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New Diagnosis - Thanks Clarksons Farm

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User
Posted 16 Oct 2026 at 06:57

So, here we go…PSA test in July which showed 11.5.  (Only had the test after watching Clarksons farm).

Prostate physical exam and further test 4 weeks later showed PSA 13.1.  Sent for Urology appointment and MRI.  MRI showed grey areas that needed further investigation. Urologist sent me for bone scan and biopsy.

Bone scan clear, but biopsies revealed high grade 5 cancer both sides of the prostate and Gleason score of 4+5.

Just awaiting a PET scan to see where it may have spread due to the right lymph node being involved and seminal vessels.

Oncologist already prescribed hormone treatment which I need to start after the PET scan.  What is a shock is I’m 56 and no symptoms. I have a slight dull ache in my groin, but I don’t know whether this is my mind telling me I have cancer and should be feeling something.

I need to be on this hormone treatment and other meds depending on what the PET scan shows for 3-6 months before they start radiotherapy and possibly chemo. 

Didn’t know anything about this disease, but sites like these are so helpful.  Much harder on the people around you.

User
Posted 16 Oct 2026 at 09:33

Hi, Lee.

I'm sorry, that you've found yourself in the club no-one wants to join, but welcome to the forum, mate.

There are plenty on here that have a similar diagnosis to yours, and there have been plenty of conversations on T3a/T3b disease with possible lymph node/seminal vesicle involvement. I will try and find some, and add links to them.

I hope your bone scan results are favourable.

There are also plenty of guys on here who've dealt with capsular breach and Gleason 9 (4+5). I'm one of them. 

You are right, this disease also affects your loved ones. I often think its more difficult for them to deal with than the person with it.

Although, I'm not the greatest fan of Jeremy Clarkson. I'm glad that his story led to you getting tested. The earlier you deal with the disease the better the outcome.

Please keep us updated and good luck, mate.👍

User
Posted 16 Oct 2026 at 11:31

Hi Lee

Sorry to find yourself here but it is a great place to be when in this predicament!

As Adrian says - hopefully early diagnosis can get you sorted..dependant on those other scans etc.

You can see our individual stories by clicking on our names/roundels, and you might be able to see how others are dealing with things.

Cannot agree more about the impact on our OH and family - it can be devastating for them.  But please make sure that any "searching" is via proper sites like this one, MacMillan, CRUK. Stay away from Google - the information is aggregated from many years worth of info and the most recent stuff is not necessarily well covered. Advances over recent years mean the data is skewed.

The benefit of "celebrity" cases is really important to get the message out to get tested...

I was asymptomatic, PSA 953 and am T3N1M1a Grade group 5, Gleason (4+5) - all a bit of a shock a year ago, but am on Triplet Therapy and start Radiotherapy next month. PSA now undetectable - so treatment is working!!

Best wishes - stay positive

CeePee

User
Posted 16 Oct 2026 at 12:14

My PSA was 8.2. Diagnosis Gleason 9. Cambridge 5. Cribriform so dangerous.

All scans clear. HT injection of Prostap. BUT....two months in my PSA had gone down to 0.1...!!!

So don`t despair. The HT can really work. Let the NHS do their work. They have been amazing. 

Keep us all updated and check in often for positive vibes.

Stay strong. Do not despair...!!

User
Posted 16 Oct 2026 at 11:53

Hi again Lee.

Here, as promised, are the links to just a couple of the conversations we've had on T3b disease. There have been a lot more, but at this minute, I'm struggling to find them

https://community.prostatecanceruk.org/posts/t30899-Tb3-prostate-cancer

https://community.prostatecanceruk.org/posts/t30083-Local-advanced-prostate-cancer---treatment-pathway-qu

 

Edited by member 16 Oct 2026 at 11:55  | Reason: Add link

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User
Posted 16 Oct 2026 at 09:33

Hi, Lee.

I'm sorry, that you've found yourself in the club no-one wants to join, but welcome to the forum, mate.

There are plenty on here that have a similar diagnosis to yours, and there have been plenty of conversations on T3a/T3b disease with possible lymph node/seminal vesicle involvement. I will try and find some, and add links to them.

I hope your bone scan results are favourable.

There are also plenty of guys on here who've dealt with capsular breach and Gleason 9 (4+5). I'm one of them. 

You are right, this disease also affects your loved ones. I often think its more difficult for them to deal with than the person with it.

Although, I'm not the greatest fan of Jeremy Clarkson. I'm glad that his story led to you getting tested. The earlier you deal with the disease the better the outcome.

Please keep us updated and good luck, mate.👍

User
Posted 16 Oct 2026 at 11:31

Hi Lee

Sorry to find yourself here but it is a great place to be when in this predicament!

As Adrian says - hopefully early diagnosis can get you sorted..dependant on those other scans etc.

You can see our individual stories by clicking on our names/roundels, and you might be able to see how others are dealing with things.

Cannot agree more about the impact on our OH and family - it can be devastating for them.  But please make sure that any "searching" is via proper sites like this one, MacMillan, CRUK. Stay away from Google - the information is aggregated from many years worth of info and the most recent stuff is not necessarily well covered. Advances over recent years mean the data is skewed.

The benefit of "celebrity" cases is really important to get the message out to get tested...

I was asymptomatic, PSA 953 and am T3N1M1a Grade group 5, Gleason (4+5) - all a bit of a shock a year ago, but am on Triplet Therapy and start Radiotherapy next month. PSA now undetectable - so treatment is working!!

Best wishes - stay positive

CeePee

User
Posted 16 Oct 2026 at 11:37

Hi Lee,

 

Sorry you find your self here, but as you say there's lots of great help, advice and information on this site.

Your're right it's hard on the people round you, I think because they feel helpless as to how to help you. At least as the one with PC you're being prodded and probed (literally!) and treated.

I was diagnosed at 48 with no symptoms (I had a very through specialist nurse as my GPs). a great shock. T3b so seminal vesicle involvement. EBRT, Brachytherapy and 2 years of HT (Zoladex) which I've just finish.

One positive is I very much have a greater appreciation for life. Not putting off things I want to do as a family and for myself.

All the best

John

User
Posted 16 Oct 2026 at 11:53

Hi again Lee.

Here, as promised, are the links to just a couple of the conversations we've had on T3b disease. There have been a lot more, but at this minute, I'm struggling to find them

https://community.prostatecanceruk.org/posts/t30899-Tb3-prostate-cancer

https://community.prostatecanceruk.org/posts/t30083-Local-advanced-prostate-cancer---treatment-pathway-qu

 

Edited by member 16 Oct 2026 at 11:55  | Reason: Add link

User
Posted 16 Oct 2026 at 12:14

My PSA was 8.2. Diagnosis Gleason 9. Cambridge 5. Cribriform so dangerous.

All scans clear. HT injection of Prostap. BUT....two months in my PSA had gone down to 0.1...!!!

So don`t despair. The HT can really work. Let the NHS do their work. They have been amazing. 

Keep us all updated and check in often for positive vibes.

Stay strong. Do not despair...!!

 
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