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Treatment options......

User
Posted 19 Aug 2025 at 16:45

Hi

I am new to this & really appreciate the discussion on treatment.

I recently had a Cancer score 3 + 4 which is moderately low in comparison. I am nearly 62 years of age.

I am having a follow up discussion on my options & I'm scared. I was informed about Radiotherapy (SABR) & having to wear a 'bag' for a short while. It seems like a good option but I've never felt so scared.

I am reading your experiences & looking for some comfort, if that's possible.

 

Kind regards

 

User
Posted 19 Aug 2025 at 19:19

Hi Nick another Nick here , these’re a few of us on here recently unfortunately 

I was diagnosed out of the blue in March mate 56 years old and also 3+4 ,  it takes some taking in , I looked in depth at AS, SABR , focal therapy and full Surgery and eventually decided on the full surgery which is on Friday 

treatment options was the first question I asked and is most likely the most common question on here , don’t think there is any right or wrong answer as everyone is different , in my case I spoke to 3 different surgeons, 2 Oncolagists and a focal therapy consultant just to get as much info as I could , I also looked at the many threads on here especially in the localised cancer section which helped 

good luck mate 

Nick

User
Posted 20 Aug 2025 at 10:07

Thanks Nick.

Hope all goes well on Friday.👍

User
Posted 28 Sep 2025 at 23:48

Yes, my urologist says PSA every 6 months and MRI once a year, then you compare MRIs each year with no need for another biopsy unless things change drastically. I still have blood in my semen after 6 weeks, can do without that again. 

User
Posted 29 Sep 2025 at 10:58

For me you are both right, Adrian and Nick. The science and public articles persuaded me that there was an alternative for 3+4 which was AS but it is a friend who made me dead sure. As I said above somewhere, he had the same 3+4 and the same  first surgeon as me who wanted an immediate prostatectomy but he went to the second who advised AS; that was 7 years ago and he is still on AS with no change - regular PSA and once a year MRI. 
Then, it has to be a personal choice, remove the ‘alien’ from the body or compromise living a normal life with it for as long as possible. 

User
Posted 29 Sep 2025 at 11:16
It is more often the case that men diagnosed with cancer want it removed or alternatively treated. Probably, the main reason for this is that they don't like the idea of cancer growing in them. It follows that some of these men would have died without cancer ever becoming a problem or in some cases for a very long time.had they not been treated. This is recognised as happening and is called 'over-treatment'. Unfortunately, with current technology, it is not possible to be certain whether it is safe to defer treatment or play more safe and undergo early treatment. Men have to take an individual view on this, taking into account as much information as possible on their individual cases. Generally, men are offered treatment because refusing a man treatment where a man subsequently developed spread would lay the Consultant open to criticism. It is of course, very important that men who opt for AS are regularly monitored to reduce the risk of bing treated when the cancer has developed to the point where it has become more difficult to treat.
Barry
User
Posted 30 Sep 2025 at 19:35

Adrian the error message is frustrating and off putting. I am a wife but there are men on this forum who are wanting advice, support  and information and I can only imagine that they are deterred by the constant error message.

In terms of AS I think for those men with Gleason grade 3:4 it often comes down to whether someone can live with a degree of uncertainty in terms of whether their diagnosis on the basis of their MPMRI and biopsy is accurate and whether that risk outweighs the benefits of avoiding or delaying the side effects of radical treatment.

I also agree that this forum  probably highlights  men who have poorer outcomes after opting for AS. I am sure there are many men who are happy with their choice who do not access these forums. I do however believe an informed approach is best and that includes acknowledging that your diagnosis following MPMRI and biopsy may have significantly under diagnosed the extent of disease.

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User
Posted 19 Aug 2025 at 18:08

Hi Nick,

I'm sorry that you've had to join our Club, but welcome to the forum, mate.

Here's an excellent video on all treatment options and their possible side effects.

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

Whatever you chose, you'll gets lots of help and support here.

Good luck.👍

User
Posted 19 Aug 2025 at 19:19

Hi Nick another Nick here , these’re a few of us on here recently unfortunately 

I was diagnosed out of the blue in March mate 56 years old and also 3+4 ,  it takes some taking in , I looked in depth at AS, SABR , focal therapy and full Surgery and eventually decided on the full surgery which is on Friday 

treatment options was the first question I asked and is most likely the most common question on here , don’t think there is any right or wrong answer as everyone is different , in my case I spoke to 3 different surgeons, 2 Oncolagists and a focal therapy consultant just to get as much info as I could , I also looked at the many threads on here especially in the localised cancer section which helped 

good luck mate 

Nick

User
Posted 20 Aug 2025 at 10:07

Thanks Nick.

Hope all goes well on Friday.👍

User
Posted 20 Aug 2025 at 10:14

Hi Adrian.

Thank you so much for the video link.

I wasn't made aware of LDR Brachytherapy, maybe not available to me as it shows treatment only at Bartholomew's Hospital. 

Take care 👍

 

User
Posted 12 Sep 2025 at 16:02

Nick, I am sorry I have come to this so late and maybe I am still in time to give you a contrary view. 
I have Gleason 3+4=7 too and the surgeon who did my biopsy advised removing my prostate or, second choice , radiotherapy. 
I refused. A friend had the same 3+4, the same surgeon, the same advice and refused too. He was 50 and went to another surgeon who suggested and strongly supported AS,  Active Surveillance, PSA twice a year and MRI once a year and this is now 7 years on with no change to his status and no treatment! Still continent, still erections etc!!

I have gone to the same second surgeon, top urologist and well known researcher etc who advised me to do the same thing, AS. 
I am 68 , so normal life for as long as possible and if signs of growing cancer emerge, then surgeon says we can zap one bit or more etc! He says I have a good chance of dying with this cancer rather than because of it. 
I hope this helps? R

User
Posted 12 Sep 2025 at 19:13

Hi R.

Thank you so much. Your reply has given me comfort. 

I have my meet about my options in a couple of weeks & am scared & anxious.

I will be filled with dread if I'm offered removal. Fingers crossed that A S is on the table without me having to choose it.

Thank you again so much.

User
Posted 12 Sep 2025 at 20:53

Of course you’re scared, as I was and Adrian with his video and the other boys really helped but don’t be bullied by any doctor. Our 3+4=7 is exactly what has been in the press about the new thing is not to operate but to do AS. Higher than that they are not sure but for ours many doctors now recommend AS. So if you are told have it removed or radio etc, tell them you want to think about it and get a second opinion. Privately you can see top people for a one off £300, expensive in one sense but cheap when we are talking about our lives. You can see someone else without upsetting the first person - if it’s private for example, you book yourself etc. No one knows. 
Nick, I’ve had a quadruple heart bypass, refused the first surgeon who wanted to do a very invasive operation and researched myself and chose a surgeon specialising in keyhole surgery; I am the first person to have a quadruple heart bypass through keyhole surgery - now I have f… cancer and macular degeneration!!-  because I found the surgeon suitable for me. 
Adrian’s video opened my eyes, thank you so much to him and made me determined to find someone who read my notes, looked at my biopsy results and said yes, we should do AS. If bad luck hits again, I might have to be zapped here or there he said but normally he says it might grow so slowly if at all ( as we get older the cells grow much more slowly) that I should die with it. This is the latest way of thinking by some surgeons for 3+4. 
For this sort of thing, as the other Nick above says, a second opinion is of paramount importance. If you live in or near London, lots of choices. If I can help please let me know, I owe this forum and happy to pass on my bit!

User
Posted 12 Sep 2025 at 20:55

I hope you are recovering well. R

User
Posted 13 Sep 2025 at 11:56

Thank you again.

I will push back if offered removal. AS will hopefully be offered!!!!!

As a possible option from Adrian's video, I did like the option for LDR Brachytherapy. I am aware that this is London based. 

Take care & big thanks

 

 

User
Posted 13 Sep 2025 at 12:05

Good luck! R

User
Posted 14 Sep 2025 at 17:08

Sorry to hear you are going though the same journey as it’s mind blowing initially.

It maybe prudent getting a second opinion from the top specialist > UCLH or London Bridge (Guys). Connecting with a high volume well respected robotic surgeon specialist is worth investigating maybe while you are relatively young and will potentially have prospects of good outcome while thought to be localised. 

Things to bear in mind is that Prostate cancer is usually a multifocal disease which  tends to appear in the anterior area of the prostate. Unfortunately this can mean  breaking out sooner than one would hope as was very much my case.

While scanning tech is coming on leaps and bounds it doesn’t always tell the whole picture plus biopsy can miss small amounts of potentially higher grade cells. Both factors were very much at play in my case and post RARP histology upgraded me to 3+4 T2C. (From 3+3) which was close to breaking out and becoming T3. In my case I’m so pleased I ignored the local team and MDT regarding AS and got a second opinion with a top London prof surgeon.

I’m now nearly 6yrs post op …fully continent, no significant ED issues and PSA undetectable thus far.

 

 

 

 

User
Posted 14 Sep 2025 at 18:17

Definitely worth getting a few different opinions , I would also (if you don’t already know ) be asking size of tumour and where it is positioned , what is the percentage of the pattern 4 

one thing I found that also seems to be overlooked is the quality of the scan , as I mention earlier in the thread I was also 3+4 and was told that active surveillance was an option for me but I was also being told that my MRI scan could have been clearer 

I paid for another MRI, this time a MPMRI with contrast on a more advanced scanner , the results from that showed tumour was larger than previously advised although it could have grown and was closer to the edge, my decision for surgery was made after that and I’m glad I did as after surgery pathology showed that tumour was in fact much larger than both scans had shown, was indeed very close to the edge , it also showed the true percentage of pattern 4 , I was originally told this was less than 10% where infact  it was nearer to 30% so the more aggressive buggers were 3 times higher than originally thought

im now over 3 weeks post op and all is going well , absolutely no regrets and it’s nice to wake up knowing it’s gone ( although still got PSA test in 5 weeks ) 

We are all different in regards to what our favoured treatment options are and it may be that AS is a good option for you but as above get as much information as you can before making a decision 

All the best

Nick

 

 

User
Posted 27 Sep 2025 at 12:37

Hi

Just an update on my discussed action going forward for now.

My Doctor recommended Active surveillance & wasn't pushing treatments for now.

I was relieved that he said this, rather than me pushing for it.

Thank you all again for your words of comfort. 

Hope you are doing well

Nick.K

 

User
Posted 28 Sep 2025 at 18:54

Good for you Nick and may all your forthcoming tests show no change! AS for our grade of cancer is becoming the norm. Good luck. 

User
Posted 28 Sep 2025 at 23:23

Good luck with it mate , just ensure they do regular PSA checks and if it was me I would be wanting MPMRI at least once a year 

User
Posted 28 Sep 2025 at 23:41

Hiya mate , I was also 3+4 but when you say that grade of cancer is becoming the norm for AS is that what you mean as in all 3+4 ?

from what I was told 3+4 is only part of the diagnosis and it all depends on where the tumour is located in the prostate, how large the tumour is, what is percentage of pattern 4 etc 


I only mention this as I would have opted for AS if I could have been 100% confident in it but different specialists gave conflicting advice , some said it was a good option but after Prostatectomy it showed the tumour was much larger than both scans had showed and was closer to breaking out than  all specialists had previously advised, I think it is also the case that in around 40% of cases post prostatectomy shows a  different Gleason score to what was previously advised 

I only mention this incase you have not been advised this by your specialist but either way wish you well with your decision

all the best

Nick

 

 

 

User
Posted 28 Sep 2025 at 23:48

Yes, my urologist says PSA every 6 months and MRI once a year, then you compare MRIs each year with no need for another biopsy unless things change drastically. I still have blood in my semen after 6 weeks, can do without that again. 

User
Posted 28 Sep 2025 at 23:57

Thank you Nick, you are right, it depends where it is etc. For example mine is on both sides of the prostate which means that HIFU is not suitable for me according to surgeon one who wanted an immediate removal of the prostate. Surgeon two showed me the scans and explained that my ‘dots’ were small and he recommended to do AS. Which is my wish. He is also a well known researcher and he said his method if the next MRI showed one ‘dot’ growing is to ‘zap’ just that one, leaving the rest. 
I didn’t like the first man for various reasons but feel confident with the second so I followed him and his advice. 

User
Posted 29 Sep 2025 at 00:29

Really wish you well with it mate but please for your own benefit keep an eye on it , I personally don’t have any faith in there AS methods but that’s just me , it didn’t help when my first scan showed tumour to be 6 mm , second scan showed tumour to be 8 mm , real life size of tumour after prostatectomy was 20 mm , they also said percentage of pattern 4 was less than 10% , real percentage was nearer 30% , I mean that’s really significant considering the pattern 4 is so much more aggressive than pattern 3 

All the best mate 

 

User
Posted 29 Sep 2025 at 01:34

Originally Posted by: Online Community Member
im now over 3 weeks post op and all is going well , absolutely no regrets and it’s nice to wake up knowing it’s gone ( although still got PSA test in 5 weeks )

Hi Niko 

I don't want to pee on your bonfire, mate, but no one knows it's gone. Over 30% of those who've had radical treatment get recurrence. Which is about the same failure rate of those on active surveillance. Of course, I hope that you're in the majority and that your treatment is a complete success. 👍

Obviously after any radical treatment, you've still got to be monitored. Unfortunately, like many others on here, I've found PSA checks to check for recurrence are far more stressful than they were for disease progression on active surveillance.

You mentioned  40% of Gleason scores being regraded after surgery. It's 25% being upgraded and 15% being downgraded. There always appears to a disportionately higher percentage of low grade Gleason 6 (3+3) upgraded because it cannot be  downgraded. There is no Gleason 5.

Of course there will be individual stories of AS failure and the risks involved, just like they'll be stories of all radical treatments risks and failures. There are no guarantees in any treatment.

I never focused too much on individual's experiences but looked more at the bigger picture. Looking at the biggest sample you can find of a specific treatment option and acting on that is best because bigger samples give a more accurate success/failure rate.

In my opinion, the biggest risk of AS is basing it on an inaccurate MRI scan or biopsy. However, as these procedures continue to improve that risk is reducing. It is also imperative that your AS is active and that you have follow up PSA checks and MRIs etc.

The beauty of AS is there are no risks of the likely side effects of radical treatments, and if the cancer develops or the treatment doesn't suit you, you can chose an other option.

Edited by member 29 Sep 2025 at 02:15  | Reason: Typo

User
Posted 29 Sep 2025 at 08:59

Everyone has there own reasons for there preferred treatment options mate and certainly not peed on my bonfire as I wouldn’t change a thing and stand by what I said 👍

If what your saying is right that 25% is upgraded ( and I have no reason to think that it isn’t right ) considering 3+3 is the main one where AS is the preferred option i wouldn’t be happy that there was a 25% chance that my gradings could be more severe than initial diagnosis 

we will also have to agree to disagree on the MRIs and biopsy’s improving as despite me having 2 MRIs one of which was a MPMRI performed on a 3.0 machine which is double the tech of the standard scanner neither showed the true size of the tumour , nowhere near, the biopsy also advised  a third less percentage of pattern 4 than what was actually there so for me and my own actual experience It certainly isn’t a great endorsement for AS which I was offered 

I personally prefer to listen to real life scenarios so Can’t really comment on overall statistics  as I haven’t looked at them in detail although My surgeon did advise that unsuccessful surgery is more likely if the cancer isn’t contained and has broken out 

I know 2 friends who have had prostate cancer 3 if you include me and all of us have seen worse upgraded  diagnosis after prostatectomy 

as you say PSA result time will be worrying but for me not a patch on how I was before when it was the first thing on my mind from waking up and last thing at night 

everyone’s different and I imagine most will stand by there treatment decisions , I certainly wish all the best for Anyone going down the AS route and agree it obviously works for a lot of people who’s cancer has been diagnosed correctly in the first place and hasn’t changed , as you and I both agreed on key is to ensure PSA and MRIs are kept up to date , given my own first hand experience though and seeing the actual true result I’m glad it wasn’t an option I took 

 

 

User
Posted 29 Sep 2025 at 10:58

For me you are both right, Adrian and Nick. The science and public articles persuaded me that there was an alternative for 3+4 which was AS but it is a friend who made me dead sure. As I said above somewhere, he had the same 3+4 and the same  first surgeon as me who wanted an immediate prostatectomy but he went to the second who advised AS; that was 7 years ago and he is still on AS with no change - regular PSA and once a year MRI. 
Then, it has to be a personal choice, remove the ‘alien’ from the body or compromise living a normal life with it for as long as possible. 

User
Posted 29 Sep 2025 at 11:01

Hi Niko.

By saying, "I don't want to pee on your bonfire" I wasn't critising anything in your post. It was directed at your optimism of after surgery,  waking up 'knowing it had gone'  RARP isn't a certain cure. A lot of men think it is, but about 30% still get BCR.

As you say, people make their own decisions on treatments. Personally, I'd rather base mine on the scientific data of huge samples of patients, rather than individuals on here who dismiss treatments because they didn't work from them.

In fact, if anyone should be critical of active surveillance, it should be me. I went on it when I was diagnosed with PSA 5.5, Gleason 6 (3+3), T2a, (safely prostate confined). Only 20 months later, my PSA was still only 7, but my Gleason score was 9 (4+5) and the cancer had breached the prostate capsule, T3a. It left me in quite a precarious situation.

However, knowing what I now know about the disease, I realise that my AS failure was caused by an inaccurate intial biopsy, which missed the aggressive cancerous cells, and very poor follow up monitoring. It was during Covid restrictions and during the ensuing chaos,  my follow up MRI scan was delayed by 14 months.

Despite my own personal AS 'horror story,'  I wouldn't tell others not to try it.  Statistics clearly show that generally it is a safe and successful treatment option.

Our own site says

Active surveillance has been shown to have the same 15-year survival benefits compared to both surgery and radiotherapy for men with low risk localised prostate cancer. Actively monitoring these cancers instead of treating them immediately, may give men the option to delay or avoid the potential side effects associated with surgery and radiotherapy. 

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

Active surveillance is increasingly becoming the gold standard treatment for men with low grade prostate confined cancer.

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

 

Edited by member 29 Sep 2025 at 11:04  | Reason: Add links.

User
Posted 29 Sep 2025 at 11:16
It is more often the case that men diagnosed with cancer want it removed or alternatively treated. Probably, the main reason for this is that they don't like the idea of cancer growing in them. It follows that some of these men would have died without cancer ever becoming a problem or in some cases for a very long time.had they not been treated. This is recognised as happening and is called 'over-treatment'. Unfortunately, with current technology, it is not possible to be certain whether it is safe to defer treatment or play more safe and undergo early treatment. Men have to take an individual view on this, taking into account as much information as possible on their individual cases. Generally, men are offered treatment because refusing a man treatment where a man subsequently developed spread would lay the Consultant open to criticism. It is of course, very important that men who opt for AS are regularly monitored to reduce the risk of bing treated when the cancer has developed to the point where it has become more difficult to treat.
Barry
User
Posted 29 Sep 2025 at 11:32

Thank you Adrian, really useful. I had the MRI guided biopsy which hopefully is the most accurate where the surgeon overlaid the MRI scan over the space between my testicles and my anus( trying to be technical here!) so that his 24 needles where inserted exactly where the cancer ‘dots’ where for very accurate sample taking. He also took samples of healthy areas. 
I wonder if for those where the biopsy let them down they had the MRI guided operation? 

User
Posted 29 Sep 2025 at 11:56

Hi Adrian

is your 30% failure rate an overall figure , I ask as according to data from ChatGBT Prostatectomy on lower grade cancers , 3+3, 3+4 has excellent outcomes  with high chances of being cured , higher scores make reaccourance more likely due to risk of microscopic spread outside the gland 

T stage Obviously also is a factor,  apparently T2 stage has >90% success rate over 10-15 years 

From what I have seen  is if your 3+3 , T2 then prostatectomy survival rate over 10-15 years  is excellent as is AS but 30-50% of men on AS will need treatment within 10-15 years , as you say at least it gives 10-15 years of not having surgery or other treatments 

3+4 T2 is not as favourable for AS and 50-70% need treatment within 10 years 

given what I have read I am guessing that the majority of of your 30% failure rate is linked to higher grade cancers which to be fair I am not including as if my diagnosis had been higher grade then I would more than likely looked at RT/ SABR as a treatment option

i still stand by the fact that MRIs and biopsies are not always showing the true picture as in my case and many others but I say again that people can make there own decisions and those will vary , I really wish anyone who follows the AS route all the very best and as you say it is obviously working for a lot of people , unfortunately for me I just don’t have the faith in the diagnosis accuracy 

 

User
Posted 30 Sep 2025 at 08:29

I agree that MPMRI and biopsy can miss the true extent of disease. My husband was correctly diagnosed with a lesion that following biopsy was graded as 3:4 20% grade 4. T2A. After surgery this lesion was measures as .91 3:4 with 25% pattern 4. However following surgery three further tumours were found. Admittedly they were small. One was .22cc and 3:4 with 5% grade 4 one was .09cc and was 3:3 but more importantly another small tumour. .14cc 4:3 with 65% grade 4 was missed. 
AS was never recommended but it seems increasingly this is the case for 3:4 tumours. It of course is a personal choice but I think it wise to be aware that the grading, size etc could be under represented.

User
Posted 30 Sep 2025 at 08:56

From all your experiences it seems that the grading/ biopsies can be inaccurate and is a risk for those of us following AS. I wonder whether different kinds of MRI and biopsies are more accurate than others. In any case, for us with AS, twice yearly PSA and once yearly MRI are essential to pick up any changes; any missed lesions could grow and thus be detected. 

User
Posted 30 Sep 2025 at 10:03

Originally Posted by: Online Community Member

I agree that MPMRI and biopsy can miss the true extent of disease.

In my opinion, for this day and age, biopsies are woefully inaccurate.

Here's an extract from a research paper on biopies, highlighting their infallibilites:

The researchers also determined that combined biopsy provided more accurate diagnosis than MRI-targeted biopsies alone. Among the men who underwent prostatectomy, the researchers found that systematic biopsy alone underdiagnosed about 40% and MRI-targeted biopsy alone underdiagnosed about 30% of the cancers, while combined biopsy underdiagnosed 14.4% of the cancers. In addition, while systematic biopsy underdiagnosed 16.8% and MRI-targeted biopsy underdiagnosed 8.7% of the most aggressive cancers, combined biopsy missed only 3.5% of the most aggressive cancer cells

https://www.cancer.gov/news-events/press-releases/2020/combined-prostate-biopsy

We all know how crucial biopsies are to formulating treatment plans. It's a shame that our options are based on a bed of uncertainty. They are particulary important when opting for active surveillance. However,  I don't think their unreliability should overly deter men from AS.

I've said many times before, that I don't think AS gets fair press on this forum. Recently I posted this conversation on how it is becoming a safer option. I thought it was good, uplifting news. No-one responded. 

https://community.prostatecanceruk.org/posts/t31897-Has-active-surveillance-become-a-safer-treatment-option

PS:

IDK2. It's great to see you again. I was beginning to think, that like many others, the 502 error had got to you. 🙂

 

Edited by member 30 Sep 2025 at 11:25  | Reason: Additional text

User
Posted 30 Sep 2025 at 14:48

@IDK2 It’s actually frightening that so much was missed, I remember the one surgeon telling me that I was suitable for AS but in the next breath was telling me that in around 40% of cases the grading has turned out to be wrong , I was literally gobsmacked at that and asked then how can they recommend AS if there is a 40% chance the diagnosis isn’t accurate , He couldn’t answer the question which said it all, to me 

Edited by member 30 Sep 2025 at 14:49  | Reason: Not specified

User
Posted 30 Sep 2025 at 19:35

Adrian the error message is frustrating and off putting. I am a wife but there are men on this forum who are wanting advice, support  and information and I can only imagine that they are deterred by the constant error message.

In terms of AS I think for those men with Gleason grade 3:4 it often comes down to whether someone can live with a degree of uncertainty in terms of whether their diagnosis on the basis of their MPMRI and biopsy is accurate and whether that risk outweighs the benefits of avoiding or delaying the side effects of radical treatment.

I also agree that this forum  probably highlights  men who have poorer outcomes after opting for AS. I am sure there are many men who are happy with their choice who do not access these forums. I do however believe an informed approach is best and that includes acknowledging that your diagnosis following MPMRI and biopsy may have significantly under diagnosed the extent of disease.

User
Posted 01 Oct 2025 at 00:51

Thank you Adrian, I joined after that but very useful. 

 
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