Best blogs & forums that track progress in prostate cancer treatment?

September 27, 2018 9:09 AM

After 8 years of relative quiet, someone very close to me is seeing their prostate cancer come back in the form of elevated and rising PSA levels. I am seeking blogs, forums, communities, newsletters, and other sources of information so we can quickly get up-to-date on the latest treatments, clinical trials, and other relevant information. Thanks.
posted by fake to Health & Fitness (4 answers total)

These are the best according to a friend who asked me to help him research information about prostate cancer. Health Unlocked is best for recurrent prostate cancer. A blogger named "Tall Allen" comments on the first two. He's a layperson with PCa but has deep knowledge of the subject. The third link his his blog. He knows every worthwhile study. Make sure to follow him on Health Unlocked.

https://healthunlocked.com/advanced-prostate-cancer

https://www.healingwell.com/community/default.aspx?f=35

https://pcnrv.blogspot.com/2016/09/most-of-recurrences-after-primary.html
posted by Elsie at 1:14 PM on September 27, 2018

The National Cancer Institute is a good starting point - they have a page, updated relatively frequently, on research in prostate cancer. This is their landing page for patients.

The American Cancer Society has a forum for prostate cancer here. Here's a curated list of other forums from a couple years ago, and a list of blogs from last year.

Best wishes to you both.
posted by acridrabbit at 1:17 PM on September 27, 2018 [1 favorite]

I keep my eye on prostate cancer news as a person with testicles and also as a person who knows guys who have been diagnosed. (Also, my dear aunt is a cancer research administrator, and she often drops Useful News my way.) That said: I believe that this is a disease seeing changes in treatment guidance and so I suggest that you make sure your friend gets a second opinion.

It would be starkly ageist (and overly simplistic) to claim that a younger doctor would be better then an older doctor for prostate cancer. Instead, just remember that approaches to cancer are changing rapidly, so be sure your friend's doc is staying current.

You can follow along with the NIH web pages, but GPs and oncologists will be getting different and more-specific information that you and I see in the newspapers. That said, ask your doctors as many questions as you need in order to understand what you're being told. Write down everything, and look it all up after the appointments.

Good luck to you all.
posted by wenestvedt at 9:47 AM on September 28, 2018

Prostatepedia.net has a subscription service with access to previous articles/blogs produced by or via Dr. Snuffy Myers, who knows about all there is.
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posted by Pressed Rat at 4:39 PM on September 28, 2018