I'm sorry you and your husband are dealing with terrible disease. Prostate cancer is highly heterogenous, meaning highly variable in presentation. "...it is possible that tumors with a higher Gleason grade have a greater chance for occurrence of a clonal shift in the original tumor that may express the features of other prostate cancers, including biological aggressiveness, and that such tumors may be associated with a lack of PSA production. The phenomenon of prostate cancer progression without concomitant PSA elevation may be explained by the proliferation of cell lines that either cannot produce PSA or are poorly differentiated prostate cancer cells that have lost their ability to express PSA."
Thanks so much, Dr. Holden, for your kind words and for sending this article. This one is from 2010 so we probably missed it, since we usually limit our search results to recently published articles (in the last year or so).
Consider joining our AnCan Advanced Prostate Cancer virtual support group. There's a wealth of high level peer information. It meets weekly and is free and drop-in. Also our for you, the Stage 3 and 4 Cancer Care Partners Group is a very supportive. For more info and to sign up for our Newsletter/Reminder, go to https://ancan.org.
Howard Wolinsky and Mason are both moderators for our pre-treatment AS group, and Howard is on our Advisory Board.
It's difficult to know what the best path for treatment is, or if more testing will be beneficial. Many tests seem to be indicators of whether or not we need more tests or different tests.
Also, your observation that fact many patients become their best advocates is spot on. I am constantly impressed at the way many men become knowledgeable and well-spoken healthcare advocates.
I often think of our online meetings as being a visit to a Prostate Cancer Library. Each man has his own story and book to share with us. Many men have an area of experience to share with us. An area we are often seeking both help and knowledge about. mason
Thanks, Mason! I like the idea of a visit to a Prostate Cancer Library! That's why we are sharing our story--we are constantly surprised as we talk to friends, how little is known on the topic. We feel sure that if we'd had some of the info we are sharing now earlier in our process, the treatments we endured could have been avoided. As we dug deeper into the research we discovered just how devastating prostate cancer can be if not caught earlier and on, and on top of that, thousands of men and their families that have been over diagnosed and treated unnecessarily with many cases affecting their QOL for the remainder of their lives. Sharing knowledge is the way to go!
I'm sorry you and your husband are dealing with terrible disease. Prostate cancer is highly heterogenous, meaning highly variable in presentation. "...it is possible that tumors with a higher Gleason grade have a greater chance for occurrence of a clonal shift in the original tumor that may express the features of other prostate cancers, including biological aggressiveness, and that such tumors may be associated with a lack of PSA production. The phenomenon of prostate cancer progression without concomitant PSA elevation may be explained by the proliferation of cell lines that either cannot produce PSA or are poorly differentiated prostate cancer cells that have lost their ability to express PSA."
https://pmc.ncbi.nlm.nih.gov/articles/PMC2873892/?utm_source=perplexity
Thanks so much, Dr. Holden, for your kind words and for sending this article. This one is from 2010 so we probably missed it, since we usually limit our search results to recently published articles (in the last year or so).
Consider joining our AnCan Advanced Prostate Cancer virtual support group. There's a wealth of high level peer information. It meets weekly and is free and drop-in. Also our for you, the Stage 3 and 4 Cancer Care Partners Group is a very supportive. For more info and to sign up for our Newsletter/Reminder, go to https://ancan.org.
Howard Wolinsky and Mason are both moderators for our pre-treatment AS group, and Howard is on our Advisory Board.
Thank you Richard!
Brenna - here's a great discussion from the Jan 14, 2025 meeting discussing T replacement for men with advanced PCa.
We just sent this to someone else earlier today. They already responded saying they found it really helpful https://www.youtube.com/watch?v=mG0mDg3VqVg&t=3501s
It's difficult to know what the best path for treatment is, or if more testing will be beneficial. Many tests seem to be indicators of whether or not we need more tests or different tests.
Also, your observation that fact many patients become their best advocates is spot on. I am constantly impressed at the way many men become knowledgeable and well-spoken healthcare advocates.
I often think of our online meetings as being a visit to a Prostate Cancer Library. Each man has his own story and book to share with us. Many men have an area of experience to share with us. An area we are often seeking both help and knowledge about. mason
Thanks, Mason! I like the idea of a visit to a Prostate Cancer Library! That's why we are sharing our story--we are constantly surprised as we talk to friends, how little is known on the topic. We feel sure that if we'd had some of the info we are sharing now earlier in our process, the treatments we endured could have been avoided. As we dug deeper into the research we discovered just how devastating prostate cancer can be if not caught earlier and on, and on top of that, thousands of men and their families that have been over diagnosed and treated unnecessarily with many cases affecting their QOL for the remainder of their lives. Sharing knowledge is the way to go!