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Has anyone been on AS for several years?

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 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 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

User
Posted 23 Mar 2025 at 07:03
I was diagnosed Gleason 3+3 in 2014 at age 58 with a PSA of 7. My consultant recommended AS and I went on that. In late 2021 an MRI showed an area a bit different and biopsy moved my Gleason to 3+4, at that stage my PSA was 14. I took my consultant's advice and had a radical prostatectomy in March 2022 (age 66). Good recovery and three years since the operation my PSA is very low and I'm very happy with how this has been treated (on the NHS).
User
Posted 23 Mar 2025 at 07:34

There won't be many, if any, blokes on here who've been on AS for years and needed no further treatment. They will have no need to be on a forum which is heavily biased towards problematic treatment and poor outcomes.

https://www.healthline.com/health-news/surveillance-is-an-effective-way-to-manage-some-types-of-prostate-cancer-new-study-finds#Half-of-patients-using-surveillance-did-not-have-cancer-progression

The Canary Pass trial shows the effectiveness of the active surveillance protocol in the real world.

The study was conducted with more than 2,300 patients across 10 treatment centers in North America. Patients were recruited between 2008 and 2022, with an average follow-up period of 7 years. The majority were white (83%), while a small proportion were Black (7%).

Researchers found that using the protocol effectively managed the cancer and reduced overtreatment.

Ten years after an initial diagnosis, nearly half (49%) of all participants did not experience cancer progression, nor did they receive treatment. Within the entire cohort, less than 2% developed metastatic cancer. Less than 1% of patients died from the disease.

Edited by member 23 Mar 2025 at 08:07  | Reason: Additional text

User
Posted 04 Apr 2025 at 07:52

Hi, thanks for the reply, I am 57 (58 this year), so in a similar position.  I did struggle for a couple of weeks with the thought of AS, but I have come to terms with it now and will stay with it unless things change.  I am gleason 6 but without an elevated PSA (1.47 in December), which I'm told means they found it early so 3 monthly PSA checks will be critical as will annual/18 month MRI's.  I too started D3 at Christmas when the suspicion of PC was first mentioned, and have took probiotics and Korean Ginseng for years (which there is some evidence may help), and also introduced a cup of green tea and ginger and turmeric tea into my diet.  I do still need to lose a bit more weight as proabably 3 stone or so over weight but I do have a mini gym in my garage so no excuse not to go to the gym...

User
Posted 18 Apr 2025 at 08:53

Unfortunately BUPA pulled the cork out of your bottle and it won't go back in.

You know that something is going on and need to work on yourself to manage the knowledge of having PC

I was diagnosed 8 years ago and was on Active surveillance until Jan2025 I was more than ok with my normal

My PSA at RALP was 21 ish and grade G7

Pathology after surgery showed only G6

PSA now undetectable

BUT!!! I am now fully incontinent and no erectile function

On AS I was fully active with no SE

Learn as much as you can

Go on You tube and follow some of the worlds best cancer specialists

Improve your knowledge and keep your fingers crossed 

Either way the knowing you have PC is part of your life (althogh G 6 is regarded by many as "abnormal cells")

Work on your self and enjoy

AS means you stay physically as your are, at least in the short term and possibly long term

All active treatments have side effects many of them severe

AS has risk of progression but it could take many years 

There is a very good PC AS facebook group

Your PC is very low and very early ultimately the choice is yours

Enjoy today

Be in the moment 

Edited by member 18 Apr 2025 at 08:56  | Reason: Not specified

Show Most Thanked Posts
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

User
Posted 23 Mar 2025 at 07:03
I was diagnosed Gleason 3+3 in 2014 at age 58 with a PSA of 7. My consultant recommended AS and I went on that. In late 2021 an MRI showed an area a bit different and biopsy moved my Gleason to 3+4, at that stage my PSA was 14. I took my consultant's advice and had a radical prostatectomy in March 2022 (age 66). Good recovery and three years since the operation my PSA is very low and I'm very happy with how this has been treated (on the NHS).
User
Posted 23 Mar 2025 at 07:34

There won't be many, if any, blokes on here who've been on AS for years and needed no further treatment. They will have no need to be on a forum which is heavily biased towards problematic treatment and poor outcomes.

https://www.healthline.com/health-news/surveillance-is-an-effective-way-to-manage-some-types-of-prostate-cancer-new-study-finds#Half-of-patients-using-surveillance-did-not-have-cancer-progression

The Canary Pass trial shows the effectiveness of the active surveillance protocol in the real world.

The study was conducted with more than 2,300 patients across 10 treatment centers in North America. Patients were recruited between 2008 and 2022, with an average follow-up period of 7 years. The majority were white (83%), while a small proportion were Black (7%).

Researchers found that using the protocol effectively managed the cancer and reduced overtreatment.

Ten years after an initial diagnosis, nearly half (49%) of all participants did not experience cancer progression, nor did they receive treatment. Within the entire cohort, less than 2% developed metastatic cancer. Less than 1% of patients died from the disease.

Edited by member 23 Mar 2025 at 08:07  | Reason: Additional text

User
Posted 23 Mar 2025 at 08:51

Thanks a lot for the info Adrian.  I've  been doing quite a lot of research in the 2 weeks since diagnosis and it seems it's very rare for a lesion that has had a targeted biopsy from MRI (as in my case) and is given gleason 6, to change to a higher number, this is more likely to happen from random biopsies where more aggressive cells are missed, but what can happen is additional lesions can form which may not be gleason 6, which is why the regular checks on AS are so critical.

User
Posted 23 Mar 2025 at 10:03

Originally Posted by: Online Community Member
AS is not a risk-free strategy, because we are not good at accurately diagnosing the Gleason or staging of prostate cancer.

As Andy says AS is not risk free. However,  neither is any radical treatment. There is significant risk of recurrence with either surgery or radiotherapy. On top of this with radical treatments, there is also a high risk of side effects.

If you read my bio, you will see my AS was a miserable failure. My first targeted biopsy showed Gleason 6 (3+3) and T2a. Twenty months later, I was Gleason 8, later upgraded to 9 (4+5) and capsular breach, T3a.

I believe that my first biopsy although targeted, still missed the more aggressive cancer cells. To me, the biggest risk of AS failure, is the possibility of an inaccurate first biopsy. The problem is you'll never eliminate this risk. My 'disease progression' was also not helped by the fact that a 6 month follow up MRI which had been recommended, was 'missed' and given 14 months late.

My AS failure left me in a potentially dangerous position. However, I believe that I was an exception, and that AS is still a good treatment option to those with low grade, low volume, safely contained PCa.

PaulOct2021's AS ultimately 'failed', but at least it guaranteed him 8 years free of possible side effects of radical treatment.

Edited by member 23 Mar 2025 at 10:19  | Reason: Additional text

User
Posted 28 Mar 2025 at 11:51

"Ten years after an initial diagnosis, nearly half (49%) of all participants did not experience cancer progression, nor did they receive treatment. Within the entire cohort, less than 2% developed metastatic cancer. Less than 1% of patients died from the disease."

Thats still 1 in 50 men where it fails, fine if you can live with that and certainly the benefits of not having treatment are many and many are happy with AS but would you bet your life on it?

 

 

User
Posted 28 Mar 2025 at 18:04

Like you, I'm recently diagnosed: PIRADS 4 with Gleason 6 (3+3), 4 cores +ve out of 15, T1 and T2a. Last PSA at biopsy was 6.8.

After the initial 1) shock at it being cancer 2) relief it wasn't higher grade and more immediately dangerous, I read up loads of research and data on PCa, and concluded I'm 'temporarily' happy with choosing AS.

But I'm making sure I'm very Active with diary dates for further PSA and MRI checks, plus upping the overall health with diet & exercise (interesting study recently showed significant suppression of PSA rise with gut microbe, vit D3 and particular whole plant supplements).

That will either help the AS status quo, or at least makes my body more resilient for any future ops and treatment if needed.

It's a difficult choice and you may decide differently. Peace of mind is a very personal thing.

I'm 58 btw, got my BMI down to the OK zone last year and now cycling over 60 miles a week, with longer multi days of over 240 miles planned soon plus even taking up yoga! Funny too how such an event effected me from being a workaholic to now contemplating earlier retirement.

User
Posted 04 Apr 2025 at 07:52

Hi, thanks for the reply, I am 57 (58 this year), so in a similar position.  I did struggle for a couple of weeks with the thought of AS, but I have come to terms with it now and will stay with it unless things change.  I am gleason 6 but without an elevated PSA (1.47 in December), which I'm told means they found it early so 3 monthly PSA checks will be critical as will annual/18 month MRI's.  I too started D3 at Christmas when the suspicion of PC was first mentioned, and have took probiotics and Korean Ginseng for years (which there is some evidence may help), and also introduced a cup of green tea and ginger and turmeric tea into my diet.  I do still need to lose a bit more weight as proabably 3 stone or so over weight but I do have a mini gym in my garage so no excuse not to go to the gym...

User
Posted 04 Apr 2025 at 09:01

Originally Posted by: Online Community Member
  I do still need to lose a bit more weight as proabably 3 stone or so over weight but I do have a mini gym in my garage so no excuse not to go to the gym...

I could do with losing a few pounds. I've got a Carl Lewis rowing machine and treadmill in the garage. Which were last used by me, a few years after the great man retired, in the late 1990's. However, the exercise machines are still useful.  They can both comfortably  seat a 18 can pack of Stella. 😁

User
Posted 04 Apr 2025 at 09:44

Hello friends, in my case, I've been in AS since October 2023. Gleason score 6 pirads4, size 10x11 mm, apical area.
Follow-up MRI December 2025. Stable lesion with no significant changes and the rest of the prostate is clean.
My PSA history
May 2022 -- PSA 4.14
Oct 2023 -- PSA 5.33 (at diagnosis)
Jun 2024 -- PSA 5.85
Sept 2024 -- PSA 35.80 (Prostatitis)
Nov 2024 -- PSA 11.70 (Prostatitis)
Jan 2025 -- PSA 5.59
Mar 2025 -- PSA 4.80

B.R.

User
Posted 18 Apr 2025 at 08:53

Unfortunately BUPA pulled the cork out of your bottle and it won't go back in.

You know that something is going on and need to work on yourself to manage the knowledge of having PC

I was diagnosed 8 years ago and was on Active surveillance until Jan2025 I was more than ok with my normal

My PSA at RALP was 21 ish and grade G7

Pathology after surgery showed only G6

PSA now undetectable

BUT!!! I am now fully incontinent and no erectile function

On AS I was fully active with no SE

Learn as much as you can

Go on You tube and follow some of the worlds best cancer specialists

Improve your knowledge and keep your fingers crossed 

Either way the knowing you have PC is part of your life (althogh G 6 is regarded by many as "abnormal cells")

Work on your self and enjoy

AS means you stay physically as your are, at least in the short term and possibly long term

All active treatments have side effects many of them severe

AS has risk of progression but it could take many years 

There is a very good PC AS facebook group

Your PC is very low and very early ultimately the choice is yours

Enjoy today

Be in the moment 

Edited by member 18 Apr 2025 at 08:56  | Reason: Not specified

 
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