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My journey to diagnosis

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User
Posted 06 Mar 2023 at 11:16

Just had a call from GP surgery to book me in to see GP next week to quote ' as a result of my diagnosis'.  Of course I asked what the diagnosis was as I do not see the urologist until this week Wednesday.  I was told cancer but no more details so I expect to get that on Wednesday at the hospital.


I was doing regular PSA due to father having prostate cancer at age of 73.  He survived for 20 years and the cancer wasn't what got him in the end.


My PSA results have been:


Apr 2015 1.9


Jan 2016 2.4


Oct 2018 2.8


Nov 2021 3.4


Referred for MRI with contrast- PIRADS3, prostate volume 60cc, suspicious lesion of 12mm left central node base but no extracapsular or nodal disease but due to size of prostate no further action until PSA above 9.


May 2022 3.2


Nov 2022 9.9


Referred for 3TMRI - PIRADS3, prostate volume 54cc, suspicious lesion of 9mm in right posterior peripheral zone, but due to severe UTI in July we decided to do a repeat PSA in Feb 2023 as rise might be due to UTI.


Feb 2023 8.95


Referred for TP targeted biopsy - carried out on 20th Feb.


I will ask about Gleason score, Stage, number of cores, treatment options.  Any advice on other things I should be asking about please?  I am a bit confused by the different lesion descriptions and locations from the two MRIs.


I am 62, on Tamsulosin for enlarged prostate.

User
Posted 23 Jan 2026 at 11:25

Hi, anyuser.


The good news is your PSA level has been relatively low and stable for the pat two years and the cancer is prostate confined.. The bad news is you've been upgraded from Gleason 6(3+3) to Gleason 7(3+4) and there appears to be new lesion(s).


Whatever you decide your active surveillance has served a purpose. It's given you two years of avoiding further treatment and the possible side effects of it. Plus your monitoring has identified possible disease progression.


Low volume, low grade Gleason 7 (3+4) is increasingly being  treated by active surveillance. Have your clinicians stated whether your situation is still safe to monitor?


Personally, on the information you've given, if it remains an option, I'd continue on AS., but I'm a bit of a risk taker.


If you decide its time for radical treatment, here's an excellent video link to possible treatment options. Its much easier to view what's available to you, rather than trawling through the written information you've been given.


https://youtu.be/zYTU94-8pTc?si=1Z29_l8rbTwF6DHl


If you view my profile you'll see that I was initially on AS, but unfortunately got much worse disease progression than you. I eventually had robotic surgery which, at present, seems to have done the trick.


Good luck, mate.👍

Edited by member 23 Jan 2026 at 11:44  | Reason: Typo

User
Posted 06 Mar 2023 at 14:10

Sorry you found out that way. Hospitals are usually quite careful with a flag in records to say if the patient has been told or not yet, but I guess they wrote to your GP without said flag. My hospital didn't write to my GP until after I'd been told.


Depending on your diagnosis so far (but in most cases anyway) they will probably do a bone scan at least, and possibly some other scans. Until you reach the end of the diagnosis, you won't know what treatment(s) may be appropriate, so there's likely still be some things to be done after your next appointment.

User
Posted 15 Mar 2023 at 12:03
Update : Gleason6(3+3), T1c, one core out of 18 positive (0.5mm), Put on Active surveillance.
User
Posted 05 Mar 2024 at 09:00

Short update. Had my annual MRI on 10 Feb and PSA on 12th. Nurse called yesterday 11 Mar. PSA is down to 6.15 which is good, but the MRI shows a new 'nodule' in the left transition zone (TZ). Apparently this area wasnt sampled in the biopsy last year. No PIRADS score allocated so going for MDT review next week, not sure why that wasnt done between the MRI and yesterday's call. Nurse is suggesting another biopsy, subject to MDT confirmation. Not looking forward to that again.

Edited by member 05 Mar 2024 at 09:01  | Reason: Not specified

User
Posted 04 Jul 2023 at 21:30
Nov 2022 9.9

Feb 2023 8.95

July 2023 9.6

Nice and stable - particularly as the biopsy & mpMRI were done after the PSA had peaked at 9.9 - I wouldn't be concerned if that was my dad.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Mar 2024 at 21:01
That's great news - congratulations
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Mar 2024 at 21:45

Really pleased for you anyuser.


Good luck for the future.


Derek

User
Posted 25 Jan 2026 at 10:50
If there are no other risk factors like EPE or cribriform etc. think in the grey area of continuing with AS or going for treatment the amount of patten 4 is an important value. GG2 with 3+4 and less than 10% of pattern 4 can be a positive indicator towards remaining on AS.

Be interesting to hear what your team recommends. Mine were supportive of choosing AS.
User
Posted 29 Jan 2026 at 18:37

Hi Adrian


First of all thanks for supporting so many on here and your vast knowledge.


We have Spoken/been on the same thread before.


So I had a meeting with a Consultant on Tuesday  Pirads 4 gleason 3+4. I learnt on Tuesday I had 5 out of 24 possitive on biopsy and a 10mm core of Gleason 4. 10% of total cancer . 12mm tumour 31cc prostate (sounds a large portion?)


When I  had the biopsy there were 2 lesions . They only found Cancer in one. Seeing a video from Doctor Emberton he says '' if it looks like cancer it is''.He also now does no biopsies assays if you do 10 biopsies on the same man they would through up different gleason every time. I had loads of leaflets from the hospital prior to my consultants meeting. one of which was an invite to join the PART study 50% get hifu type treatment 50% get radical treatment randomised. The consultant told me that has now been withdrawn as they would want another biopsy on the ''non cancerous lesion'' I don't want another biopsy so soon. 


I have veered back and forth from AS to radical and back over and over! my latest was have a nice summer... retire late summer then revisit regards prosectomy. Doc said he would AS


 


Thank you 


 


Mick

User
Posted 31 Jan 2026 at 07:45

Originally Posted by: Online Community Member
First of all thanks for supporting so many on here and your vast knowledge.


Cheers, mate. However my knowledge is very limited. I'm not medically trained and what I do know is limited to AS and RARP, through research and personal experience. Like the rest of you, I'm just a bloke who's had/got prostate cancer.


I know how frightening PCa can be. Trying to help others is perhaps my way of dealing with my own disease. 


There was another recent conversation on here about the suitability of having Gleason 7 (3+4) on active surveillance. This is a link to some research on that subject. It is good but very lengthy. 


https://pmc.ncbi.nlm.nih.gov/articles/PMC11034964/


I'm not sure, if I've mixed you up with someone else, but I think you once posted that my AS failure had caused you to question it's suitability for you.


Now, knowing what I do, I believe my AS failed because I was diagnosed and treated during Covid restrictions. Although the NHS deny it, I think things weren't done as thoroughly as they should have been. I believe my TRUS biopsy was very inaccurate, that aggressive cells had been missed and they weren't safely prostate contained. I know that the recommended 6 month follow up MRI, recommended by the MDT, had been over looked and was 14 months later than it should have been.


My AS failed through a poor initial diagnosis and poor monitoring. However, despite this, I'm still a great fan of AS, so long as  clinicians have deemed it suitable, and you are 'actively' monitored.


I never want my AS, tale of woe, to put others of it. I just want to warn men of the dangers of not having it done properly.


I hope this helps your decision making, and once again thanks for your kind remarks they are much appreciated.

Edited by member 31 Jan 2026 at 07:48  | Reason: Add link

User
Posted 31 Jan 2026 at 18:36

Thanks Adrian,


 


So much do think over . Not phased though.Have a great weekend


 


Mick

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User
Posted 06 Mar 2023 at 14:10

Sorry you found out that way. Hospitals are usually quite careful with a flag in records to say if the patient has been told or not yet, but I guess they wrote to your GP without said flag. My hospital didn't write to my GP until after I'd been told.


Depending on your diagnosis so far (but in most cases anyway) they will probably do a bone scan at least, and possibly some other scans. Until you reach the end of the diagnosis, you won't know what treatment(s) may be appropriate, so there's likely still be some things to be done after your next appointment.

User
Posted 06 Mar 2023 at 15:06
Thanks Andy,
I will make sure not to mention I know already on Wednesday, I dont want anyone to get into trouble.
User
Posted 15 Mar 2023 at 12:03
Update : Gleason6(3+3), T1c, one core out of 18 positive (0.5mm), Put on Active surveillance.
User
Posted 15 Mar 2023 at 19:33
Sounds very similar to me, 21 samples taken at biopsy, only 1 sample with cancer and only 1mm of the sample with 30% pattern 4, been on AS for a year just had my year 2 MRI and feedback from consultant, staying on AS. Make sure you have a clear AS plan, how often you have PSA checked, 3 monthly in year 1 is good, also make sure the AS is being managed by a urologist and expect to have another MRI in a year, good luck
User
Posted 15 Mar 2023 at 20:45
Thanks Juddy
Getting my appointments set up for PSA and MRI now and also have a CNS for any queries.
User
Posted 04 Jul 2023 at 19:38
Latest PSA 9.6 so fairly stable I think. Getting pressure from partner/friends/family to get second opinion from BUPA but not sure myself.
User
Posted 04 Jul 2023 at 21:09

Hi anyuser,


As far as I'm aware, a PSA of 9.6 seems quite high for someone on Active Surveillance, but perhaps other members of this forum who are more knowledgeable than I will offer their opinion.


Take good care of yourself.


Best wishes,


JedSee.

User
Posted 04 Jul 2023 at 21:30
Nov 2022 9.9

Feb 2023 8.95

July 2023 9.6

Nice and stable - particularly as the biopsy & mpMRI were done after the PSA had peaked at 9.9 - I wouldn't be concerned if that was my dad.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 05 Jul 2023 at 07:42
Thanks both, next appt is in Sept so will also see what they say then.
User
Posted 05 Jul 2023 at 10:11

PSA is not a very good measure of the severity of prostate cancer as I discovered over 12 years ago. My  PSA was 24 and Gleason score 3+4, 4+3. My tumour hadn't spread, I had prostatectomy over 12 years ago. I am afraid consultants don't always explain which lives patients to search for information as you are doing now. Good luck.

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate


 


 

User
Posted 05 Jul 2023 at 11:14
I believe that the stable PSA is a good sign. In my case it went from 6.8 (08/21) to 9.6 (investigations started) to 10.3 to 12.1 (05/23) just before the RARP. The 13 core biopsy suggested Gleason 3+4=7 PiRads 4 but after the histology lab did their bit it was 4+5=9 PiRads 5 so it was definitely actively growing and the PSA sort of backs that up.

Keep up the tests to keep an eye on it and here's wishing you the best of luck.
User
Posted 05 Jul 2023 at 12:35

Yes, thanks all.  In Sept I need to find out what a worrying rise in PSA would be.  Its not clear to me if there would be an absolute threshold of say 10 or 15 etc vs a certain rise over time to trigger anything more.

User
Posted 16 Aug 2023 at 19:15
3 monthly test today came back at 6.9 so down from 9.6 in May. So looking good for now, next test and MRI in Feb next year.
User
Posted 05 Mar 2024 at 09:00

Short update. Had my annual MRI on 10 Feb and PSA on 12th. Nurse called yesterday 11 Mar. PSA is down to 6.15 which is good, but the MRI shows a new 'nodule' in the left transition zone (TZ). Apparently this area wasnt sampled in the biopsy last year. No PIRADS score allocated so going for MDT review next week, not sure why that wasnt done between the MRI and yesterday's call. Nurse is suggesting another biopsy, subject to MDT confirmation. Not looking forward to that again.

Edited by member 05 Mar 2024 at 09:01  | Reason: Not specified

User
Posted 14 Mar 2024 at 16:24
No concerns from last MRI after MDT review so just on 6 monthly PSA tests now. No MRIs needed in future unless PSA changes.
User
Posted 14 Mar 2024 at 21:01
That's great news - congratulations
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Mar 2024 at 21:45

Really pleased for you anyuser.


Good luck for the future.


Derek

User
Posted 15 Mar 2024 at 18:11
Thank you all.
User
Posted 23 Jan 2026 at 08:46

Have been on active surveillance since diagnosis. PSA levels have been stable around 4.55 to 6 level and not as high as the 9.9 when diagnosed with Gleason 6(3+3), T1C.


 


update jan 2026
Sent for MRI in sept 2025. Results showed two new areas of concern so biopsy scheduled for December but actually happened in jan2026. Two new areas on left and right are Gleason 7(3+4) T2.


now have to decide on continuing AS or treatment 


if treatment leaning towards surgery


been given a week to think and read lots of leaflets they gave me.

User
Posted 23 Jan 2026 at 11:25

Hi, anyuser.


The good news is your PSA level has been relatively low and stable for the pat two years and the cancer is prostate confined.. The bad news is you've been upgraded from Gleason 6(3+3) to Gleason 7(3+4) and there appears to be new lesion(s).


Whatever you decide your active surveillance has served a purpose. It's given you two years of avoiding further treatment and the possible side effects of it. Plus your monitoring has identified possible disease progression.


Low volume, low grade Gleason 7 (3+4) is increasingly being  treated by active surveillance. Have your clinicians stated whether your situation is still safe to monitor?


Personally, on the information you've given, if it remains an option, I'd continue on AS., but I'm a bit of a risk taker.


If you decide its time for radical treatment, here's an excellent video link to possible treatment options. Its much easier to view what's available to you, rather than trawling through the written information you've been given.


https://youtu.be/zYTU94-8pTc?si=1Z29_l8rbTwF6DHl


If you view my profile you'll see that I was initially on AS, but unfortunately got much worse disease progression than you. I eventually had robotic surgery which, at present, seems to have done the trick.


Good luck, mate.👍

Edited by member 23 Jan 2026 at 11:44  | Reason: Typo

User
Posted 25 Jan 2026 at 10:13

Thank you, I will get more detail on the biopsy results on Friday and will be making the big decision soon.

User
Posted 25 Jan 2026 at 10:50
If there are no other risk factors like EPE or cribriform etc. think in the grey area of continuing with AS or going for treatment the amount of patten 4 is an important value. GG2 with 3+4 and less than 10% of pattern 4 can be a positive indicator towards remaining on AS.

Be interesting to hear what your team recommends. Mine were supportive of choosing AS.
User
Posted 28 Jan 2026 at 07:42

I received my letter from the consultant yesterday and am still going to speak to him on Friday.


Copying some detail from the letter:


 


in summary there are two lesions both Gleason 7 3+4 one in the left TZ 9 mm and one in the right PZ 6mm


still don’t know % 4 or number of cores yet


“MDT consensus is for radical treatment” - I think that means prostatectomy 


AS is an option but on the understanding treatment will be required later


HT/RT is an option also brachytherapy but focal treatments not suitable


i also have BUPA cover through work so that is a consideration also


 


 

Edited by member 28 Jan 2026 at 07:43  | Reason: Not specified

User
Posted 28 Jan 2026 at 10:00

It’s good you still have the option of waiting longer. I think you know what you want. Don’t let the MDT push you in a direction you are not fully behind. 

User
Posted 28 Jan 2026 at 10:21

Hi, anyuser.


There is disease progression, mate, that will need treating. It's just a case of when. I was on AS and had disease progression, which was so significant that to continue being monitored was no longer an option.


I think, if I were in your position, whilst it may still be safe now to be AS, I'd be considering radical treatment options


Good luck. 👍

Edited by member 01 Feb 2026 at 22:33  | Reason: Typo

User
Posted 29 Jan 2026 at 18:37

Hi Adrian


First of all thanks for supporting so many on here and your vast knowledge.


We have Spoken/been on the same thread before.


So I had a meeting with a Consultant on Tuesday  Pirads 4 gleason 3+4. I learnt on Tuesday I had 5 out of 24 possitive on biopsy and a 10mm core of Gleason 4. 10% of total cancer . 12mm tumour 31cc prostate (sounds a large portion?)


When I  had the biopsy there were 2 lesions . They only found Cancer in one. Seeing a video from Doctor Emberton he says '' if it looks like cancer it is''.He also now does no biopsies assays if you do 10 biopsies on the same man they would through up different gleason every time. I had loads of leaflets from the hospital prior to my consultants meeting. one of which was an invite to join the PART study 50% get hifu type treatment 50% get radical treatment randomised. The consultant told me that has now been withdrawn as they would want another biopsy on the ''non cancerous lesion'' I don't want another biopsy so soon. 


I have veered back and forth from AS to radical and back over and over! my latest was have a nice summer... retire late summer then revisit regards prosectomy. Doc said he would AS


 


Thank you 


 


Mick

User
Posted 29 Jan 2026 at 18:55

We are surprisingly similar. I am retired (65) don’t get the state pension until later this year. My biopsy results in my profile, but not too different from yours. 


First year of retirement plans didn’t include cancer treatment. So I’m definitely remaining on AS until at least the end of the year. Then we will have a look at the next MRI and review the PSA results. Hopefully prostate cancer is “very slow growing” holds true. If not RT for me. 

User
Posted 29 Jan 2026 at 19:40

Hi John


Lucky you my state pensions 67 im nearly 63.


yes /i ebb and flow ... I had a list of questions at the consultant meeting and didnt ask half of them. I have another meeting next week so will try harder. Idealy I would like to enjoy the summer . ultimately I want it gone 

User
Posted 31 Jan 2026 at 07:45

Originally Posted by: Online Community Member
First of all thanks for supporting so many on here and your vast knowledge.


Cheers, mate. However my knowledge is very limited. I'm not medically trained and what I do know is limited to AS and RARP, through research and personal experience. Like the rest of you, I'm just a bloke who's had/got prostate cancer.


I know how frightening PCa can be. Trying to help others is perhaps my way of dealing with my own disease. 


There was another recent conversation on here about the suitability of having Gleason 7 (3+4) on active surveillance. This is a link to some research on that subject. It is good but very lengthy. 


https://pmc.ncbi.nlm.nih.gov/articles/PMC11034964/


I'm not sure, if I've mixed you up with someone else, but I think you once posted that my AS failure had caused you to question it's suitability for you.


Now, knowing what I do, I believe my AS failed because I was diagnosed and treated during Covid restrictions. Although the NHS deny it, I think things weren't done as thoroughly as they should have been. I believe my TRUS biopsy was very inaccurate, that aggressive cells had been missed and they weren't safely prostate contained. I know that the recommended 6 month follow up MRI, recommended by the MDT, had been over looked and was 14 months later than it should have been.


My AS failed through a poor initial diagnosis and poor monitoring. However, despite this, I'm still a great fan of AS, so long as  clinicians have deemed it suitable, and you are 'actively' monitored.


I never want my AS, tale of woe, to put others of it. I just want to warn men of the dangers of not having it done properly.


I hope this helps your decision making, and once again thanks for your kind remarks they are much appreciated.

Edited by member 31 Jan 2026 at 07:48  | Reason: Add link

User
Posted 31 Jan 2026 at 18:36

Thanks Adrian,


 


So much do think over . Not phased though.Have a great weekend


 


Mick

 
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