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Hello from a difficult patient in London

Posted by Paul Sweeney @paulsweeney, 1 day ago

Hi all,

Been lurking for a while, thought it was time to introduce myself.
Diagnosed in 2022 with Gleason 3+4. Radical prostatectomy recommended - within 6 weeks.

I asked questions. A lot of questions — and the more I dug into the research, the less convinced I became that rushing to treatment was the right call for me.

I chose active surveillance. Changed my diet significantly, started a structured exercise regime, and spent hundreds of hours reading the published evidence on what actually moves the needle for men in my position.

Four years on, no progression. Still on Active Surveillance. Still asking questions.

Along the way I built a free online resource that pulls together and cites the latest research on supplements, exercise and lifestyle interventions by evidence quality — because I got tired of trying to internet anecdotes from actual peer-reviewed evidence. Happy to share if useful.

Paul

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

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Paul Sweeney | @paulsweeney | 22 hours ago
In reply to @dinu "Hi Paul, very interesting work you did. I am not sure if you heard of the..." + (show)
Profile picture for dinu @dinu

Hi Paul,

very interesting work you did. I am not sure if you heard of the AnCan Foundation (https://ancan.org/).
It is non-profit foundation that focuses on keeping up with the latest developments in the treatment of cancer, primarily prostate cancer. It is based out of US, but once a month we are having a 2-hr virtual support video chat where patients from Europe come by and share their journey and we exchange info on what treatments we did and so on.
Here is the link to one of the previous meetings.



We are having the April meeting Wednesday, 15th, at 20:00CET (19:00 GMT).
This is the link to the meeting.
https://ancan.org/barniskis
I think that even if you may be aware of many things that will be discussed in there, you can definitely be a resource for the other participants. There are several gents fro GB and Ireland in the chat already.
Thanks for the work and I hope to see you in the support group.

Stay strong and be positive!

Dinu

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@dinu this is amazing thank you! I'd love to join but unfortunately have a dinner engagement on the 15th. Please let me know when the next one comes up and in the meantime I'll check out these videos.

Thank you so much,

Paul S

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tattodice | @tattodice | 22 hours ago

Thank you smooth! I can view it now. Paul you have a book as well? Tell me more. I thought my anti inflammatory diet was excellent. Regular exercise routine. Then diagnosed with 4+3 and RALP in January. Open to making modifications in diet and exercise. Need help.

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dinu | @dinu | 21 hours ago
In reply to @paulsweeney "@dinu this is amazing thank you! I'd love to join but unfortunately have a dinner engagement..." + (show)
Profile picture for Paul Sweeney @paulsweeney

@dinu this is amazing thank you! I'd love to join but unfortunately have a dinner engagement on the 15th. Please let me know when the next one comes up and in the meantime I'll check out these videos.

Thank you so much,

Paul S

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@paulsweeney

No worries. We are meeting every third Wednesday of the month at the same time!

Stay strong and be positive.

Dinu

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handera | @handera | 21 hours ago
In reply to @paulsweeney "@handera wow, so great to meet like-minded people at last. Sometimes I've felt like a lone..." + (show)
Profile picture for Paul Sweeney @paulsweeney

@handera wow, so great to meet like-minded people at last. Sometimes I've felt like a lone lunatic deep in research and making decisions others found hard to understand. Thank you so much for buying the book and checking out the website - your's is the first real feeback I've had and it's made me very happy!

Please let me know if you think I've missed any useful interventions or you if yo have questions on any of the tier conclusions.

Many thanks,

Paul

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@paulsweeney

I know what you mean regarding feeling alone, deep in research and being misunderstood regarding intervention based active surveillance.

As of 2020, ~60% of those diagnosed with low risk PCa (Gleason 3+3) opted for AS, whereas it drops to 13.5% for those diagnosed with favorable intermediate risk (Gleason 3+4) and 3.1% for those diagnosed with unfavorable intermediate risk (Gleason 4+3).

These figures have significantly increased since 2010 and are most likely even higher in 2026 (see https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2822716)

This support group has wonderful folks over the entire spectrum of PCa severity and aggressiveness. Their questions, decisions, experience and personal outcomes shape their comments. While I think the majority in this group have decided on some type of active treatment, I appreciate their experiences and comments.

The one thing we can all agree upon is that a man needs to become his own best advocate and that each decision will look quite different, primarily driven by one's risk tolerance.

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shalom7777777 | @shalom7777777 | 20 hours ago
In reply to @paulsweeney "@shalom7777777 last biopsy was in December. Exactly the same results as 2022. Cancer in 10/20 cores...." + (show)
Profile picture for Paul Sweeney @paulsweeney

@shalom7777777 last biopsy was in December. Exactly the same results as 2022. Cancer in 10/20 cores. Gleason 3+4. 3mm average of grade 4. I had a PSMA Pet scan in 2022. No evidence of metastatic cancer at that time.

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@paulsweeney
Thanks for replying. That sounds great! All the best to you!

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Paul Sweeney | @paulsweeney | 19 hours ago
In reply to @handera "@paulsweeney I know what you mean regarding feeling alone, deep in research and being misunderstood regarding..." + (show)
Profile picture for handera @handera

@paulsweeney

I know what you mean regarding feeling alone, deep in research and being misunderstood regarding intervention based active surveillance.

As of 2020, ~60% of those diagnosed with low risk PCa (Gleason 3+3) opted for AS, whereas it drops to 13.5% for those diagnosed with favorable intermediate risk (Gleason 3+4) and 3.1% for those diagnosed with unfavorable intermediate risk (Gleason 4+3).

These figures have significantly increased since 2010 and are most likely even higher in 2026 (see https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2822716)

This support group has wonderful folks over the entire spectrum of PCa severity and aggressiveness. Their questions, decisions, experience and personal outcomes shape their comments. While I think the majority in this group have decided on some type of active treatment, I appreciate their experiences and comments.

The one thing we can all agree upon is that a man needs to become his own best advocate and that each decision will look quite different, primarily driven by one's risk tolerance.

Jump to this post

@handera absolutely! You'll see from the book that our thinking is very aligned on this point.

Paul

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