Hello from a difficult patient in London

Hi Paul,

Just saw this thread a few minutes ago, so obviously not read all your materials yet. But I will say that I did AS for 15 years after diagnosis in 2011. 3+4 Gleason. Studied PC hugely and found a doctor that actually recommended AS. He was way out of the mainstream then, but has been proven right, and now HE is mainstream. My psa started rising last two years, biopsied at Gleason 8, and I did radiation. But I had 15 YEARS of a great life unaffected by treatment side effects. All the while, med research progressed, treatment options expanded exponentially, and techniques improved. SBRT was not even a thing when I was diagnosed. What will happen in the next 15 years?

If you are diagnosed with PC, slow down, study, learn before jumping into treatment.

@paulsweeney got the book yesterday and almost finished reading it…thanks for writing it and all your work that went into it! I’ll be referring to it a lot!

Amazing. Thank you so much. Your feedback means a lot.

Paul

I visited the evidence.zone site. Thank-you very much. There's a lot of useful information there.

@drewlevine thank you so much for the feedback, it means a lot. Please let me have any ideas to make the site more useful.

Paul

Hi @paulsweeney

I just got your book and already a few chapters in. I can definitely relate to your journey and being marked as a difficult patient. 😎

I am not in the camp of treat early and/or the standard of care treatments (cut/burn/poison) for Gleason 6 or 7. I have consulted 3 urologists in Sevilla and 3 in New York. No surprise that all were surgeons and would recommend RARP 😎.

I am still researching the less invasive options that keep both quality of live + longevity in high regard. I only participated in a clinical trial at Mount Sinai in 2024. Looks like they are still recruiting if anyone is interested.
https://www.mountsinai.org/clinical-trials/intratumoral-systemic-hiltonol-poly-iclc-in-prostate-cancer-patients-on-active-surveillance
Checking out https://evidence.zone/ as well. Looking forward to see innovations, findings and experiences until or when treatment becomes necessary.

Cheers
Dutchie

@paulsweeney

Dear, Paul

I read your amazing website with great interest.

I've already followed some of its recommendations. But I have a question for you. Have you stopped taking ADT and have been taking supplements all this time?

I have Gleason 9, a severe variant. Should I buy Pomi-T? Will it be effective?

I'm currently taking ADT and Erleada and am worried about resistance. Thank you, and God bless you!

@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

@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

@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