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Has anyone been on AS for several years?

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User
Posted 08 Mar 2025 at 09:30

So in short,  shock diagnosis of PC 2 days ago,  psa 1.47,  but DRE found something and MRI found a pirads 4 lesion which the targeted biopsy confirmed as Gleason 6, (10 of 25 cores).  My consultant said Active Surveillance was the only way forward for me and anything else would be overkill.  I have to say I’m still not 100% comfortable with knowing it’s still there.  I do have Bupa cover through work so may be able to push for RALP via that but still very early days so wanted feedback from others on AS.

User
Posted 08 Mar 2025 at 09:30

So in short,  shock diagnosis of PC 2 days ago,  psa 1.47,  but DRE found something and MRI found a pirads 4 lesion which the targeted biopsy confirmed as Gleason 6, (10 of 25 cores).  My consultant said Active Surveillance was the only way forward for me and anything else would be overkill.  I have to say I’m still not 100% comfortable with knowing it’s still there.  I do have Bupa cover through work so may be able to push for RALP via that but still very early days so wanted feedback from others on AS.

User
Posted 08 Mar 2025 at 21:10

Hi, I’ve been on A/S for nearly 8 years, I was diagnosed when I was 50 with 3 + 3, PSA 6.8, my diagnosis has recently changed, recent MRI has shown pirads 4 and last biopsy was 3 + 4, I’m now having surgery next month to remove my prostate, I was happy to be on A/S, I had a MRI every year, PSA every 3 to 6 months and a Trus biopsy, template biopsy and a perineal biopsy in that time. 

User
Posted 08 Mar 2025 at 23:17

Anyone on AS can change to active treatment at any time on the NHS, even if the cancer hasn't changed. Your consultant was wrong to say AS was the only way forward, but could be correct that any treatment would be over treatment in your case.

AS is not a risk-free strategy, because we are not good at accurately diagnosing the Gleason or staging of prostate cancer. What probably is a relatively risk-free strategy is to take AS if offered for a few months and see how your PSA is changing at the next 3-monthly PSA test, although an issue in your case is that the cancer isn't really showing up in your current PSA, which also casts a question over how effective PSA monitoring in the long term might be in your case. Giving it 3 months will also give you time to get over the initial diagnosis and rationalise things, which to be fair, is going to be difficult to do just 2 days after being told.

Much of this is dependent on your attitude to risk and confidence in the diagnosis, and hence varies from one person to another even in the case of an identical diagnosis.

You could perhaps use your BUPA cover to get a second opinion, although you can do that on the NHS too.

Edited by member 08 Mar 2025 at 23:20  | Reason: Not specified

User
Posted 09 Mar 2025 at 16:17

Many thanks for the reply.  Good to know I can request other treatment if I feel it's needed, indeed still very early days.  The consultant was indicating my PC was found extremely early before the gleason 6 cancer has started to raise my psa levels.  This was due to my initial treatment being done by Bupa as part of a health assessment and Bupa doing a DRE and MRI and not just relying on the psa as the indicator (due to my father dying from PC at 86 years last year). My Bupa consultant transferred me to her NHS clinic for biopsy and follow up. If this is the case then clearly more people having earlier MRI's could save more lives.

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User
Posted 08 Mar 2025 at 19:07
Sorry can’t help but bumping you back up the page . Can be quiet at the weekend.

Best wishes

Debby

User
Posted 08 Mar 2025 at 21:10

Hi, I’ve been on A/S for nearly 8 years, I was diagnosed when I was 50 with 3 + 3, PSA 6.8, my diagnosis has recently changed, recent MRI has shown pirads 4 and last biopsy was 3 + 4, I’m now having surgery next month to remove my prostate, I was happy to be on A/S, I had a MRI every year, PSA every 3 to 6 months and a Trus biopsy, template biopsy and a perineal biopsy in that time. 

User
Posted 08 Mar 2025 at 23:17

Anyone on AS can change to active treatment at any time on the NHS, even if the cancer hasn't changed. Your consultant was wrong to say AS was the only way forward, but could be correct that any treatment would be over treatment in your case.

AS is not a risk-free strategy, because we are not good at accurately diagnosing the Gleason or staging of prostate cancer. What probably is a relatively risk-free strategy is to take AS if offered for a few months and see how your PSA is changing at the next 3-monthly PSA test, although an issue in your case is that the cancer isn't really showing up in your current PSA, which also casts a question over how effective PSA monitoring in the long term might be in your case. Giving it 3 months will also give you time to get over the initial diagnosis and rationalise things, which to be fair, is going to be difficult to do just 2 days after being told.

Much of this is dependent on your attitude to risk and confidence in the diagnosis, and hence varies from one person to another even in the case of an identical diagnosis.

You could perhaps use your BUPA cover to get a second opinion, although you can do that on the NHS too.

Edited by member 08 Mar 2025 at 23:20  | Reason: Not specified

User
Posted 09 Mar 2025 at 16:17

Many thanks for the reply.  Good to know I can request other treatment if I feel it's needed, indeed still very early days.  The consultant was indicating my PC was found extremely early before the gleason 6 cancer has started to raise my psa levels.  This was due to my initial treatment being done by Bupa as part of a health assessment and Bupa doing a DRE and MRI and not just relying on the psa as the indicator (due to my father dying from PC at 86 years last year). My Bupa consultant transferred me to her NHS clinic for biopsy and follow up. If this is the case then clearly more people having earlier MRI's could save more lives.

User
Posted 10 Mar 2025 at 09:27

I'm Gleason 3+4 T2b and was recommended AS but after much deliberation have decided on RARP. I think if I was Gleason 6 I'd have stayed on AS but made absolutely sure the monitoring was accurate and timely including having additional MRI's at my own cost if necessary. A lot has to do with ones state of mind, some men are OK to live with cancer whilst on AS, some aren't. Good luck

 
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