Making friends wherever I go!!!! more exerpts from the PPML (prostate problems mailing list)
>From:
>Subject: Re: My long lost and overly cross-posted prostate
>MIME-Version: 1.0
>Content-Type: text/plain; charset=us-ascii
>Content-Transfer-Encoding: 7bit
>I will disappear again now, and hold-off on posting anything anywhere
>for a while. I am truly sorry for the waste of bandwidth, and the
>digest space. Going to have a looong chat with Johnny Walker tonite.
Hi Guy, you don't know me from Adam, but I can certainly see why you would be bitter. I have posted a couple of times here and the impression I get is that unless you are fawning up to Stephen Strum, or a rabid proponent of CHB, nobody here really gives a hoot *WHAT* your problem is!
In my defense, the above is not a criticism of Dr. Strum, but rather of an all too predictable group of "followers".
This is also exclusive of a number of rather nice people who have e-mailed me. Great facility for the exchange of ideas, it's a shame the "bandwidth" of some participants is rather narrow.
I wish you all the best....emphatic in Atlanta,
Hubert
*******************************
another of my posts to PPML entitled "half-cocked newbie" (that'd be me!)
Ok, so I was a little too quick to pass judgement. I failed on my first post here several weeks ago to follow the accepted formatting and protocol. Maybe that was why I did not get more of a response, I'll try again!
Hello, I'm Hubert, I have prostate cancer (ala AA) Here's my stats:
Age 42, multiple family history of PCa, not known to me prior to PSA test being done. Minimal symptoms include difficulty in urination, ie; starting, stopping, "incomplete" urination, some pain in right testicle.
12/01/96: PSA 15.2, blood test ordered by my primary care doc without my knowledge, first time it was ever taken.
1/2/97: PSA 14.4, had to change insurance companies per my employer's whim, new primary care, got referral to Uro.
1/9/97: Uro did DRE, questioned why someone as young as I would be seeing him. Said prostate felt "firm", no other comment. No palpable tumor
1/14/97: Had ultrasound needle biopsy performed, 4 cores taken, 1 core (apex)100% involvement, moderately differentiated, gleason 3+4 (combined-7), 1 core (mid)75% involvement moderately differentiated, gleason 3+3 (combined-6), 1 core "minute focus" all of above showing adenocarcinoma, 1 core benign tissue
1/17/97: "bone scan" negative
According to Dr. Strum my staging is T1C
1/21/97: Consultation with Uro, he suggested "seed implants" from Radiotherapy Clinics of Ga. with a pelvic lymph node removal prior to implants.
2/10/97: Pelvic Lymph node surgery performed. biopsy-negative
2/14/97: Severe swelling, pain associated with surgery
2/17/97: staples removed from incision, later that day incision opened up of it's own accord, approx. 1.5 inches x .5 inches wide. Bled freely , Large amounts of semi-coagulated blood, nothing "putrid" indicating infection.
2/18/97: saw the Uro, says wound best left open, have to irrigate several times daily with 50/50 hydrogen peroxide solution. considerable pain, but improving.
2/24/97: scheduled for iodine-125 seed implants, followed by 6 weeks of "conformal beam" irradiation.
Did I do that more or less correctly? I realize I added too many personal comments, but that's just the way I am! I will work on condensing it for future messages.
Reflections....in hindsight the PLND was not necessary, I stood only about a 30 percent chance of it being positive, had it been, I *MIGHT* have considered hormonal therapy. I do not wish to engage others in my personal bias concerning this treatment, suffice to say I do not view it as the "Godsend" many people here do. To each their own!
More reflections. The general state of affairs with this disease is an absolute mess, money squandered on inappropriate diagnostic tools and treatments. Someone PLEASE convince me of the logic of doing a RP on a 70 year old man? Other than that, and the fact that often the best treatment may indeed be *NO TREATMENT* (this was my first gut instinct when I first learned I had PCa) I have no problem with so many people with clear agendas making a mint off of this disease.....trickle down economics being what it is, it's a veritable freaking gold-mine for the budding "professional", just pick a side, sound convinced, and your waiting room will always be flooded with people seeking a "cure".
Ah, but who wants to hear all that anyway, right?<g> (just the facts sir)
Hubert
****************************
From: (private e-mail sent to me from PPML subscriber)
To: Hubert Few <hfew@atl.mindspring.com>
Subject: Re: Half-cocked "newbie"
Hello Hubert,
I send this response with some apprehenson. But, here goes anyway :-)
> Ok, so I was a little too quick to pass judgement. I failed on my first
> post here several weeks ago to follow the accepted formatting and protocol.
> Maybe that was why I did not get more of a response, I'll try again!
Hubert, perhaps you did not get a response because of your "attitude".
It is obvious that you are angry. But, don't take it out on us :-)
*Most* of us on the list have PCa and are as old as your father.
I, for one, do not appreciate being preached at, especially by
a Half-cocked "newbie" :-)
Hubert, there is a developing body of evidence that neoadjuvant CHT
combined with "seeds" and/or XRT is more effective than either
treatment alone.
Jonathan Oppenheimer wrote to you:
> Hormone ablation prior to radiation has indeed been shown to be more
> effective than either treatment alone.
I have sent a copy of this message to Rick Ward, the young PCa
survivor who created the "Seedpods" mailing List. I recommend that
you subscribe to the Seedpods List, *in addition* to the PPML.
I *am not* suggesting that you should go away :-)
But, I *am* suggesting that you probably will get more responses
with a *different* approach.
This E-mail message communications medium is "harsh". If you want
people to read your messages, "tone down your rhetoric" :-)
I have attached to this message, directions on how to subscribe
to Seedpods.
Good luck,
************************
********************************
my reply to "half-cocked newbie" reply from one Dr. Oppenheimer
entitled: "rabid newcomer foams at the mouth" (my choice of subject title)
Dr. Oppenheimer stated:
>While the best strategy for a 70 yr old may indeed be to do nothing, I
>don't see much sense in going this route for a 42 year old. (ASIDE:
>Actually, it would give me a wonderful opportunity to study the natural
>history of the disease. Care to enrole in my observation-only study?).
You know, if I were a single man I'd consider it!!! But that is quite a gamble isn't it? Just for the sake of discussion, what is the going rate for a person who knowingly refuses treatment of PCa? Surely there is some way to get a grant from uncle Sam and write it off? But then, my PL nodes have been pulled, making me a poor candidate, don't you think?
Logically, this option should be presented to some of our prison inmates. PSA testing (I assume) is a relatively inexpensive test. Medicaid, per my understanding, routinely shells out millions of dollars to urologists doing RP's, this with a dubious track record of "cure", and a *definite* impact on the "quality of life" of the individual. the PIVOT study should clear alot of that particular controversy up over time, but where are these people who decline treatment against advice going to come from? Legalities being what they are, I'd *love* to see *that* consent form!
Brrrgggghhhhhh (clearing throat) The bottom line as I see it, the unfortunate truth is nobody gives a rat's patootie about the "over 70" gang, these old geezers with numbered days are perfect "marks" in a very lucrative trade. Who in their right mind is going to refuse treatments when their doc bluntly announces the "C" word???? Line-em-up, slice-em, dice-em, put-em out to pasture with numerous complications and pronounce them cured. Recurrences take time, so it's a pretty slick cash cow.
Do not mistake my cynicism.....I am *OUTRAGED* over this realization, taxpayer money notwithstanding, I am getting just a *taste* of what having your crotch cut open and the underlying pain is like. And I quite fortunately am not (yet) suffering any signs of impotence or incontinence, I'm 42, and while not as good as I once was, I'm as good *once* as I ever was. Where does this weigh in the equation, what's the dollar value of retaining one's testicles, or not having to wear a diaper, or not growing breasts, or not getting osteoporosis, or anemia, or liver damage?
>Hormone ablation prior to radiation has indeed been shown to be more
>effective than either treatment alone.
I guess this is debateable as my oncologist handed me a scientific paper suggesting that hormone ablation pre-radiation (assuming that is what you are talking about) has a negligible effect in improving outcome of RT. I will produce the name, author, etc., next time around. There is no question you will win at this, I am just a "lay-person", a freaking high school graduate for crying out loud, highly intelligent, but grossly under-educated. nolo contendre, hands down, you guys can quote studies and blow my dingy right out of the water I'm sure!
> Being a pathologist, my wallet
>doesn't give a damn what treatment if any you pursue.
Do I sense righteous indignation? I did not accuse you of anything less than exemplary behavior, or any other "professional" on this thread. My ire is directed to the mainstream industry, which you guys seem to be climbing all over one another to convince of the efficacy of certain "experimental" practices. When you get there, will you be any better?
>Yes, I admit that as a physician, I profit from disease and suffering; I try to compensate by reducing them.
And I fault you not for the above statement, I *DO* have a respect for physicians and the various sacrifices in time, money, emotional castration, that you guys have to go through to be good at your trade. The whole issue of "bedside manner" is secondary to me, what is needed is a new governing body to assess one's competency at their particular craft. We as consumers need to *FORCE* this issue now that HMO's are dictating the parameters of treatment, selection process, etc.
blah, blah, blah. One foot on to the bridge over the river 20th century, gazing forelornly at the "promised land". All I really give a shit about is seeing my 8 year old son graduate from college, 14 years is all I ask from anyone, and I plan on getting it one way or the other.
Rhetorically yours,
Hubert
******************************
(Maryann, your post was partially my inspiration for the above mention of the "21st century bridge", are you happy that your comments so successfully stirred my imagination?????) <very large malicious grin> |
