“It’s been a quiet week in Lake Wobegon, my hometown…”
There’s really nothing new to report regarding the PSMA PET scan and insurance coverage. I’m still awaiting explicit clarification that I will be covered and that UCLA is in-network. More to come.
What I do want to talk about in this month’s post is some of the resources that I routinely use to do my research on all of this. There are a few that I believe have high quality, easy-to-understand information for patients, and there are a few that keep you informed of the latest research and treatment options.
As you’ve seen in a few of my recent posts, I’ve been a little late to the game in terms of finding some very educational YouTube videos that talk about prostate cancer and treatment options. I may create playlists of videos that I’ve saved on the YouTube account associated with my contact information.
Prostate Cancer Research Institute
The Prostate Cancer Research Institute is a wealth of information that’s presented in such a way that patients and their partners can easily understand. My only criticism is their color-coded staging system that they use. I believe they created it thinking it would simplify things, but it’s not used beyond PCRI (as far as I can tell), so it can be quite foreign initially.
PCRI’s videos are short and packed with information. They also answer a number of the more common viewers’ questions left in the comments.
Lastly, they do have a patient helpline that you can access either online or via phone. They were pretty timely in their response to an online question that I submitted.
The New Prostate Cancer Infolink
The New Prostate Cancer Infolink is a great source of information regarding current research on a variety of prostate cancer-related topics. The website isn’t the most aesthetically pleasing, but there is a wealth of current information available. Some of it is a bit on the technical side, but most of the posts include links to the specific research articles they mention. That can be handy if you’re the type of person who likes to read that stuff. (Hmmm… Remind you of anyone in particular???)
I’ve found that the authors are generally responsive to comments or questions left on the post.
You can check out the Resources page on my blog to learn about a number of other resources. Some are quite general in their approach to educating patients, some are a bit more specific, and, sadly(?), some to be more focused on fundraising than patient education. Don’t get me wrong, Funding research is critically important. It’s just that you may not find some of the detailed information you’re seeking on those sites.
The other thing that’s interesting is how each major organization interprets the same topic and provides oftentimes differing information between organizations. Welcome to the frustration of prostate cancer research. I tend to look for the commonality between the information being shared, and that tends to reinforce that it’s a more widely accepted approach.
Lastly, I always look at the “freshness” of the articles or papers that I’m reading. Were the written in 2020, or in 1997? That can make a significant difference, too. When you’re looking at retrospective studies that tracked patients for 7, 10, 15, or more years, you have to remember that treatment technologies and methods have changed in those periods of time. So the statistics you’ll see in the report may be slightly biased because of their age and the changes in the field of prostate cancer management.
Of course, always be wary of prostate cancer blogs written by crazy, bitter old men sitting around in their underwear on their computers… Be especially wary of #13 and #26 on this list. 😂
Research Pays Off
Yes, researching prostate cancer can be absolutely maddening but, if you do it correctly, it will pay off in the end. It makes you a much better educated patient, and you can have far more credibility and influence with your medical team than if you’re just along for the ride. And if you think the doctors don’t notice, they do. Here’s my doctor’s notes from my last visit:
Very well informed about his disease. Uses MSK nomogram.
He brings an article regarding68Ga-PSMA 11 PET scan. He
reports that if PSA is truly at 0.21 that he would like to
complete, even if he needs to pay out of pocket.
He is involved with support groups and has a blog Dansjourney.com
I was a little disappointed, however, that there was no ⭐. 😂🤣😂
Okay. Enough silliness. Time to put my pants on, step away from the keyboard, and enjoy the 75° F / 24° C San Diego day.