Hello from a difficult patient in London

Please share

Hi Paul, welcome to the group. You say four years on no progression. Have you had a recent biopsy and PSMA Pet scan done? Can you also please share your biopsy results? Thank you.

@tattodice it's at evidence.zone

Paul

Hello Paul,

Thanks for introducing yourself to this support group and assembling your website...I look forward to reading your book!

I was also diagnosed with Gleason 3+4 in Oct '23 and (as a retired chemical engineer who spent 45 years in R&D) have been very keen on asking questions and researching answers regarding active surveillance for low risk PCa.

I've been a member of this support group since my diagnosis and have summarized my situation in my profile.

I have also posted many discussion items including a lot of the information I found, my experience with implementation of various interventions and things that I have found to work since embarking on my AS journey.

As I read through your website I can confirm it is exactly inline with my research. Thanks for assembling it in such a helpful and concise format....you have done a great service for those who are serious about what I call "aggressive active surveillance"!

I'm a a huge advocate for the ERASE randomized clinical trial and started implementing that protocol immediately after being diagnosed. I've continued that protocol for the last 2.5 years, actually adding to it...three Zone 2 5K's/week, which is a very sustainable and safe pace to work towards for those who desire to include HIIT. I also found that two 0.25 mile HIIT runs (after each Zone 2 5K) is all that is required to get extremely fit (my VO2 Max is 49, at 69.5 y/o....in the top 4% for my age).

I noticed you put the ERASE study as "Tier One" and the "Strongest exercise evidence for active surveillance — PSA reduced, anxiety improved"...I'm living proof that it works for those diagnosed with low risk PCa.

As I have said other places in this support group, either my stablized/reversed PCa progression results are directly attributed to the implementation of ERASE OR my original diagnosis was completely in error and I never had Gleason 3+4 in the first place (contrary to my original MRI-directed ultrasound-fusion targeted biopsy).

My urologist tends to believe the later, indicating that mpMRI's are "notoriously inaccurate". He (like most) find it hard to believe that PCa can simply "go away"...maybe he's right...but trying to explain how three lesions, including a PIRADS 3, PIRADS 4 and PIRADS 5 in my original mpMRI simply can't be seen anymore, is a little disconcerting to a physician when you tell him that you have done NO active treatment and that your treatment is running 🙂 Either way he has a dilemma, if mpMRI's are "notoriously inaccurate"; then why should I bother or believe that a new one is "accurate" when the earlier ones get dismissed. Not to mention my biopsy that found two of the now invisible lesions were Gleason 3+3....anyway I think you understand where I'm coming from...

In any case, thanks again for your work in putting together your evidence website, I look forward to reading your book!

All the best!

I also really like how your http://www.evidence.zone.com website helps to dispel the notion that single ingredient supplements are beneficial. I think you are spot on regarding this assessment!

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.

Stay strong and be positive!

Dinu

Paul can not open or view your site. Any suggestions?

@tattodice The url is https://evidence.zone

@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.

As per @smoore4 below. Let me know if you are seeing an error message?

@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