Wanted to share some positive things I have picked up on and
learned from my time at .person here would have a different list, but perhaps
I should have gotten a second opinion on my biopsy
I didn’t know that at the time in 2008, probably wouldn’t
make any difference in things nearly 5 years later.
Wished I had gotten second opinion on my surgical
I went from a 4+3 Gleason 7 to a 3+4 Gleason 7 post
surgery. However, my PC has acted
aggressive at every stage of treatment(s).
With both quickly failed surgery and salvage radiation, and a current
PSA of 60 and climbing, sure isn’t acting like a Gleason 7 of either
variety. Again, and I may be wrong,
probably too late to make any difference at this point, and I realize that
every PC case is uniquely different
After my surgery failed fast, I should have gone to a
good medical oncologist before seeing a Radiation oncologist
Just like many uro/surgeons push for surgery, many Radiation
Oncologists also push for SRT. While I
did “interview” 3 different RO’s, they were all in the same practice.
Both my oncologist, and the infamous Dr. “K”, both made it
clear, that they would have never recommended SRT to me, even though my PSA was
at .16 after 3 consecutive rises above .10.
Especially knowing that I had already underwent major radiation 10 years
prior with problems. They both felt it
was too early to pull the trigger, despite what the RO’s told me. I wish a thousand times over, that I had
trusted my gut feeling on the SRT, and we all know how the story turned out for
I have learned to accept and promote Active Surveillance
In 2008, it was still mostly known as Watchful Waiting (WW),
and with my stats, it was never an option.
However, from reading the endless stories even just here at HW PC, that
involve so many men fighting serious incontinence and/or ED issues, it makes
sense to me, that doctors should promote AS more, and men that safely meet the
criteria should strongly consider it.
Especialy with a lot of the Gleason 6 cases. There is always going to be that pure element
of chance, in how one will end up after their primary treatment is over,
especially if it is surgery, and even if it is nerve-sparing surgery. It’s a very complex and invasive surgery, and
the outcomes are more random, in my opinion, and cannot be predicted or
guaranteed by doctors. It involves
serious quality of life issues.
When I first got here in 2008, the prominent view was that
surgery was the gold standard, and more than a few men had the “I’ve got to get
it out of me” thinking. No judgement
intended. Tud (Jim) here was often the
lone ranger in trying to promote brachy (seeds), and his advice often fell to
deaf ears. I use to try to help him
promote seeds, as that was my first choice of treatment, but at the time, was
told I wasn’t eligible
Times have changed, primary treatments are rarely discussed
here with any particular bias anymore – a good thing.
AS is a very viable “treatment” choice, only hope its
accepted more by future PC men, and promoted and encouraged more by their
I believe there is a lot of overtreatment going on –
learned that here
There is no doubt that a lot of overtreatment of indolent
Gleason 6 cases happens. How much of it,
are the results of doctors pushing treatments, or how much of it is because of
the choice/mind set of the patient, it’s hard for me to ascertain.
Not only does it add millions (at least) to the total
healthcare costs in the US, but its putting men at risk for greatly diminished
quality of life issues that could be avoided.
I don’t have the answer or solutions. We even had recent threads on the subjects,
not sure what even the professionals are really feeling about with
solutions. I realize its complicated and
there are no easy answers, but acknowledging it, in my opinion, is the first
step to curbing it in the future
The “One Tent” HW PC is best for HW PC
Based on recent threads and even a poll, HW PC folks
overwhelmingly want to keep an “open tent” view of HW PC. Even Peter Waite expressed that opinion for
his HW site.
I would never want to see it segregated into departments or
areas of interest. PC is a complex
disease with many areas of interest to its patients. Kind of a silly ananlogy, but follow me, when
you go to a buffet restaurant, it doesn’t mean you eat everything on the buffet
line (perhaps if you weigh 800 lbs). You
simply choose what you want to eat.
So at this forum, members choose what they want to read
and/or participate in, and that not everyone is interested in the same
interests or topics at a given time, and there’s nothing wrong with that
It takes all of our collective input to make it the quality
place of support and information that it is.
I am slowly making the turn in my opinion about over
screening, PSA testing in general. Six
months ago, I would never have admitted this.
Blanket screening doesn’t seem to make a lot of sense to me
anymore. Targeted and tighter screening
would seem to be more productive in my opinion.
I don’t have the answer to this, but my thinking is changing based on
some of the debate on the subject here at HW PC.
I think it’s wise for a person’s opinion to evolve and
change over time, based on the facts of the subject. Not everything is static and dogmatic. Sometimes, like others, I am slow to accept
changes, especially when I thought my mind was made up about something. But hey, I am willing to learn, willing to
change my views to keep up with the latest research. Isn’t that what education all about?
I will stop with these, due to the length, but there are
many more important things that I have learned here at HW PC. These are just my personal opinions and observations;
I am not saying I am right or wrong in these opinions.
It would be interesting what you have learned, whether you be
a long term or a new member. Each person
will pick up different things.
Please remember, in this thread, I am only sharing what I
have personally learned, not trying to make a statement on any of the subjects
David in SC
(edited for minor spell errors)
Post Edited (Purgatory) : 6/12/2013 7:27:09 PM GMT