Month 128 – Doing Your Research for PCa

“It’s been a quiet week in Lake Wobegon, my hometown…”

Yeah, right.

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.

Other Resources

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

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.

Be well!

Day 3,260 – Research Articles on Prostate Cancer

One of the cool things about working in a hospital is that I can access full versions of some of the scholarly articles on prostate cancer that are normally blocked to the public by their publishers. At the end of the day today, I pulled the full versions of each of these articles for a little light bedtime reading about salvage radiation therapy, toxicities, and imaging:

Long-term Outcome of Prostate Cancer Patients Who Exhibit Biochemical Failure Despite Salvage Radiation Therapy After Radical Prostatectomy.

Improved toxicity profile following high-dose postprostatectomy salvage radiation therapy with intensity-modulated radiation therapy.

Long-term outcomes after high-dose postprostatectomy salvage radiation treatment.

Multimodality Imaging of Prostate Cancer.

Salvage radiotherapy after radical prostatectomy: Long-term results of urinary incontinence, toxicity and treatment outcomes

Outcomes of salvage radiotherapy for recurrent prostate cancer after radical prostatectomy.

I skimmed a couple of them on the bus ride home this evening (as much as you can skim on a bouncing bus), and I’ll go through each in a little more detail before my appointment a week from tomorrow.

When I pull articles like this, I consider a few things when reading them:

  • When was the article published? Obviously, more recent is generally better, although you can’t discount data from earlier studies entirely.
  • What type of research was done? Was it a retrospective study of historical medical records or was it a full-blown trial?
  • How many patients were included in the study? Fewer patients (<100) may yield less reliable results than those that include several thousand.
  • Over what time period did the study look at patients? Studies that looked at records from the 1990’s into the early 2000’s will reflect the treatment options and technologies available at that time. Studies done more recently will reflect the impact of newer treatment options and technologies.
  • Who conducted or funded the study? Who’s conducting a study and how it’s paid for could, in theory, perhaps skew the results (e.g., Big Pharma wanting to push a new drug).

So I’ll be going through each article, gleaning whatever I think may be of value for the appointment, adding to my list of questions to be asked.

Please don’t ask me to share the full versions of the articles here or elsewhere. Not only am I cancer-averse, I’m litigation averse. I’m not keen on a copyright infringement lawsuit because I posted something on this blog/website that I didn’t have permission to do. 🙂

That said, I may try to summarize some of the findings in future posts, with full attribution of any quotes, of course.

Off to read a bedtime story or two…