Moderator and Board Chair Peter Kafka’s message in his Low/Intermediate Prostate Cancer virtual group reminder this week, is very applicable to ALL PCa patients .,.. and maybe other conditions too; this same topic came up recently in the context of MS!
Speaking of MS, we are kicking off our new MS virtual group on Tuesday, Sept 24 … please make anyone you know dealing with this condition aware. Like all our meetings, the meeting is free and drop-in. Sign up by visiting www.ancan.org.
Kudos, Peter ….
As I sit down and write this evening, I find myself at the annual PCRI (Prostate Cancer Research Institute) conference in Los Angeles. It has been a very full two days thus far and another day coming up tomorrow to conclude. This is no doubt the largest patient oriented prostate cancer conference to be found anywhere and quite a remarkable and impressive assembly of patients, care givers and medical professionals. I am understandably overwhelmed.
I think the old phrase, “leave no stone unturned” has taken on new meaning for me this weekend. I am not sure I fully grasped just how complex the disease of prostate cancer is and how many facets there are to the development, diagnosis, and treatment there are to this condition. I have been dealing with my own situation for some 6 years or so as well as trying to help many other men find their way through the maze which prostate cancer can be sometimes. But this weekend it became clearer to me that we have outgrown all the old treatment modalities and understandings of this disease. I know that there are still lone urologists out there who believe that they can diagnose, treat and guide men through any aspect of prostate cancer. And perhaps you have relied on such a medical professional or still do. But I believe that the model of one man – one doctor is way out of date. So much has changed and is changing in the world of prostate cancer in the past few years that no one doctor can possibly keep up to date with all the advancements. It takes a team; it takes collective knowledge.
Enjoy listening to this AnCan virtual session where we discussed:
Zytiga + LHRH; lower dose LHRH; RT urinary side effects; Nubeqa after monotherapy Erleada; joint & muscle pain issues; does fasting effect disease progression?; back related issues; IHT discussion; Book of Joy; Antonarakis referral @ Hopkins; SBRT for spot radiation
Reports on Bill Burhans and Richard Foody; moving from enzalutamide to abiraterone; choice of steroid with abi; ADT induced depression; spot radiation for mets; how come your penis woke up?; bone biopsy experience; find the right QB for your medical team; has ADT nailed your balance?
Catching up with a good buddy yesterday, he mentioned he had recently published an article! Now in my biz, most of you would not find that at all unusual, not even in a peer reviewed journal, since you know I often speak with clinical researchers!
But what if I reveal this friend is not a doctor, nor a researcher, a scientist or even a patient; he’s a journalist, albeit a health one, and the research paper is in BMC Medicine … ‘BMC’ stands for BioMedical Central. And the paper looks at whether patients and caregivers are influenced by ‘spin’ when medical research is reported.
Needless to say, the answer is very much so. This randomized trial of 900 patients and caregivers sourced from the Inspire forums was split into 3 groups each considering a different story. Half of each group were given a published ‘spun’ story, and the other half were given the ‘denuded’ rewrite. Both groups were asked the same question – would the reported treatment be beneficial to patients? The ‘spun’ versions were considered 30%more valuable for early research trials; and for later stage research the spun stories were thought to be 47% more helpful..
You have heard me say all too often, don’t believe all you read …. process this information with a grain of salt, and consider the source. Now that advice is no longer anecdotal!!
