For those other than Howard this is an email thread to Howard Wolinsky "THE ACTIVE SURVEILLOR" Author. It may be prudent to start at the bottom for my original Email to him. His publication is from his research and personal experience on active surveillance and for those who wish to just forgo treatment for a while or maybe forever. Please excuse typos...
Howard,
I am going to see what I can do about just that since I believe these Docs have something most men in these groups you and I frequent, need to know. That is, most likely there is no need for a fire drill to decide treatment urgently before they understand what they are doing and most men depending upon their age may have a decent chance @ no treatment for some time and maybe forever. They just need to take the time to do some research before they leap to "just get it out of me". The truth in this arena is very difficult to ferret out as you know better than I and the required research time is not anything to sneeze at if one is thoroughly trying to understand where they are in the diagnosis to treatment continuum. I have well over 1200 hours, maybe 1500, I've lost track. Then "WTF should I do" becomes the question of the month or year once they understand the alternatives of treatment and side effects. One does not need to spend that much time on the research actually if they have these two books along with a few others like "..Prostate Snatchers" by Dr. Scholz and Surviving Prostate Cancer by Patrick Walsh.
I am more dissatisfied with input I received early on about PSA and need for biopsy. I heard then "oh you need a biopsy" after moving from 3.9 to 4 PSA, and "oh we don't do transperineal biopsies", "oh you don't need an MRI", "I am ordering Orgovyx for you" without any explanation of the side effects or validation of the need, "we'll just get the fiducials placed so you can do radiation" . Wading thru this maze of crap was actually worse than having prostate cancer. PCa has been a cakewalk without the doc missteps, over diagnosis, and fear mongering with attempts to treat.
Howard, I have more and more respect for your approach and your own courage of your convictions along with all you deliver from your research and sleuthing for those of us who wish to take a quality of life approach instead of quantity of life due to fear. I wake up everyday without side effects of PCa treatment, in part, thanks to you and my own stubbornness and a crap detector I used when visiting every one of those docs. How can Nurse Ratchet say to a 69 year old man "YOU, have to have a biopsy" who just had a PSA rise from 3.9 to 4, when she has no idea the size of the prostate? I have No side effects because I have had no treatment. I have been 2.5 years with no side effects, no wet pants, no foggy brain, no bowel incontinence, no, no, no, anything painful or uncomfortable or downright emasculating, in part thanks to you Howard and some of those in the various groups who pointed me in different but right directions in the beginning.
I will seek to get you a little something for your newsletter regarding these books before the holidays.
I like Dr. Bert Vorstman as well and find him in the same artist arena of Uro docs. I forget which one of these guys coined the term "Artist" to describe the docs who listen and have the patient's interest at heart but I find it descriptive and know they are hard to find. My only doc here in the Denver area I thought did that with me was Dr. Kelley Simpson @ Anova Cancer Care, he was a rad. onc. but has just recently moved to Nebraska. So, I am without anyone left here I am interested in seeing until I find another artist.
I would love to be able to write like you or even remotely like you. I will think about sharing some details about both of these books when I finish them. I believe they are a truly a light in a very dark rock garden of prostate cancer treatment.
Strum's book is avail for about 5 bucks at Thrift Books on line. I just looked, in case you are interested in getting a copy. They are hard to find but they have a couple of copies now. Horan's book was hard to find for a while too.
Message from Don Kramer:
For those other than Howard this is an email thread to Howard Wolinsky "THE ACTIVE SURVEILLOR" Author. It may be prudent to start at the bottom for my original Email to him. His publication is from his research and personal experience on active surveillance and for those who wish to just forgo treatment for a while or maybe forever. Please excuse typos...
Howard,
I am going to see what I can do about just that since I believe these Docs have something most men in these groups you and I frequent, need to know. That is, most likely there is no need for a fire drill to decide treatment urgently before they understand what they are doing and most men depending upon their age may have a decent chance @ no treatment for some time and maybe forever. They just need to take the time to do some research before they leap to "just get it out of me". The truth in this arena is very difficult to ferret out as you know better than I and the required research time is not anything to sneeze at if one is thoroughly trying to understand where they are in the diagnosis to treatment continuum. I have well over 1200 hours, maybe 1500, I've lost track. Then "WTF should I do" becomes the question of the month or year once they understand the alternatives of treatment and side effects. One does not need to spend that much time on the research actually if they have these two books along with a few others like "..Prostate Snatchers" by Dr. Scholz and Surviving Prostate Cancer by Patrick Walsh.
I am more dissatisfied with input I received early on about PSA and need for biopsy. I heard then "oh you need a biopsy" after moving from 3.9 to 4 PSA, and "oh we don't do transperineal biopsies", "oh you don't need an MRI", "I am ordering Orgovyx for you" without any explanation of the side effects or validation of the need, "we'll just get the fiducials placed so you can do radiation" . Wading thru this maze of crap was actually worse than having prostate cancer. PCa has been a cakewalk without the doc missteps, over diagnosis, and fear mongering with attempts to treat.
Howard, I have more and more respect for your approach and your own courage of your convictions along with all you deliver from your research and sleuthing for those of us who wish to take a quality of life approach instead of quantity of life due to fear. I wake up everyday without side effects of PCa treatment, in part, thanks to you and my own stubbornness and a crap detector I used when visiting every one of those docs. How can Nurse Ratchet say to a 69 year old man "YOU, have to have a biopsy" who just had a PSA rise from 3.9 to 4, when she has no idea the size of the prostate? I have No side effects because I have had no treatment. I have been 2.5 years with no side effects, no wet pants, no foggy brain, no bowel incontinence, no, no, no, anything painful or uncomfortable or downright emasculating, in part thanks to you Howard and some of those in the various groups who pointed me in different but right directions in the beginning.
I will seek to get you a little something for your newsletter regarding these books before the holidays.
Best,
Don,
On Tuesday, August 8, 2023 at 12:48:16 PM MDT, Howard Wolinsky <howard.wolinsky@gmail.com> wrote:
You know. You could write a short outline with highlights?
On Tue, Aug 8, 2023 at 1:21 PM Don Kramer <dkramer502@aol.com> wrote:
Howard,
I like Dr. Bert Vorstman as well and find him in the same artist arena of Uro docs. I forget which one of these guys coined the term "Artist" to describe the docs who listen and have the patient's interest at heart but I find it descriptive and know they are hard to find. My only doc here in the Denver area I thought did that with me was Dr. Kelley Simpson @ Anova Cancer Care, he was a rad. onc. but has just recently moved to Nebraska. So, I am without anyone left here I am interested in seeing until I find another artist.
I would love to be able to write like you or even remotely like you. I will think about sharing some details about both of these books when I finish them. I believe they are a truly a light in a very dark rock garden of prostate cancer treatment.
Strum's book is avail for about 5 bucks at Thrift Books on line. I just looked, in case you are interested in getting a copy. They are hard to find but they have a couple of copies now. Horan's book was hard to find for a while too.
Be Well and keep up the good work Howard.
don