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User
Posted 10 Nov 2026 at 21:07

Hi, my husband Lee, 58 years, was diagnosed yesterday with prostate ca. 

His journey started a year ago with increase in urine frequency & GP did a PSA. It was 4.75. & second one was 5.3. 

2 week wait pathway for an MRI & urology referral. 
The MRI showed no focal tumour but from the report 

26cc prostate, density 0.21, PIRADS 2, IPSS 16. 

Urology put him on antibiotics with follow up PSA & urine flow test. 

His PSA this year has been 5.8, 4.95 & 4.8. 

Consultant decided on a 2nd MRI in Oct - due to an area considered to be borderline - one week later he had (I believe) to be around 10-12 biopsies of both sides of his prostrate. 

Results show 3+4 - cancer present on both sides. 

They have given him 4 options. Active surveillance, prostatectomy, radiotherapy or the seed therapy. 

I think his preference is AS, although we’re both worried about this. I don’t think either of us (but it’s his decision) is keen on radiotherapy due to downstream issues, & prostatectomy he’s so worried about because of the altering QOL. 

I’m concerned though about the change between January & October MRI - unless there isn’t one (a question I will be asking). I don’t have the latest MRI details only his scoring.

I read that the grading can be inaccurate? Some people getting biopsies reviewed privately. 

Sheffield is a good centre/teaching hospital - I probably do have faith in them. But we’re feeling just a little lost. 

We’re speaking to specialist nurse on Thursday, any key questions you guys feel would be good for us to ask would be helpful, 

thank you Rachel 

Update from 12 Nov

Tonight we received a copy of the letter sent to his GP. 

 

Biopsies show 11 mm peripheral zone lesion

 

Maximum core 6 mm

 

T2N0
5% level 4.
No cribriform

 

3/7 cores right side 2/10 left side 
No extra prostatic extension 

 

This is probably why they have offered AS in his options.

Edited by member 13 Nov 2026 at 09:45  | Reason: Not specified

User
Posted 11 Nov 2026 at 11:53

Hi again Rachel

Thank you for your kind remarks.

Yeah, my active surveillance was a failure. However, I now believe it failed mainly due to to a poor first biopsy. The consultant who did it must have been a lousy darts player and missed a lot of the higher numbers. 🙂

Secondly my active surveillance wasn't active enough. They initially meant to book me in for a follow up MRI six months after diagnosis, but forgot about it. It was done 14 months later than it should have been. I was unlucky.

Having said that, I'm a great fan of AS, as long as the patient is correctly monitored. It's becoming a more popular way of dealing with low grade, low volume, prostate confined disease.

https://www.cancer.gov/news-events/cancer-currents-blog/2022/prostate-cancer-active-surveillance-increasing

No matter what treatment you have there are risks involved. There's about a 30% recurrence rate for those who have radical treatments.

The beauty of AS is you can change your mind at any time and go for a more radical treatment. You do need a certain mindset to be able to live knowing you've got the disease but got faith that it won't develope. About 50% of those on AS, after 10 years, have not required further treatment. They seem pretty good odds to me, especially as AS eliminates most of the serious side effects of surgery, radiotherapy and hormone treatment.

In my opinion AS gets bad press on here. Rarely do we hear what a great option it is. We only only hear horror stories of how it's failed. This bias is made worse because those who've found AS successful, have no need to be on the forum. They are too busy leading their lives virtually unscathed by the disease.

As regards getting copy of your MRI scan. I think it's a good idea to get copies of all results, especially biopsy reports. It can be difficult to keep track of and remember test results. Keeping copies and written records helps enormously. I've got a full folder of mine. 🙂

Edited by member 11 Nov 2026 at 11:58  | Reason: Typo

User
Posted 11 Nov 2026 at 09:26

Hi, Rachel.

I'm sorry to see that your husband has been diagnosed with prostate cancer. However, its great that you've joined the forum, to support him. Welcome.

As you're probably aware, his PSA is relatively low, appears to be stable and is just above the abnormal range. His prostate size is on the small side of the normal range.The cancer is confined to the prostate, which is very good.

For my own peace of mind, the questions I'd be asking your specialist nurses, is where the tumour(s) are situated within the prostate. How close are they to the outer layer of the prostate capsule. How big they are. How many of the biopsy the cores were positive, and what percentage of each positive core was cancerous.

Your multidisciplned team should have looked at all these factors and have deemed him suitable for active surveillance. Personally I'd take that option.

There is no rush to decide on what treatment to take. Here's an excellent video of various treatment options and the pros and cons of each.

https://youtu.be/zYTU94-8pTc?si=xW83bOb0AVFQFD2l

In answer to the possible inaccuracy of the Gleason score. With biopsies there is always a chance that more cancerous cells have been missed. You could ask your specialist nurse, if in your husband's case, a second opinion of his results would be worthwhile?

Whatever treatment you decide, I wish you both good luck and please keep us updated. 👍

Edited by member 11 Nov 2026 at 09:27  | Reason: Add link

User
Posted 12 Nov 2026 at 19:41

Thank you Adrian, I have just read this through this extensive research. Interesting how other countries classify what is low/intermediate risk e.g if we lived in Australia he would be classed as low risk.

Tonight we received a copy of the letter sent to his GP. 

Biopsies show 11 mm peripheral zone lesion

Maximum core 6 mm

T2N0
5% level 4.
No cribriform

3/7 cores right side 2/10 left side 
No extra prostatic extension 

This is probably why they have offered AS in his options.

thank you for taking the time to share info & respond. 

 

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User
Posted 11 Nov 2026 at 09:26

Hi, Rachel.

I'm sorry to see that your husband has been diagnosed with prostate cancer. However, its great that you've joined the forum, to support him. Welcome.

As you're probably aware, his PSA is relatively low, appears to be stable and is just above the abnormal range. His prostate size is on the small side of the normal range.The cancer is confined to the prostate, which is very good.

For my own peace of mind, the questions I'd be asking your specialist nurses, is where the tumour(s) are situated within the prostate. How close are they to the outer layer of the prostate capsule. How big they are. How many of the biopsy the cores were positive, and what percentage of each positive core was cancerous.

Your multidisciplned team should have looked at all these factors and have deemed him suitable for active surveillance. Personally I'd take that option.

There is no rush to decide on what treatment to take. Here's an excellent video of various treatment options and the pros and cons of each.

https://youtu.be/zYTU94-8pTc?si=xW83bOb0AVFQFD2l

In answer to the possible inaccuracy of the Gleason score. With biopsies there is always a chance that more cancerous cells have been missed. You could ask your specialist nurse, if in your husband's case, a second opinion of his results would be worthwhile?

Whatever treatment you decide, I wish you both good luck and please keep us updated. 👍

Edited by member 11 Nov 2026 at 09:27  | Reason: Add link

User
Posted 11 Nov 2026 at 11:09

Thank you Adrian - you are so good in replying to people & supporting folk. I don’t think you realise just how much that helps people. 

I have just read your own story, you have been through a lot - & through yet pandemic. But sounds like you are winning! 
Your story also concerns me, as it appeared from the info you shared that within 2 years you had quite some progression? That is our concern with AS. 

Thanks for the suggestions to ask. I am going to ask for a copy of both MRI results. 

Thanks Rachel 

User
Posted 11 Nov 2026 at 11:18

Hi Just wanted to say a thank you to Mick W who sent me a private message - it won’t let me reply as a new member until I’ve participated more in the site. 
I hear your message loud & clear about being an advocate for one’s health. Having been on my own personal health journey I am well versed in this - & will now help my husband. Thanks again . 

User
Posted 11 Nov 2026 at 11:53

Hi again Rachel

Thank you for your kind remarks.

Yeah, my active surveillance was a failure. However, I now believe it failed mainly due to to a poor first biopsy. The consultant who did it must have been a lousy darts player and missed a lot of the higher numbers. 🙂

Secondly my active surveillance wasn't active enough. They initially meant to book me in for a follow up MRI six months after diagnosis, but forgot about it. It was done 14 months later than it should have been. I was unlucky.

Having said that, I'm a great fan of AS, as long as the patient is correctly monitored. It's becoming a more popular way of dealing with low grade, low volume, prostate confined disease.

https://www.cancer.gov/news-events/cancer-currents-blog/2022/prostate-cancer-active-surveillance-increasing

No matter what treatment you have there are risks involved. There's about a 30% recurrence rate for those who have radical treatments.

The beauty of AS is you can change your mind at any time and go for a more radical treatment. You do need a certain mindset to be able to live knowing you've got the disease but got faith that it won't develope. About 50% of those on AS, after 10 years, have not required further treatment. They seem pretty good odds to me, especially as AS eliminates most of the serious side effects of surgery, radiotherapy and hormone treatment.

In my opinion AS gets bad press on here. Rarely do we hear what a great option it is. We only only hear horror stories of how it's failed. This bias is made worse because those who've found AS successful, have no need to be on the forum. They are too busy leading their lives virtually unscathed by the disease.

As regards getting copy of your MRI scan. I think it's a good idea to get copies of all results, especially biopsy reports. It can be difficult to keep track of and remember test results. Keeping copies and written records helps enormously. I've got a full folder of mine. 🙂

Edited by member 11 Nov 2026 at 11:58  | Reason: Typo

User
Posted 11 Nov 2026 at 19:16

Thanks again Adrian 

The article is interesting, although the criteria for AS in this article (America) is low 3+3. Not 3+4 as my husbands is. Plus the large number of those that have treatment at the 5 year mark. The urologist suggested Lee has had his ca for a few years.

Tonight is the first time we’ve chatted about it since the shock of Monday. 

Key questions for me is whether there has been much change between the Jan & Sept MRI. 

Will watch the YouTube videos cheers 

User
Posted 11 Nov 2026 at 21:37

Originally Posted by: Online Community Member
The article is interesting, although the criteria for AS in this article (America) is low 3+3. Not 3+4 as my husbands is.

I apologise Rachel, you are correct. I'm having a bad day at the office.  I've bookmarked several links to AS for low risk and intermediate disease and posted the wrong one.😔

This one refers to research on AS and Gleason 7(3+4)  and is relevant to your husband.

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

Although those with favourable intermediate risk disease are suitable for AS, the outcomes aren't as good as those with low risk disease.

Edited by member 11 Nov 2026 at 22:48  | Reason: Typo

User
Posted 12 Nov 2026 at 00:05

This is our experience ,Gleason 3+4 duagnised Apr 25 , psa 11, 3 monthly psa tests psa hovers around  10 or 11 so we thought everything was fine . March 26 routine MRI picks up growth in areas already seen was the text we received . Apr 26 biopsy high volume cancer . End of may 26 saw dr decided on surgery , will have to be non nerve sparing as lots of cancer there .   July 2nd was surgery which was far less scary than husband anticipated , recovery had been  really good  ,telephone call from dr august surgery went well histology Gleason still  3+4, cancer right up to edge  of prostate,  back to work by Oct , first psa blood test after prostatectomy 0.193 not what we were expecting  so now got to wait 8 weeks for another test to see if he needs  radiotherapy . Would we be here if he had had operation  straight away and not done a year on active surveillamce, no i  dont think he would . I would advise anyone avoid active surveillance . 

User
Posted 12 Nov 2026 at 02:31

Hi there. For what it's worth, I personally am not a fan of AS with a Gleason of anything higher than 3+3.

 

When my PCA was diagnosed, my psa was 12.7, Gleason 4+3 w/ Cribriform and my staging was already T3a. All of this meant that I am facing a high liklihood of recurrence (had surgery in Aug '24) down the road. I WISH my cancer had been found earlier so I would have had better odds being cured by treatment. The earlier cancer is treated, the better one's chances are of being cured - so why wait and give cancer the upper hand?

 

What IS good about your husband's position is he has some time to research treatment options and surgeons so he can find a treatment option plan he is comfortable with. Even with AS, treatment is going to be necessary sooner or later.

User
Posted 12 Nov 2026 at 08:15

Basically, intermediate risk, Gleason 7(3+4) is either 'favourable' or 'unfavourable' for AS.

Those deemed favourable:

If the cancer has low volume and lacks aggressive architectural traits. No cribriform, or intraductual or perineural invasion

A very low amount of Gleason pattern 4—typically less than 10% of the total cancer volume (or 5% or less in many strict protocols).

Core Involvement: Cancer is found in only a small number of biopsy cores.

PSA Levels: under 10 ng/mL.

MRI Findings: Shows localized disease (e.g., clinical stage T2a)

Those deemed unfavourable.

Grade 4 Percentage: A higher proportion of Gleason pattern 4 approaching or exceeding 10% to 50% of the core sample. (Gleason 7 (4+3) Grade Group 3, it is automatically classified as unfavorable)

Core Involvement: Involvement of multiple biopsy cores or bilateral disease (cancer in both lobes)

Higher PSA levels, typically in the 10 to 20 ng/mL range (or rising rapidly).

MRI scans showing tumours in both lobes of the prostate or extension past the prostate capsule (T2c, or higher).

Presence of cribriform growth patterns, perineural invasion, or intraductal carcinoma.

In Rachel's opening post she mentions that her husband has been deemed suitable for AS,  and that it is his prefered treatment option.

In answer to her question, "Is there any questions that I could ask the specialist nurse?"

To double-check that AS was an option for her husband. I'd be asking how many of his biopsy cores were postive and what percentage were grade 4. I'd also be asking why, when he has T2c disease, cancer in both lobes, they are considering AS.

If you look at my bio, you'll see that I was initially diagnosed, PSA 5.6, T2a, prostate confined, apparently low volume, low grade, Gleason 6 (3+3) prostate cancer. I appeared to be the perfect candidate for AS.

The MDT recommended AS and I opted for it.

Only two years later, a very delayed follow up MRI resulted in a second biopsy, which revealed significant disease progression. I was now in a very precarious position. PSA only 7, but Gleason 8 (3+5), later upgraded to Gleason 9. (4+5), capsular breach (EPE extracapsular extension) T3a staging.

If anyone should be advising against AS, you'd have thought it would be me, but I'm not. I believe my AS failed because, my initial diagnosis was incorrect. I was T2c (cancer in both prostate lobes) not T2a. My biopsy missed the higher grade cancer cells and my follow up monitoring was woeful. 

https://community.prostatecanceruk.org/posts/t29997-T2c-disease-and-active-surveillance

The biggest trial involving AS was the Protect trial, comparing the outcomes of those on AS to those having radiotherapy and HT, and those having surgery. The outcomes were very similar for all three groups. Those on AS were initially thought to be all Gleason 6, but research has shown that almost 20%, some say even much higher, were Gleason 7 (3+4) or greater. Ten years later, 44% of those on AS had no need for further radical treatment.

As I said before, you often see horror stories of AS on this forum, but they are the exception not the rule. 

AS is often portrayed on here as 'only kicking the can down the road', that's simply unfair. Many men on AS never need further treatment and for those that do, being on it has often given them years of being free from side effects from radical treatments.

Of course its always beneficial to be catch prostate cancer as soon as possible, but for many men, trying to obliterate it at all costs, is not the answer.

For a far more balanced and researched opinion on AS, people would be better advised to read our site's thoughts on it, rather than relying on anecdotal evidence.

https://prostatecanceruk.org/for-health-professionals/resources/active-surveillance-hub/evidence-based-resources

 

Edited by member 12 Nov 2026 at 20:31  | Reason: Add link

User
Posted 12 Nov 2026 at 19:41

Thank you Adrian, I have just read this through this extensive research. Interesting how other countries classify what is low/intermediate risk e.g if we lived in Australia he would be classed as low risk.

Tonight we received a copy of the letter sent to his GP. 

Biopsies show 11 mm peripheral zone lesion

Maximum core 6 mm

T2N0
5% level 4.
No cribriform

3/7 cores right side 2/10 left side 
No extra prostatic extension 

This is probably why they have offered AS in his options.

thank you for taking the time to share info & respond. 

 

User
Posted 12 Nov 2026 at 19:42

Thank you for taking the time to respond. Yes my hours are being taken up by reading all about a topic that this time last month was not even on our radar! 

User
Posted 13 Nov 2026 at 07:56

Originally Posted by: Online Community Member
Tonight we received a copy of the letter sent to his GP. 

Biopsies show 11 mm peripheral zone lesion

Maximum core 6 mm

T2N0

5% level 4.

No cribriform

3/7 cores right side 2/10 left side 

No extra prostatic extension 

This is probably why they have offered AS in his options.

Hi again, Rachel.

Your husband's, PSA is relatively low, well below 10, and has remained stable for the past two years. His Grade 4 is only 5%, no cribriform, 29% of cores positive (being under 50%), and the disease being prostate contained, are all factors that put him in the favourable intermediate risk group for AS.

However, as far as I'm aware cancer being found in both lobes, T2c disease, is an unfavourable factor and maybe worth questioning? It's likely that the MDT have weighed up all the favourable factors against the single unfavourable factor and deemed AS is a suitable option.

If I were in your husband's position, I'd want to know exactly where the lesions were in the prostate. If they are they very safely contained. I would chance AS, but ensure I was closely monitored. 

Edited by member 13 Nov 2026 at 10:46  | Reason: Typo

User
Posted 13 Nov 2026 at 21:25
Thanks again for your helpful comments Adrian.

I have all our questions lined up for Monday, with concerns & more info required about both sides.

I would like more info on focal therapy too.,

User
Posted 13 Nov 2026 at 22:18

Hi again, Rachel 

This seems to be a made to measure video for you and your husband, on Gleason 7 (3+4), active surveillance and HIFU.

https://youtu.be/YoTiwJMYqc8?is=8Ygpka0_I5Cmb_cf

I hope it helps.

There have been quite a few conversations on here about HIFU. Old Barry knows a lot about this sort of treatment.

https://community.prostatecanceruk.org/posts/t31891-HIFU-experiences

Good luck on Monday. 👍

Edited by member 14 Nov 2026 at 10:54  | Reason: Add conversation link.

 
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