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Am I Cured?


don quixote i
To Dream ... the Impossible Dream
To fight...the Unbeatable Foe
 music and lyrics
In This Issue
Update from the Anderson Proton Center
PSA Test is Reason He's Alive Today
A Call to Action
Why Block a Test That Saves Lives
Our Canadian Brothers Say
AUA Says TF is Doing A Great Disservice
Not All PCas Are Slow Growing
Key Articles We Used to Prepare this Letter
To Run Where the Brave Dare Not Go
Quick Links
For Email Marketing you can trust
"Information about Proton Therapy You Don't Hear in the Gown Room or on the Net"
Dave Steven's talks on prostate cancer, proton therapy and hormone effects will be held on regular rotation for each "class" at the Proton Therapy Center. The next talk will be on Wednesday, November 23rd at 10:00 am in the Proton Therapy Center.   leave a comment for Legionnaire Dave at the discussion site

 

Issue: #42October/2011
Greetings!

On the fresh controversy about screening for prostate cancer -
Will changing the draft recommendations on PSA screening be like tilting windmills? Is the US Preventive Services Task Force (USPSTF) too big to change it's mind? Not if we follow the example of Dulcinea (our sisters in the Susan G. Komen Foundation) and unite. The firestorm they created when this same task force recommended dropping the annual mammograms was very effective. If we unite as one voice we can be as effective as they were. We have many who are supporting the call to arms and asking for comments to help save the PSA screening test. Survivor groups like the ProtonPals and the Brotherhood of the Balloons; along with other nationally renown figures who are prostate cancer survivors or MDs - Mayor Rudy Giuliani, Michael Milken, Dr. William Catalona, Dr. Charles E. Myers, Bob Marckini and Joe Torres. Add to that the response by American Urological Association (AUA), the Prostate Cancer Roundtable , ZEROCancer and US Too in voicing their opinion.

Why the Banner and What is the Don Quixote Award?
First a short story. Over 30 years ago the company(Exxon) I worked for bought a large software package from IBM that was going to do "everything" information systems wise for one of the largest refineries in the U.S. Like a Swiss Army knife it would meet many requirements but it met none of them very well.
 
One day one of our project engineers, we'll call him Jim, called a big meeting between IBM and Exxon to address the project requirements and the deficiencies we were experiencing in early testing. It was a meeting that lasted all day. When IBM wouldn't budge and agree to rewrite major parts of the program, unfortunately Jim lost his cool. The next day,in fun, one of Jim's teammates posted the image above on his door; Jim received the Don Quixote award for tilting large, gigantic entities like IBM with little or no chance of success. 

Facing down our current national administration who appointed this task force and the task force itself is like being in the land of the giant windmills; and to win we must unite but remain rational.

ProtonPal, take up your lance (pens and emails) along with everyone on the 900 man and woman roster! Join the other organizations who are being marshalled to take action. Go to the section below and send your comments to the three major locations listed, the section for public comments, your elected officials and your newspapers.

Please hold this date: On Wednesday, November 23rd, Dave Stevens will give a talk, "Information about proton therapy you don't hear about in the gown room or on the Internet."  Refreshments will be served.

Best regards,
Joe Landry

 
Not So Fast, Doctors and Survivors Tell Panel About PSA Recommendations
 What About the Aggressive Kind?  

A recent statement from the U.S. Preventive Services Task Force, an independent panel commissioned by the national government, touched off fresh controversy about screening for prostate cancer with the PSA (prostate specific antigen) blood test.

 

Saying research doesn't show clearly that PSA screening helps save lives, the group recommended that routine tests are not necessary for healthy men. MD Anderson guidelines call for annual PSA tests after 50, or after 45 for African-American men and men with a close relative with prostate cancer.

 

Doctors, survivors disagree with findings

 

But many men whose lives have been saved by finding prostate cancer early disagree with the panel's recommendations. Physicians, too, are lining up to defend PSA screening, citing statistics that show fatalities have dropped 40 percent since the tests came into use almost 20 years ago.  

Dr. Andrew K. Lee, medical director for the Proton Therapy Center and associate professor of Radiation Oncology at MD Anderson, believes the task force's conclusion is premature. He encourages men to be screened, especially if they're at a high risk.  

"It's a personal decision, of course," he says. "But it's a good idea to talk to your doctor and educate yourself about the pros and cons of the test - and prostate cancer in general."

 

Further discussion is certain


Advocates of testing say the studies examined were flawed and should not be used to make recommendations that could impact the lives of so many.

 "Remember, the
PSA is just a blood test," Lee says. "It does not make the diagnosis by itself, but it is a valuable tool for early detection."


Stay tuned. The period for public comment ends soon, and there's sure to be more discussion in the media.

- MD Anderson Proton Center Staff October 2011 

 

Rudy Rips 'prostate test' Panel a New One
The Reason He's Alive Today

Prostate-cancer survivor Rudy Giuliani yesterday blasted a government-backed panel's advice to abandon routine  

prostate screening, joining a chorus of MDs decry42 Treatments and Cureding the recommendation as shoddy and dangerous.   

"The [prostate-specific antigen] test saved my life," Giuliani told The Post, noting he was in "perfect health" when he was tested at age 56. "I believe it's the reason I'm alive. It's really a mistake to move away from this. It's very dangerous[ to abandon the test].''

 

The US Preventive Services Task Force said the use of PSA testing for the No. 2 cancer killer causes more harm than good, kicking up a firestorm that rivaled its controversial 2009 recommendation that doctors scale back on routine mammograms.

Read more: 
New York Post 
Help Save the PSA Test
We Strongly Encourage You To Comment calltoaction

 

The period for public comment on the USPSTF recommendations is now open and will be for the next week until November 8th. We strongly encourage you to comment on the recommendation, write to your elected officials and submit letters to the editor at your local newspaper. Make sure your voice is heard and help us protect the PSA test!

 

We've made it easy for you to comment and write. The links below has very helpful tools and all you need is your zip code. The "letter to your elected officials" will locate your representative and senators and will address and ship the email to them. You only have to compose the letter or clip, paste and edit from the sample.

Provide public comments to the USPSTF draft recommendations here . 

  
   See Dr. Catalona's comments you can use as a   reference to do this Click here. 

 

Write a letter to your elected officials here.   


    Here's a sample letter I wrote  

  

Submit a letter to the Editor of your local newspaper here.     

    Here's a letter I wrote to the Houston Chronicle.

 

Why Block a Cancer Test that Saves Lives
Local Attorney and Lupron Legionnaire Asks, "What about the Facts?"
The US Preventive Services Task Force (USPSTF) Draft Recommendation Statement of October 8, 2011 recommends against PSA-based screening for prostate cancer in all age groups, even though measurement of serum prostate specific antigen (PSA), a biomarker for prostate cancer, has proved itself useful for the detection of early prostate cancer for the nearly 25 years the PSA test has been widely used in this country. Some of us wonder how this Task Force could recommend that men ignore PSA testing.

The surprising answer is revealed from a review of the Task Force draft and the medical literature it cites. But first, you need to know that just in the past two years, three randomized prospective studies have been reported on the use of the PSA test: The American study of about 75,000 men, a 7 country European study of about 180,000 men, and a study in Goeteborg, Sweden of about 20,000 men. The Swedish study found that after 14 years from the date the men were screened, prostate cancer deaths were cut almost in half. The European study found that after only 9 years from the screening date, prostate cancer deaths were cut by 20%. By contrast, the American study found that after 7 - 10 years of follow up, the rate of death from prostate cancer did not differ significantly between the PSA group and the non-PSA group.
Which study do you think the Task Force relied on? You're right if you guessed the American study. What is so amazing is that the American study is so flawed. Let's take a minute and see how:
  • In the American study, substantial numbers of both the control arm (i.e., the non-PSA screened) group and the intervention arm (the PSA screened group) underwent PSA screening. If you're comparing PSA screening with no PSA screening, all of the men in one of the 2 groups are screened and none of the men in the other group are screened, right? Well, that's not what happened in the American study. Instead, the American study compared one group of men where 52% had PSA screening while 85% of the other group had PSA screening. When you have 52% of the non-PSA group taking the test, you have what is called "contamination" of the control group. By contrast, the Swedish study had only 3% contamination and the European study had only 20% contamination. No wonder the results of the PSA test in the American study were so poor, compared to the Swedish study and the European study.
  • Follow up biopsy rates on patients with positive PSA readings were low in the American study (40%), compared to the 90% biopsy rate in the European study and 93% in the Swedish study. Unless you follow up a positive PSA test with a biopsy, you can't begin to tell whether the PSA test actually reveals prostate cancer or not. Yet the American study follow ups were half-hearted at best, compared to the European and Swedish studies.
  • The follow up times in the American study were way too short, compared especially to the Swedish study. The follow up time in the American study in which the death rates were measured from the date of the PSA test was only 7-10 years in the American study, compared to 14 years in the Swedish study (and only 9 years in the European study). Medical studies demonstrate that you can use the PSA test and a biopsy to find out whether you have cancer or not many years before the cancer actually shows up from a DRE or other symptoms. In this way, the PSA test enables early detection of prostate cancer by many years, compared to not taking it. In one well-known study, the PSA test advanced prostate cancer diagnoses by as much as 12 to 14 years among men aged 55, and by 5 to 6 years for men aged 75. Seven to ten years in the American study is not nearly long enough to compare death rates with PSA and death rates without the test. Because the Swedish study measured the death rates 14 years after the PSA tests were taken, by then there were many more men without the test showing up with prostate cancer. The Swedish study was a fair test of PSA screening, while the American study was not.
Despite these and other flaws in the American study, that study is the foundation of the Task Force recommendation. The Task Force never seriously addressed the findings of either the Swedish or the European studies.

In conclusion, it's easy to understand why Patrick Walsh, M.D., University Distinguished Service Professor of Urology, Johns Hopkins Medical Institutions has this to say about the Task Force recommendation: "If you are the kind of person who doesn't wear a seat belt nor goes regularly to the dentist or your family doctor for a check-up and are not worried about dying from prostate cancer, do not undergo PSA testing. On the other hand if you are a healthy man age 55-69 who does not want to die from prostate cancer, the [European trials provide] conclusive evidence that PSA testing can save your life."
- Dave Stevens, Houston, October 2011

 

Comments from our Canadian Friends
Lack of Information Can be Fatal

The Prostate Cancer Canada Network (PCCN) came out with a position about 2 years ago when the first debate on PSA screening were published and it has not changed. In a recent update to their position PCCN added, The PSA Debate, Again, a Calgary based philanthropist and entrepreneur, PCCN panelist, Brett Wilson wrote that the USPSTF is making a "tremendous mistake" and is dismissing the the lives of men like him, as statistically insignificant.

They also added two letters from physicians who are prostate cancer survivors.

PHYSICIANS WHO ARE ALSO PROSTATE CANCER SURVIVORS WEIGH IN

I was diagnosed at age 59 after a three-year continuous rise in my PSA. I was staged at T2B. I am currently 73. My father died of disseminated prostatic adenocarcinoma, diagnosed at age 67 by digital rectal exam-the PSA test was just a hoped for improvement in diagnostic tools that did not yet exist.

I suppose the ostrich school that if you don't know the disease-lesion is present you won't have to worry about treating it has some merit, but I for one don't see it. PSA is just another diagnostic modality that has to be used with good judgment. If one doesn't know that prostatic carcinoma is a possibility how can one possibly treat it at a time cure can be achieved? Eventually a better test will emerge and the PSA can be abandoned but, at this time, it does not exist. Depriving knowledgeable physicians of a functional tool until something better is available is a fool's errand.
Roger Sopher, Physician, Lancaster, PA

An elevated routine PSA, rising in a few weeks from 6 to 10, with no symptoms, led to the discovery six years ago of my Gleason 7 prostate carcinoma, so that timely treatment with radiotherapy was made possible. There was a chemical recurrence three years ago, responsive to Lupron, so that I remain entirely well and active at age 87.
Neil Watters, Physician, Toronto, ON  
Prostate Cancer Canada Network
What the USPSTF is Doing
AUA

"A Great Disservice to Men World Wide"
The American Urological Association(AUA) responds to the draft USPSTF recommendations by writing.

"The AUA is currently preparing a new clinical guideline on the topic of prostate cancer diagnostics and has convened a panel of experts to review not only the use of the PSA test but also early detection of prostate cancer overall, taking into account the new tests and diagnostics that are becoming available. Until there is a better wide spread test for this potentially devastating disease, the USPSTF - by disparaging the test - is doing a great disservice to the men worldwide who may benefit from the PSA test. "
 
Two Types of Prostate Cancer
Task Forces Ignores Highly Lethal Form
From Ask Dr. Myers Video: - Unfortunately prostate cancer is complex and has many different types. Like lung cancer it can be classed at a high level in two forms non-aggressive and aggressive.
 

1) On one extreme there's one form that is very common, very slow growing that doesn't spread beyond the gland. It's about as common as gray hair and part of normal male aging. If left alone it will not cause any medical problem and typically will not present any symptoms so it doesn't need to be diagnosed and treated.


2) On the other extreme is the less common form of the disease. It is aggressive, relentlessly growing and will kill if you don't get rid of it. Prostate cancer is the "Terminator" using the name in one of Arnold's movies. It will kill you.  

Task force has decided to focus on the more common slow growing, indolent and to ignore the aggressive form. They did this for the common good, and in the process has ignored a highly lethal form of prostate cancer that causes 25,000 to 35,000 deaths.  

 

You can read the transcript of the entire video ProtonPals Post here and view the video here Prostate Cancer Screening.

 

Key Writings on the Screening Flap
Collected Articles that Were Supportive of Screening

We came upon several articles supporting the position of not dropping the PSA Screening test by typing is as Class D. Many doctors and survivors are for keeping it in the diagnostic tool kit until guidelines from the AUA are published.These were the one I used as resource material.
  • Letter to the Editor at the Houston Chronicle.
    Read more.  
  • Death by Bureaucracy by Newt Gingrich -He reviews how the panel is a handful of government bureaucrats with no expertise in the matter issuing recommendations that will have fewer people having the information they need in order to make a decsion on how to be treated.
    Read more.       
  • "The task force's recommendation will ultimately do more harm than good"  An article written by Charles Bankhead, Staff Writer for MedPage Today covering American Urological Association response.
    Read more.
        
  • "PSA is the best screening test for prostate cancer, and until there is a replacement for PSA, it would be unconscionable to stop it from being used."  Press Release by William Catalona, M.D.
    Read more.   
  • "The mortality from prostate cancer has decreased coincident with the use of PSA Screening."Certain facts are irrefutable by Alan Wein, M.D. Chief of Urology at University of Pennsylvania. 
    Read more.   
  • A questioned asked of Dr. Myers. "Prostate cancer runs in my husband's family on both sides:  When should our sons (34 and 28) start getting their PSA checked?" and answered by Dr. Charles "Snuffy" Myers.
    Read more.      
  •  "Rationing Begins" Both Aetna and Kaiser Permanente said it was unclear whether they would continue paying for the test, "We are currently reviewing the USPSTF's recent announcement on prostate cancer screening.  A post from the Texas Public Policy Foundation.
    Read more.   

 
To Reach...The Unreachable Star
lyricsLyrics to Impossible Dream

 Click to hear the song on YouTubeView our videos on YouTube

To dream ... the impossible dream ...
To fight ... the unbeatable foe ...
To bear ... with unbearable sorrow ...
To run ... where the brave dare not go ...
To right ... the unrightable wrong ...
To love ... pure and chaste from afar ...
To try ... when your arms are too weary ...
To reach ... the unreachable star ...
 
This is my quest, to follow that star ... 
No matter how hopeless, no matter how far ... 
To fight for the right, without question or pause ... 
To be willing to march into Hell, for a Heavenly cause ... 

And I know if I'll only be true, to this glorious quest, 
That my heart will lie will lie peaceful and calm, 
when I'm laid to my rest ... 
And the world will be better for this: 
That one man, scorned and covered with scars, 
Still strove, with his last ounce of courage, 
To reach ... the unreachable star ...

 

About the ProtonPals Organization
Thanks for subscribing  to the newsletter and using the ProtonPals website. We won't sell or give your addresses to anyone. You'll receive one or at most two mailings a month from us. If you're a new subscriber you may want to note that the past newsletters are archived back to May 2009. 

We're a group who chose proton beam therapy to cure their cancer and were treated at University of Texas M.D. Anderson Proton Therapy Center in Houston, Texas. The "Pals" formed a network in order to:

  • Stay up to date with treatment cure results
  • Provide support to others and Center activities
  • Be informed on any side- effects
  • Promote proton radiation since it's widely regarded to have a significant advantage over conventional x-rays.
  • Attract and nurture more Pals who support our cause, patient-to-patient and friend-to-friend

  • Support ProtonPals by letting us know how you're doing. That is so important to newly diagnosed men and their wives and partners.  As a former patient we'd all welcome your help in getting the word out about proton radiation and how you're doing. Please donate using the Donate Icon below or mail a check made out to ProtonPals, Ltd.(we're a tax deductible non-profit) at my home address.  Read more about about it on the website How to Help - Giving

     

     

    Sincerely,

     


    Joe Landry, Founder
    ProtonPals, Ltd.
    ProtonPals, Ltd. is a 501 (c) (3) public charity incorporated in Texas.