New Diagnosis - Thanks Clarksons Farm - Being diagnosed with prostate cancer

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

User

Posted 19 Oct 2026 at 09:00

Hi CeePee,

Someone I know mentioned numbing cream to me too after I'd had a few injections, I never asked the nurse in the end, I think my increasing tummy fat over time helped ease the soreness🤣

User

Posted 21 Oct 2026 at 19:53

Hi John,

It’s relugolix at the start. I had my PET scan this morning and took the three tablets straight after.

Have a phone consult with the oncologist tomorrow to report on the scan and direct what other meds I’ll be on. I know the bone scan is clear, but it may have spread elsewhere. I’ll know more tomorrow 😬

User

Posted 21 Oct 2026 at 19:57

Hi Lee

Best wishes for tomorrow.

Whatever the outcome there will be a plan to get it sorted..

All the best

Best wishes - stay positive

CeePee

User

Posted 22 Oct 2026 at 08:18

Hi Lee,

Hope all goes well today, and great news on your bone scan

I think Relugolix is an alternative to Zoladex, it acts quicker, but also wears off quicker than Zoladex when you stop taking it

all the best

John

User

Posted 22 Oct 2026 at 08:54

Hi, Lee.

Great bone scan result. I can remember how relieved I was when mine came back all clear.

Hope all goes well, today, mate.👍

User

Posted 22 Oct 2026 at 15:24

Hi Lee

That is great bad news!!!
You have a plan going forward and now you can just get on with life…

I am not too dissimilar- Mets in Lymph nodes to pelvis and abdomen which have been hit with chemo and HT so far and RT next month to prostate gland to “kill off the mother ship” as my consultant says. My PSA is undetectable after a year. T3M1N1a and grade group 5, initial PSA 953 a year ago ( in fact I think it is the first anniversary of my Zoladex injection today!)

Best wishes - stay positive

CeePee

User

Posted 23 Oct 2026 at 10:26

I have been put on Abiraterone and Prednisolone as well as although mine hasn`t spread it is Gleason 9 cribriform structure ...which is highly likely to break up and spread.

No side effects of either drug. But beware of dietary restrictions.

I know on the scale of things that is very little to worry about...but it can be damn annoying...!

No marmalade on toast for two years...! Also I am addicted to liquorice but that that is also strictly banned. No heath supplements either. Look up the rest. You want the Abiraterone to be doing its great work without complications.

Good luck. Stay strong. There are so many ways to kill this beast...

User

Posted 23 Oct 2026 at 11:29

Originally Posted by: Online Community Member

I’m officially T3bN1M0, so hopefully the hormone treatment will stop the spread and I can hold this PCa at bay to see my daughter get through her exams and then even possibly A levels and uni. Much more positive than I was last week about the near future.

Hi again, Lee.

Most of us have felt much better after getting a treatment plan. It takes away of a lot of uncertainty, and gives you something to focus on.

Best of luck to you, your daughter and the rest of your family. 👍

Show Most Thanked Posts

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.

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.

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

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...!!

User

Posted 17 Oct 2026 at 12:01

Hi all,

Many thanks for all your comments, they were really helpful.

Still waiting for my PET scan so I can start on the hormone tablets. All depends on the PET scan to see what other meds I could be on.

I can see from various posts that I’ll have injections, but I don’t think this was mentioned in my last consultation.

I just want to know what I’m dealing with so I can get my head around it…

User

Posted 19 Oct 2026 at 08:28

Hi Lee,

Are the tablets you're starting bicalutamide? If so these are normally given before stating injections of Zoladex/Prostap.

The reason being is the injections can initially cause a spike in your testosterone levels. Bicalutamide stops testosterone binding with the androgen receptors on prostate cancer cells. The injections then stop you producing testosterone.

My first injection lasted 4 weeks, just to see if I had any bad reactions to it. I was then given the option to carry on with 4 weekly injections or switch to a 12 week dose.

I went with 12 weeks, it avoided having to arrange more appointments, and obviously reduced the number of times I was stabbed with quite a large needle! My were injected in my tummy fat, alternating sides each time.

I think there are other daily tablets you can have rather than the injections, but this was never mentioned as an option for me.

John

User

Posted 19 Oct 2026 at 08:35

Hi John

Spot on with that I suspect…

Yep - a couple of weeks of Bicalutamide then onto the Zoladex for me ( first one almost exactly a year ago). 12 weekly from the outset.

I was chatting to the nurse as she was jabbing me in the tummy (I just need a bit of fat was what she said!!) about how sore the injection can be and she mentioned that one of her patients always uses a numbing cream beforehand to reduce the discomfort of the injection- I might give that a go…

Best wishes - stay positive

CeePee

User

Posted 19 Oct 2026 at 09:00

Hi CeePee,

Someone I know mentioned numbing cream to me too after I'd had a few injections, I never asked the nurse in the end, I think my increasing tummy fat over time helped ease the soreness🤣

User

Posted 19 Oct 2026 at 09:20

Hi John,

Many thanks.

I'm going to be starting on Relugolix and then subject to the PET scan, I’ll be going on to abiraterone or apalutamide.

im not sure if the latter two will be injection or tablet form though.

User

Posted 21 Oct 2026 at 19:53

Hi John,

It’s relugolix at the start. I had my PET scan this morning and took the three tablets straight after.

User

Posted 21 Oct 2026 at 19:57

Hi Lee

Best wishes for tomorrow.

Whatever the outcome there will be a plan to get it sorted..

All the best

Best wishes - stay positive

CeePee

User

Posted 22 Oct 2026 at 08:18

Hi Lee,

Hope all goes well today, and great news on your bone scan

I think Relugolix is an alternative to Zoladex, it acts quicker, but also wears off quicker than Zoladex when you stop taking it

all the best

John

User

Posted 22 Oct 2026 at 08:54

Hi, Lee.

Great bone scan result. I can remember how relieved I was when mine came back all clear.

Hope all goes well, today, mate.👍

User

Posted 22 Oct 2026 at 14:59

Hi,

Quick update….

The PET scan shows that the cancer has spread to all the lymph nodes in the pelvic region, but no cancer shown anywhere else outside of the pelvic area.

The oncologist is going to put me on Abiraterone and Prednisolone for two to three months and then I go to get nuked.

Thanks for all the comments and advice, it is very much appreciated.

Lee

User

Posted 22 Oct 2026 at 15:24

Hi Lee

That is great bad news!!!
You have a plan going forward and now you can just get on with life…

Best wishes - stay positive

CeePee

User

Posted 23 Oct 2026 at 10:26

I have been put on Abiraterone and Prednisolone as well as although mine hasn`t spread it is Gleason 9 cribriform structure ...which is highly likely to break up and spread.

No side effects of either drug. But beware of dietary restrictions.

I know on the scale of things that is very little to worry about...but it can be damn annoying...!

Good luck. Stay strong. There are so many ways to kill this beast...

User

Posted 23 Oct 2026 at 11:29

Originally Posted by: Online Community Member

Hi again, Lee.

Most of us have felt much better after getting a treatment plan. It takes away of a lot of uncertainty, and gives you something to focus on.

Best of luck to you, your daughter and the rest of your family. 👍

User

Posted 04 Nov 2026 at 21:18

Hi all, a quick update and query….

I had my meeting with the oncology team who took bloods etc and told me to pick up my meds tomorrow. They are giving me Lanzoprazole, Abiraterone and Prednisone. They will tell me how to take it with my other meds when I pick it up tomorrow. However, I’m also on statins, blood pressure meds and Relugolix.

I think I’ll be taking all the meds bar the Prednisone when I wake up. I wait an hour, eat something and then take the Prednisone.

Does this sound about right?

Cheers in advance.

Lee

User

Posted 04 Nov 2026 at 23:58

Hi Lee

It is a nightmare making sure you take the right tablets at the right time with/ without food, an hour before etc etc. And to be honest I would just ask the pharmacist when you pick them up to go through all of them , when to take with what etc etc. When I used to get my meds from the pharmacist when I was having chemo that is exactly what I did and occasionally got them to write it down or write it on the boxes.

I also used to use the reminder function on my phone to help! You can set the text for each reminder at differing times throughout the day if necessary.

I do know that Lansoprazole was 30-60 minutes before food for me and some of my other meds are with/after food, but I am on different stuff to you ( Darolutamide). I take my statins first thing and last thing. My AdCal ( calcium) I take twice a day but I have to have it two hours after any cereal products, so after my porridge !

It can get complicated!!!

Best of luck with it all, that PSA will be on the floor in no time…

Best wishes - stay positive

CeePee

User

Posted 05 Nov 2026 at 08:28

Lee, I’m T3b N1, with a PSA of 252 and SVI at presentation in January 2022.
Feel free to PM me if you want further details.

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New Diagnosis - Thanks Clarksons Farm

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