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Hello from a difficult patient in London

Posted by Paul Sweeney @paulsweeney, Apr 12 5:06pm

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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Dutchie_NYC | @vonsm01 | May 21 7:48am
In reply to @alangjonesrs999 "@vonsm01 Look ay Cyberknife. I am a retired Surgeon UK. Lookedcat ALL reasearch papers US and..." + (show)
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@vonsm01 Look ay Cyberknife. I am a retired Surgeon UK. Lookedcat ALL reasearch papers US and UK. Chose it 6 years ago and psa is < 0.01 still. No regrets

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@alangjonesrs999

Thank you Alan! I heard similar experiences from UK friends who retired in Spain while I was living there! This PCA journey makes you take you stop and research all options and where treatments are available. The specialists in the medical studies are from all over the world …. but treatments are not available everywhere or sometimes you are not eligible for some.

Regards
Michel Vons

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Dutchie_NYC | @vonsm01 | May 21 8:00am
In reply to @paulsweeney "@vonsm01 Hi Dutchie, Six urologist consultations and all six recommended surgery — that sounds about right...." + (show)
Profile picture for Paul Sweeney @paulsweeney

@vonsm01 Hi Dutchie,

Six urologist consultations and all six recommended surgery — that sounds about right. As they say, when you're a hammer, everything looks like a nail.

Thanks for sharing the Mount Sinai trial — I hadn't come across that one. Poly-ICLC injected directly into the tumour in AS patients is a fascinating approach. Immunotherapy in the active surveillance space is still early days but it's one of the most interesting research directions out there.

The fact that you participated in it is great — these trials only happen because men like you volunteer. I have to ask, how was it for you? Any positive outcomes?

Glad you're looking at evidence.zone too. If you spot anything missing or think something needs correcting, let me know — that's how it gets better.

Also really glad you're finding the book useful — I'd be very grateful for a review if you had time.

Best wishes,

Paul

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@paulsweeney

Hi Paul,

I just started a new job and will circle back later to share my clinical trial experience with Poly-ICLC at Mount Sinai.

Regards
Michel Vons

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1 reply
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Paul Sweeney | @paulsweeney | May 21 9:39am
In reply to @vonsm01 "@paulsweeney Hi Paul, I just started a new job and will circle back later to share..." + (show)
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@paulsweeney

Hi Paul,

I just started a new job and will circle back later to share my clinical trial experience with Poly-ICLC at Mount Sinai.

Regards
Michel Vons

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@vonsm01 brilliant thank you.

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denis76 | @denis76 | May 21 1:20pm
In reply to @paulsweeney "@denis76 Thank you for the kind words, and I'm glad the site has been useful. I..." + (show)
Profile picture for Paul Sweeney @paulsweeney

@denis76 Thank you for the kind words, and I'm glad the site has been useful.

I want to be upfront with you — my situation is very different from yours. I have Gleason 3+4, which is intermediate risk. I've never been on ADT. Evidence.zone is primarily built for men on active surveillance with low-to-intermediate risk disease, and the studies I reference are mostly in that population.

Gleason 9 is a different disease with different treatment priorities, and I don't want to give you the impression that what works for someone like me is automatically relevant for you.

That said, to answer your specific question about Pomi-T — the original trial involved men with low-risk prostate cancer, not men on ADT. Professor Thomas's newer trial (YourPhyto + YourGutPlus, published in European Urology Oncology 2025) also studied men not taking ADT. So we don't have direct evidence for these supplements in your situation.

What I would say is that the general principles of eating well, exercising, managing stress, and supporting your overall health are important at every stage of the disease. Some of the dietary interventions on evidence.zone — lycopene from cooked tomatoes, omega-3, plant diversity, reducing dairy — are low-cost, low-risk, and unlikely to interfere with your treatment.

But please talk to your oncologist before adding any supplements, because some can interact with ADT or Erleada. Berberine and green tea extract in particular have CYP enzyme interactions that could affect drug metabolism.

I really hope things go well for you. Keep asking questions — that's the most important thing any of us can do.

Paul

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@paulsweeney

Yes, Paul, thank you very much for your reply.

I've been drinking green tea for a while now, and is it incompatible with Erleada? Or did I misunderstand you?

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Paul Sweeney | @paulsweeney | May 21 3:11pm
In reply to @denis76 "@paulsweeney Yes, Paul, thank you very much for your reply. I've been drinking green tea for..." + (show)
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@paulsweeney

Yes, Paul, thank you very much for your reply.

I've been drinking green tea for a while now, and is it incompatible with Erleada? Or did I misunderstand you?

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@denis76 Denis, good question and no you didn't misunderstand — I should have been clearer.

The short answer: drinking green tea in normal amounts (2-3 cups a day) is very unlikely to cause a problem with Erleada.

What I was flagging is the interaction risk with high-dose green tea extract supplements (EGCG capsules), which deliver much higher concentrations than a cup of tea.

Here's the detail. Erleada (apalutamide) is metabolised by CYP2C8 and CYP3A4 enzymes. Green tea catechins, particularly EGCG, can inhibit CYP3A4 — and strong CYP3A4 inhibitors can increase Erleada's active metabolite levels, which could potentially increase side effects.

However, one clinical study found that EGCG at 800mg/day did not inhibit CYP3A4 to a clinically significant degree.

A cup of green tea contains roughly 50-100mg of EGCG, so at 2-3 cups a day you're well below levels that would meaningfully affect drug metabolism.

The concern is really about concentrated EGCG supplement capsules (typically 400-800mg per dose) rather than brewed tea.

That's why evidence.zone has separate cards for Green Tea (Dietary) and Green Tea Extract (EGCG Capsules) — they're different interventions with different risks.

Paul

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