible immunotherapy miracle aside, what reasons do I have to be optimistic?

I currently believe that castrate resistance is a matter of time and that once it arrives,  my countdown begins. 

Tell me you know one person who lived 10+ years after castrate resistance. 

User
Posted 26 Jul 2026 at 08:19
Thank you for sharing. We are all with you on this battle.

Sorry...not sure about meaning of these;ADT, castration resistance,biochemical recurrance. . How does immunotherapy work...?

LB

User
Posted 26 Jul 2026 at 08:39

Hello Bill

As far as I can make out : your current situation actually contains several encouraging features: your PSA has remained undetectable for months, your imaging is clear, and your present treatment is controlling the disease. None of that guarantees what happens next, but it means your cancer is responding—not escaping.

Castration resistance, if it eventually occurs, is an important milestone, but it is no longer the point where options disappear. Many men now receive several successive treatments over years, and there are documented patients who have lived more than 10 years after developing metastatic castration-resistant prostate cancer. They are not the majority, but they are real.

The future of your disease will depend on how your cancer behaves, not just on statistics associated with TP53, PTEN, or JAK alterations.  The best reason for optimism today is that your cancer is responding to therapy, and new treatment options continue to emerge.

Maybe you can give a few details of your immunotherapy -  I tried immunotherapy (that failed)

best regards

Crispin

 
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