Quoted from PCa advocate and knowledgable person~Kathy Meade~yananow & facebook sources

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zufus
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Date Joined Dec 2008
Total Posts : 3149
   Posted 7/24/2010 11:46 AM (GMT -6)   
Kathy Meade has been envolved in PCa for many years, find her words made public, to be very interesting, maybe to all of us. So decided to air it out, people can believe whatever they wish as always, questioning things leads to answers.
 
A case for better information

Kathy Meade posted a link on her FaceBook site to a piece that I thought was worth reading at Patient choice: A medical cop-out

Two paragraphs in particular make, I think, important points:

I would like to think that treatment is driven by research, but I’m not convinced of that. If it was, then comparative studies looking at longevity and quality of life would be more vigorously investigated. …… There’s an old Arabic saying, “If you want to know how well the medicine works, don’t ask the doctor, ask the patient.” To paraphrase this wise thought, if the medical community wants to know what’s important to address in prostate cancer research …… involve those of us whose lives have been changed by cancer.

2. Unfortunately, what I find tragic today is that most men facing treatment for prostate cancer are just as confused as I was seven years ago. Asking patients to choose the intervention that will have consequences effecting the quality and length of their lives is often a cop-out for the medical community. Patient involvement doesn’t negate physician responsibility for the decision. Nor should research be confined to the easier, cleaner approaches of studying any form of cancer. Unlike pure research, our lives are messy, so there needs to be a bridge between the two.  I often wonder if anyone in the medical community is listening.


 

 

Post Edited (zufus) : 7/24/2010 11:50:31 AM (GMT-6)


goodlife
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Date Joined May 2009
Total Posts : 2691
   Posted 7/24/2010 12:56 PM (GMT -6)   
In a pure world, she is obviously correct.

In a world with litigation, malpractice, shrinking incomes for doctors, insurance, government intervention, etc., I'm not sure if we can ever expect to go to our family doctor, or the doctor our insurance covers, and get a straight up recdommendation that we can rely on .

So, for many of us, doing our own research, comparing notes with other PC patients, and arriving at our own choice is probably more reliable. Because of that, many of us have chosen our treatment for incorrect assumptions, incorrect expectations, and incorrect results. In the end, according to some, no matter what we do, the outcome will be approximately the same.

It's a crazy world.
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01
15 month PSA <.01


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2222
   Posted 7/24/2010 5:14 PM (GMT -6)   
It can be a catch 22 if the Dr does a certain type of tx. I prefer an opinion, but also want to be told to educate myself and to look at all my options. And that is what I got from my urologist who specialized in open surgery.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed, 61 yo 2010
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
2 pads per day, 1 depends but getting better,
 started ED tx 7/17, slow go
Post op dx of neuropathy
T2C left lateral and left posterior margins involved
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5 on 11/28/10
Starting IMRT on 1/18/10, Completed 39 tx at 70 gys on 3/12/10
6 week Post IMRT PSA .44 a drop from .5 but maybe more
Great family and friends
Michael


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6948
   Posted 7/24/2010 8:00 PM (GMT -6)   
The fact that a specific and precise treatment is not understood and dictated by the doctors simply indicates that not enough attention is paid to PCa by the medical community.
We are not "important enough".

The development of the x-ray changed history.
The impact on workers of Yellow Fever while building the Panama Canal changed history.
The impact on children of polio in the 1950's changed history.
The impact on the population of typhoid changed history.
The impact on men of fast battlefield wound treatment is changing history.
The impact on women of breast cancer is changing history.

We are seen as a bunch of dried up old farts, supposedly beyond reproductive importance, just hanging around taking jobs from the kids. "If you don't die of PCa, you will die with PCa". Why do we accept that BS?

Just a bad day - my equivalent of a vent. Spent the afternoon with vintage Pink Floyd on the stereo.

Post Edited (142) : 7/25/2010 8:28:03 AM (GMT-6)


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 7/25/2010 10:41 AM (GMT -6)   
142- Well maybe venting is good therapy for ones system, otherwise you might reach Defcon-5 and never return as a normal being, again! (LOL)

Goodlife- that was about like brutal honesty as you mentioned it, I can handle those thoughts.

60-michael- I think we all should either be informed and told of, or know all possible options including doing nothing and even less popular protocols (total disclosure that is knowable). Patients are interested in results, choices, options and knowing straight forward truth and being informed of pitfalls, side effects and risks (you would think anyway). You can see things are lacking, so why, is it that truth isn't as profittable and doesn't sell as well?

Interesting replies anyway.
Youth is wasted on the Young-(W.C. Fields)

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