my takeaways from 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.