What I learned at the prostate conference

Here are my thoughts and feelings on the PCRI conference.

I attended the PCRI conference for the first time. I was struck by the number of men with advanced disease and pleasantly surprised by the number of men on AS and many with G3+4.
The keynote folks had one theme and that is seeking docs with high expertise. Caution on using someone who is a part time prostate doc, or said differently more focused on all urologic issues. The point was made there are 2000 published papers on prostate annually and there is no way a doc can keep up with all the literature unless they focus.
I was also surprised by the facts that pathologists have a 30% intra and inter-rater reliability error rate, including Epstein. Epstein was asked does he look at all slides that come into JH. He had a tentative answer that if his signature was on it “I should have looked at it” That did not give me a warm fuzzy. One statement, by one of the lead docs, was made that if your trust your Uro and he trusts the pathologist you should also.
One interesting study was done in the UK, protect study, recently reported no sig diff in the 10-year survival rate of a purely random assignment of 1500 men to AS, Surgery, and radiation. They also reported that 40 % of the AS group had intervention within 10 years. That also means 60% of the AS men had no intervention and 60% of the other two groups had an unnecessary intervention.
The presenters were critical of their field from a patient focus perspective and a bias towards their specialty for intervention. Many of the men I met had poor experiences with at least one doctor, some a few. Also, the danger of biopsy was discussed at length. Sepsis is a real threat and I met at least four guys who had it and were gravely ill. Many of the docs were discussing the overuse of biopsy.
Many of the sessions and vendors were more about advanced stage cancer. Not one presentation or vendor or breakout group on surgery. Genomics was discussed a lot and many felt it and gene therapies are the future.
I attended three AS sessions and the theme I gathered from most of the guys was a tug of war between acting too soon and not acting soon enough. However, there were many long term AS guys who said this feeling will pass. Virtually every guy who is new at this had genomic testing like Polaris, Oncotype or decipher. Most of the seasoned guys do 3-month PSA and periodic Doppler ultrasound or t3 MRI. Annual biopsy is on the decline.
PSA doubling time seems to be the big warning sign. There was very little reference to Dr. Klotz’s work in Canada. Bias seems to be the big threat to managing this disease. Bias by docs and patients. We need to be educated on our disease, be assertive in talking with our docs and at some point, trust our docs or if we can’t get another doc.
There was much discussion on diet and exercise. Common themes on diet were plant based, many guys went vegetarian, and low carb and eliminate dairy. Everyone seemed to agree that meat is out.
I found the conference informative and supportive. I am glad I went. I am not sure anything dramatic happened for me. I am more confident in my current state and current thinking. I do believe many men on AS will have an intervention. There was one guy who shared after 7years he had a successful intervention and that intervention was not available when he was first diagnosed, so the AS delay worked in his favor.
It was great to be around a bunch of guys in the same boat (800 attendees) and to have a variety of docs there to explain aspects of this disease. There were about 1/3 of guys with their spouses. It was a good investment and I may go back next year.

Thank you for sharing.

Norm I am adjusting my diet. I am pescatarian and eat dairy. I am going to eliminate dairy and eggs. I am going to lower my carbs and cut back or eliminate fish. I walk the golf course nearly every day of the week and I have restarted my running. I also eliminated artificial sweeteners about a month ago. When we return to Florida in a few weeks going to add yoga as part of my weekly routine (can't walk the golf course where I live).

I also will continue my intense study of the literature on this disease. I meet with Uro in coulple weeks and will confirm that AS is appropriate and what our AS plan is.

And I am going to continue to love retirement. I have a dive trip; planned, a ski trip planned, my wife and I will get away on the trike, and we have our semi annual trip to Hawaii in November. I also will do more bike riding in Florida.

Finally, I plan to be an advocate for prostate awareness, not sure yet exactly how. I know we can impact catching this disease early if we all speak up.

Thanks, Denis

Thank for a most interesting report, Denis.

What specifically, were the reasons that motivated you to cut back or eliminate fish? Anything learned about lean, organic, poultry??

NKinney thanks for the thoughts. I think my doc has a planned confirmation biopsy, will find out in a couple of weeks. However, 12 core biopsy sample less than 1% of the prostate. So from a probability standpoint, this is a very unreliable test. I think at the conference it was stated 40% error rate. Clearly, an MRI guided one is better but MRIs have the same error rate. The fidelity of the MRI is the issue, even the new 3T can only see PC when it is a certain size, and biopsies are such a dart throw we cannot count on them as evidence of no progression.

With that said I will probably have one, again because I want to feel I am doing something. The real key s looking at all the evidence, PSA kinetics, DRE, MRI, and Biopsies. I just need to be aware the risk a biopsy offers, deaths do happen. Denis

Subdenis (and Hope4Happiness),

I'd just like to help make clear the point that the risk reduction effects of the confirmatory biopsy are multiplicative...that is, when taken together the long term risks continue to decrease with each subsequent assessment.

I'll help provide you with some reading materials. You will begin to recognize the leading names in the world of Active Surveillance, and you were no doubt exposed initially to some at PCRI. Names like Klotz, Carroll, Carter, Cooperberg...these are some of the doctors who are AS gurus.

Here's a link to "Active Surveillance for Prostate Cancer: A Systematic Review of the Literature" co-written by many of the gurus.

One of the tables shows "Outcomes from confirmatory or first surveillance prostate biopsy" at the leading AS institutions: Johns Hopkins, UCSF, MSKCC, and Univ of Miami. Summarizing:

• about a quarter of the initially low-risk category men showed an increased grade which was likely due to undersampling, and they likely moved on to treatment. (Separate studies show this profile of men has exactly the same treatment success rate as those with the same profile who go to immediate treatment.)
  
  
• about half of the men had no change in biopsy results, and the 2nd confirmatory biopsy indicated that they should begin following Active Surveillance protocols.
  
  
• but about a quarter of the men showed no cancer in their confirmatory biopsy, largely confirming the truly indolent or incidental nature of their initial findings. Let that sink in. Many peers of these men (like me), with these very same initial findings of low-grade cancer, might have otherwise leaped directly without any other follow-up into an aggressive, irreversible treatment laden with onerous side effects. These men need to continue to monitor closely, but treatment in the immediate term is completely off the table.

I mentioned earlier that in some AS protocols, the 2nd confirmatory step may not even be a biopsy. More recently, for selected patients, Klotz is prescribing a mp-MRI and if results are negative, biopsy is optional. See HERE.

Subdenis and Hope4Happiness, information is key to building your understanding and confidence in the AS protocols. Read on!

Nkinney thanks. At the conference, I think they aid MRIs miss 30 or40% as do biopsies. Yale's protocol is a confirmation biopsy and if my doc wants to do that I will agree. Denis

I love fish and dairy . Are u saying that just guys on AS should cut those out or anyone with PCa including those like me who have had multiple treatments and recurrences?
I know of no benefit from diet for advanced PCa .
Bob

The PCRI break-out session on how to best use the internet for PCa education is now available for viewing with PCRI blessing.The recording and slides here:
https://www.ancan.org/recorded-calls.
Look under 'Plenary Sessions & Special Topics'.

Much thanks to Jake Hannam who patched together the slides and audio because I forgot to share my screen on the GtM recording.

Onward & upwards, rd