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Last week when I posted these, I mentioned that the poll I had conducted showed that what interested newly diagnosed men the most was the long term outcome of the various treatments. I suggested that some of the ‘old hands’ on the Lists where I posted might ike to tell their stories to meet this need.
That message went out to over 2,000 readers. Of course not all of the readers were diagnosed years ago, but many were. And do you know how many answered the call? You’ll see from the stories below, but the answer is ZERO.
The so-called Project To End Prostate Cancer is titled ZERO. I thought it was a daft name when I read that, but maybe it reflects how much effort most men are prepared to put in!
I’m not knocking the men and women who work very hard in raising funds and awareness, but……there are over a million men in the US alone who are alive after a prostate cancer diagnosis. Just how many bother – very close to ZERO, I’d say.
NEW POSTS:
PHIL KATZ - has decided on IGRT (Image Guided Radiation Therapy)
CARL SCHUETTE newly diagnosed with T4 GS 8 tumour – chose ADT (Androgen Deprivation Therapy) and adjuvant EBRT (External Beam Radiation Therapy)
PAUL BIRDSONG newly diagnosed and undecided but leaning towards RALP (Robotic Assisted Laparoscopic Prostatectomy)
LEROY WILHITE newly diagnosed and just starting to collect information
DAMON BUTLER newly diagnosed and undecided but leaning towards Proton Beam
DEAN BUCK newly diagnosed and has chosen Proton Beam at Jacksonville
JIM STEELE - has decided on surgery this month or next
UPDATES FROM MEMBERS
LARRY CARL - recounts his side effects in the first eight weeks of ADT (Androgen Deprivation Therapy) after failed surgery
MICHAEL SCOTT – four years after his surgery he is divorced and feeling great
BERNIE HOTH PSA still undetectable after RALP (Robotic Assisted Laparoscopic Prostatectomy)and bi-mix works for him
ANDREW SIKES – has diverted from RALP (Robotic Assisted Laparoscopic Prostatectomy) to Active Surveillance
FRANK XG - PSA has continued to drop following IMRT (Intensity Modulated Radiation Therapy)
WENDELL JEFFRIES - has hit a PSA of 0.04 following his EBRT (External Beam Radiation Therapy) and ADT (Androgen Deprivation Therapy) after failed surgery
PAUL S - PSA has dropped a little to 285. on Casodex, now adding Zoladex
FRED WEINBERG four years after his surgery and he says all is well – no incontinence; no ED; no PSA
Hi Terry,
I understand your frustration with such a poor response to your request for information from readers contacted. No doubt the excerise could have yielded valuable information regarding long term outcomes. But perhaps the no response may not be attributed to indifference, but rather perhaps anxiety, out of reliving a none too pleasant time in one's life.
When I posted my own story, I did so on the basis that perhaps it may be valuable to readers in the future, confronted with similar circumstances. But like you I tend to be fairly succinct in relating the medical aspects of my own case history. I know some posters go to great length's to report on how PCa has affected them personally and their families as well. Whilst I tend to gloss over such postings. others may find them very valuable. I guess it is just a matter of one's perception. To my suprise, several person's that I referred to YANA as an information gathering exercise upon receiving a PCa diagnosis, have expressed a sense of discomfort, at reading the contents contained therein. The general prevailing view being, "I will just leave it up to the doctors", pretty much a Que Sera Sera approach. I can but wonder, at the number's of men being proactive, in their PCa journey, but I doubt it would be a significant minority.
So Terry that said, I guess whilst lauding the relative merits in your endeavor, in hindsight, it may have turned out to be an exercise in futility. Now I ask you, who in their right mind would want to be a researcher????
Hmmmmm, John. Who knows what motivates folk - or indeed what they are looking for - that's what makes designing and running a website so difficult.
I don't know if the story of The Little Red Hen is still one that is generally known - it was a Little Golden Book in my and our son's youth.
The story tells the tale of the Little Red Hen who seeks help as she labours in the field, planting wheat seed, weeding the field, harvesting the crop, grinding the wheat, baking the bread. At each stage of the proceedings she asks for help, but everyone is too busy - the only time anyone has any spare time is when the bread is ready to eat!
When we first mooted the idea this site about 10 years ago, there were about 18 people who enthusiastically offered advice on how it should look, what it should contain, what it should achieve. The decision was taken to go ahead and the work - and cost of $30 a head for the software - was divvied up among the 18 people. In terms of the little red hen syndrome, only one couple - the MORRISONS- put up their hand and between the three of us we did all the work. The rest of the folk were never heard of again.
I believe the lack of responses is plain and simple little red hen syndrome at work again and is fairly typical of the way men generally go about responding to calls to get involved with prostate cancer projects - they ignore them.
I am 2 years after IMRT. I cannot comment on long term effects yet, but would be glad to later. I am unclear what the difference is with the updates method and the data you are looking for. I will be in any projects I am asked to.
the little red hen story is pretty correct.the adelaide pc awareness comitte consists mainly of a small group pc survivors ,most retired and long serving members .very few new faces attend were are the rest that get treated every day ?
