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Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 5/31/2010 1:34 AM (GMT -6)   
Summary from the InfoLink:
 
Today I met MSK's Peter Scardino, saw a total flip-flop from Otis Brawley, and had a great dinner with Arnon Krongrad.
 
Brawley shocked the masses when in a discussion with Scardino, stated he would randomly suggest a routine PSA test to a 43 year old African American man who came into his office.  This was during a moderated session about prostate cancer screening.  Scardino took the pro-screening position and Brawley, Cheif Medical Direct for the American Cancer Society, took the Con...er...Pro...I mean...well whatever..position...If you don't understand my last sentance, don't worry you won't understand their current guidelines pertaining to prostate cancer either.  I said it before, I believe that the ACS is changing their stance that has hit the media widely, and I believe in political flip-flops...They both can be at play here...
 
I also hooked up with an old friend Skip Lockwood again.  He is the CEO for ZERO - The Project to End Prostate Cancer.  Skip touched on the organizations plans to lobby for more research funding in spite of the threat of decreased spending on cancer research.
 
I had some fun too.  A pharma company called Testro-Pel had a special guest doing a promotion.  Comedian/game show host Ben Bailey did a simulation of his game show Cash Cab.  This program is a game show that has him driving a New York City cab and giving money away for correct trivia answers.  In this simulation, I went 4 for 4...lol...although it's no surprise that Testro-Pel was one of the answers...
 
I also met with the marketing team from sanofi-Aventis.  They have agreed to visit UsTOO chapters across the country to provide oncologists to talk about Taxotere, Eligard, and most importantly Clinical Trials.  I was asked why I declined a clinical trial from sanofi-Aventis and it seemed like a silly question.  I told them that I didn't want to lose measurable control over my own treatment plans and that the trial I was offered required me to forego adjuvant radiation.  I had just learned too much about ART to skip it.  They eventually dropped that study a year ago when they had too little participation.  They reapplied for it with the ART arm and it is still pending today.  Anyway, I need to contact Tom Kirk, Ceo at UsTOO, and help provide a communication path to the chapters...
 
There are three days to go, but tomorrow will be my last.  We fly home after the Prostate Cancer International interviews begin...
 
If you haven't seen past PCai interviews, you can go to youtube to watch them...
 
All in all this has been a great trip.  I have met many of your doctors, and couple of my own.  I have met urologists, clinical oncologists/hematologists, HIFU doctors, Cryo doctors, and radiation doctors alike. 
 
We, the prostate cancer survivors,  are the clear winners.
 
Peace,
 
Tony
 


Disease:
Advanced Prostate Cancer at age 44 (I am 47 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
LARP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino

Post Edited (TC-LasVegas) : 5/31/2010 1:50:03 AM (GMT-6)


rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1131
   Posted 5/31/2010 5:15 AM (GMT -6)   
Interesting. My doc says he is seeing fewer patients and mentioned the new guidelines on PSA testing. He believes people just aren't getting tested. He looked at me and said you know you were a Gleason 8 at age 48. I said yes and I believe in testing early.
 
Age 48 at diagnosis
occupation accountant
PSA increased from 2.6 to 3.5 in one year
biopsy march 2008 - cancer present gleason 7
Robotic Surgery May 9, 2008 - houston, tx
Pathology report -gleason 8, clear margins
22 month  PSA <.04
continent at 10 weeks (no pads!)
ED is still an issue


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 5/31/2010 7:12 AM (GMT -6)   
Good reporting Tony.

The American Cancer Society really better get their stories straight and on the same page, and perhaps their act together too. Until they do, they will still never see a penny from me, or any effort from me, which is a major contrast on my past participation for over a decade.

Glad you are enjoying the event, sounds great.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 5/31/2010 6:00 PM (GMT -6)   
TC-LasVegas said...
...If you don't understand my last sentance, don't worry you won't understand their current guidelines pertaining to prostate cancer either.  I said it before, I believe that the ACS is changing their stance that has hit the media widely...
Hi Tony,
 
Thanks for the updates from AUA 2010...really appreciate it!
 
You might not have realized, but probably it came out in the discussion, that an African-American is higher-risk for PC, so starting PSA testing early is within ACS guidelines.  The mass media has done what they usually do and botched the story in lieu of grabbing headlines...and the ACS is only one of many similar outstanding organizations to suffer from the media's lack of standards.  Oh well, it takes level-headed folks like us who are willing to actually read the guidelines, not just the news story, to make sense of it all.
 
Hope that you enjoyed San Francisco!
 
best regards...

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 6/1/2010 1:24 AM (GMT -6)   
Casey,
It's clearly time that you and I spend time on the phone together... I don't read these ACS guidelines the same way that you do nor does the AUA...I do not wish to spend anymore time just disagreeing with you. Your unending support of the ACS guidelines peaks not only my curiosity but also my counterparts. I open a greenfield opportunity to discuss what the ACS currently states, and what perception is well beyond the press. My email is wide open!

Peace my friend

Tony
Disease:
Advanced Prostate Cancer at age 44 (I am 47 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
LARP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino

Post Edited (TC-LasVegas) : 6/1/2010 1:38:36 AM (GMT-6)


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 6/1/2010 5:29 AM (GMT -6)   
Sorry, I missed it in your latest response...did you already realize that African-Americans were very high risk groups, and so starting PSA testing early is within ACS guidelines?

Your first posting seemed to have feigned surprise that testing was recommmended by ACS in this scenario, so the only discussion we might have is if you think PSA testing is NOT warranted...I didn't think that was your point. Please clarify.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/1/2010 7:47 AM (GMT -6)   
Its been a well known and document fact, that African-American men have a higher percentage of prostate cancer per population, and that fact has nothing to do with the American Cancer Society or their screwy "modified" guidelines. Couldn't imagine anyone one that studies PC that didn't know that.
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 6/1/2010 8:19 AM (GMT -6)   
Purgatory said...
Its been a well known and document fact, that African-American men have a higher percentage of prostate cancer per population, and that fact has nothing to do with the American Cancer Society or their screwy "modified" guidelines. Couldn't imagine anyone one that studies PC that didn't know that.

 
 
I've read the ACS Guidelines.  I thought it would be helpful to post some of the highlights (since news media releases often ignores the meaty details):
 
ACS Guidelines encourages that men in risk categories begin having dialogue about the importance of PSA testing by age 40.  (50 for men of no additional risk).
 
The most important risk categories include African-Americans race and men with PC in non-elderly relatives (under 65).
 
Men should either receive this information directly from their health care providers or be referred to reliable appropriate sources.  The screening decision is made best in partnership with a trusted source of regular care.  For men who choose to be screened after considering the possible benefits and risks, the ACS goes on to say:
  • Screening should be conducted yearly for men whose PSA level is 2.5 ng/mL or greater
  • For men whose PSA is less than 2.5 ng/mL, screening intervals can be extended to every 2 years
  • A PSA level of 4.0 ng/mL or greater historically has been used to recommend referal for further evaluation or biopsy, which remains a reasonable approach for men at average risk for PC
  • For PSA levels between 2.5 and 4.0 ng/mL, health care providers should consider an individualized risk assessment that incorporates other risk factors for PC, particularly for high-grade cancer, that may be used to recommend a biopsy.  Factors that increase the risk of PC include African-American race, family history of PC, increased age, and abnormal DRE. 

hope this helps...

 

 

 

 

 --------------------------------------------

 added later (10:09am) as an edit:

BTW, the ACS Guidelines were created by the ACS Prostate Cancer Advisory Committee, through a consensus process which is documented & described in the document itself.  These individuals or institutions were present on the committee:

University of Virginia School of Medicine, Charlottesville, VA; University of Maryland School of Medicine, Baltimore, MD; Gerald Chodak, MD, Chicago, IL; Dana-Farber Cancer Institute and Professor of Radiation Oncology, Harvard Medical School, Boston, MA;  Fred Hutchinson Cancer Research Center, Seattle, WA; Cabrillo Radiation Oncology Medical Center and Coastal Radiation Oncology Medical Group, Ventura, CA; University of North Carolina School of Medicine and Member, Lineberger Comprehensive Cancer Center, Chapel Hill, NC; Emory University School of Medicine, Atlanta, GA; Hartford Hospital, Hartford, CT; The University of Texas Health Science Center, San Antonio, TX; Thomas Jefferson University Medical College, Philadelphia, PA

Reading some of the Dr Otis Brawley-bashing that takes places, one would think that he personally wrote every word. 

 

Reading

Post Edited (Casey59) : 6/1/2010 9:09:09 AM (GMT-6)


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 6/1/2010 9:31 AM (GMT -6)   
TC-LasVegas said...
...Your unending support of the ACS guidelines peaks not only my curiosity but also my counterparts. I open a greenfield opportunity to discuss what the ACS currently states, and what perception is well beyond the press...
 
Well, my support for ACS is strong, but I do have some concerns which I've also previously written about at this site...
 

I do see that ACS lost ground in the area of screening.  It is very clear that their underlying goal was to reduce the overtreatment of PC, but they lost control of their message.  The media outlets fanned the flames with the sensationalist viewpoint as they typically do to incite emotions and catch the reader’s eye.  The fact is that many men are overtreated, and that’s a darn shame.  When you read their message, you can see that this is what they want to focus on, but their communications team got sucker-punched by the media.

 

Since the late 1980s, when doctors started adding the blood test for PSA, there has been a sharp increase in the number of PC cases being diagnosed.  Prior to the PSA test, patients were commonly diagnosed in late-stages of PC only when palpable evidence was found during the DRE.  In the PSA-era, most new patients diagnosed have early-stage PC. 

 

Compared to most cancers, prostate cancer tends to grow slowly.  It may be decades from the time the earliest cell changes can be detected under a microscope until the cancer gets big enough to begin to cause symptoms.  By the age 50, one-third of American men have microscopic signs of prostate cancer, and by age 75, half to three-quarters of men's prostates will have cancerous changes. Most of these cancers either remain latent, producing no signs or symptoms, or they are so slow-growing, or indolent, that they never become a serious threat to health.  In the pre-PSA era, these cases of PC, which are now detected and often treated, would have gone unnoticed.

 

So, in fact, by far most men diagnosed with PC will NOT have a “raging unstoppable storm” of cancer (phrase copied/pasted from an earlier thread).  And in fact, some men here probably should have never pursued an aggressive treatment.  Most cancers need an aggressive treatment, but most prostate cancers don’t — PC is not the same as other cancers.

 

So, I think that ACS’s message got lost.  They really should have come out with a strong position to treat the cases of PC that need treating, and not treating the cases of PC that don’t need treating.

 

So, again, I think they lost focus in their message.  I mean really...for so many of the misunderstood assumptions to be floating around (follow-up comments made in this thread as one of many examples), ya gotta see that their message got fumbled. 

 

The best thing ACS can do now is to steer their message toward:  treat those with PC that need treating, and don't treat those that don't need treating.  This doesn't mean don't get the PSA test!

 

My crystal ball...I think that ACS’s next step will be to jump on the bandwagon against overtreatment when the upcoming tsunami hits later this year when the Dr Mark Scholz book titled “invasion of the Prostate Snatchers” gets published.


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 6/1/2010 9:47 AM (GMT -6)   
Easy guys...

Let me simplify this discussion. Here is the front page on the ACS website text about prostate cancer...Clearly the 43 year old African American that Brawley would test is pre-testing in these guidelines. There was not even pre-conditions such as family history in the discussion and Scardino suggested testing all African American men at age 40 to which Brawley replied that he WOULD test African American males at age 43. Can someone please tell me where you can discern assumptions that this is within the ACD guidelines from the following text at the ACS website:

www.cancer.org/docroot/ped/content/ped_2_3x_acs_cancer_detection_guidelines_36.asp

Prostate cancer

The American Cancer Society recommends that men make an informed decision with their doctor about whether to be tested for prostate cancer. Research has not yet proven that the potential benefits of testing outweigh the harms of testing and treatment. The American Cancer Society believes that men should not be tested without learning about what we know and don’t know about the risks and possible benefits of testing and treatment.

Starting at age 50, talk to your doctor about the pros and cons of testing so you can decide if testing is the right choice for you. If you are African American or have a father or brother who had prostate cancer before age 65, you should have this talk with your doctor starting at age 45. If you decide to be tested, you should have the PSA blood test with or without a rectal exam. How often you are tested will depend on your PSA level. For more information, please see our document, Prostate Cancer: Early Detection.

In the next document which is linked in the above statement at the ACS website, ACS really sets the confusion free by suggesting that doctors should begin talking to men about prostate cancer screening at age 40, but screening should begin at age 45 only in high risk cases. For an African American male high risk is defined as 45, immediate family history specifically first degree family history that was diagnosed before the age of 65.

www.cancer.org/docroot/CRI/content/CRI_2_6x_Prostate_Cancer_Early_Detection.asp?sitearea=&level=

These are documents at the ACS. So no media to blame for the confusion. The person to blame in the media for the confusion just stated he would randomly test a 43 year old African American male in his office.

Now I can beat this message up on numerous levels. And I won't stop until the ACS fixes this. Here is what I find confusing at the ACS website:

1> Why does the ACS suggest begin talking to the male at age 40, but recommends no testing until they are 45 and only very high risk cases? In this statement it misses the mark by a mile. If a 40 year old white male comes to virtually any PCP doctor in the USA and mentions anything about screening for prostate cancer, the doctor is not going to have this long discussion about it, they are going to click the PSA test, and likely throw on a glove and lube it up regardless of family history. The only thing that can come out of this is the high risk patient won't even ask about it and likely won't get the screening the Dr. Brawley said he would do if it was him.

2> The document also states this:
If, after this discussion, a man is unable to decide if testing is right for him, the screening decision can be made by the health care provider, who should take into account the patient's general health preferences and values.

I am totally against this statement because it sends the message the our doctors should make these decisions for us. It also suggests in the following paragraph that a PSA of less than 2.5ng/ml may only need to be retested in 2 years. What??? Our members here know that testing a 43 yo African American male with a 2.5 is a HIGH reading that should raise a flag.

I can keep going here, but it's a waste of time if it isn't understood that the ACS standards are controversial. What I saw was a chink the armor from Brawley and it was a very positive step in bringing the ACS back in line with the medical community. The press is confused and perhaps overstating things, but I cannot blame the press when reading the guidelines on the ACS website...

Peace.

Tony
Disease:
Advanced Prostate Cancer at age 44 (I am 47 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
LARP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino

Post Edited (TC-LasVegas) : 6/1/2010 1:29:10 PM (GMT-6)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 6/1/2010 9:48 AM (GMT -6)   
Casey I was typing while you responded. Please allow me to review your post. So far I like it.
Disease:
Advanced Prostate Cancer at age 44 (I am 47 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
LARP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 6/1/2010 10:15 AM (GMT -6)   
OK we are in agreement for the most part. ACS has missed the mark, and in my opinion miserably and they are responsible for their own firestorm. For my part I believe the media is just as confused as their message.

I do not think that all prostate cancers are unlike other cancers. The family of Dennis Hopper would disagree with that right now, as would the families of 28,000 men in 2009 in the US alone. The AUA conference showed me where we had less men dying of prostate cancer in 2007 than in 1980. The PSA test is largely responsible as is improvements in treating prostate cancer. But we won't be treating as many cases should the ACS guidelines be the norm and that is a terrible thing. Studies do show us that treating prostate cancer early is the largest reason for the decrease in prostate cancer mortality. We do not have clinical data on mortality for active surveillance but that is coming with the AS fever running high in the US. And certainly confusing the population about prostate cancer will have adverse affects. I believe that men should consider screening and the vast majority of positive diagnosis' should be treated.

Peace...Let's all work together and get the ACS to clean up this mess...

Tony
Disease:
Advanced Prostate Cancer at age 44 (I am 47 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
LARP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino

Post Edited (TC-LasVegas) : 6/1/2010 10:21:44 AM (GMT-6)


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 310
   Posted 6/1/2010 12:07 PM (GMT -6)   

I think Purgatory has put his finger on an important issue:

"This is a support site, patient to patient. None of us our medical professionals, none of us are qualified to give medical advice. It's all about the support."  (Spelling and grammatical errors in original).

Is this purely a "support" site, or is this also a site where we can discuss - and even disagree about - prostate cancer-related issues?

Zen9


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/1/2010 12:14 PM (GMT -6)   
I deleted my 2 posts in response to Casey's original condencending remark to me, which he since edited away from his post. My post simply looked out of place when the original remark is no longer there.

Why is that if I make a remark, that actually agrees with and backs up what Tony's says about the ACS position and statement, I am made to looked like an unread idiot? But if Tony says it, and quotes it, its ok? Talk about double standards.

I still totally agree with Tony's take on the ACS's remarks on screening and "talking" with the doctors. Just not as eloquent in my responses to the same subject. Untrue to what I was accursed of, I have read the entire statement, word for word, many, many times since this all hit the fan.

It is the ACS that shot themselves in the foot, not the media, and not the avearge patient of PC like myself and many others here.

If one is going to play the blame game, then the ACS needs to fess up and correct their own statements and positions.


David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 310
   Posted 6/1/2010 12:35 PM (GMT -6)   

Now I'm really confused:

"This is a support site, patient to patient. None of us our medical professionals, none of us are qualified to give medical advice. It's all about the support."  (Spelling and grammatical errors in original).

"I still totally agree with Tony's take on the ACS's remarks on screening and "talking" with the doctors. Just not as eloquent in my responses to the same subject. Untrue to what I was accursed of, I have read the entire statement, word for word, many, many times since this all hit the fan."

First, I highly doubt that anyone on this board has the ability to put a curse on you.  So I think you can rest easy on that account.  cool

But more importantly, are you saying that permissible postings are limited to (i) emotionally supportive sentiments, and (ii) positions on PC-related issues with which you agree, i.e., one must be PC on PC (politically correct on prostate cancer)?

Zen9


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 6/1/2010 12:36 PM (GMT -6)   
"Community, Information, Resources"

I think the top of this website says it very well. Topics in our forum should relate to prostate cancer. It can be personal or general. If you are concerned about this thread, ask the Admin if it is off-topic. I believe that a personal experience at a convention that was largely about prostate cancer is on topic. I also believe that discussing current news and various guidelines about prostate cancer is on topic and very personal to hundreds of thousands of men. This is a "thriving social network and support community" not just a Q&A about a person's specific needs.

For me I chose to become an active member of the advocacy community to help men get better information about their cancer. I am no longer actively moderating here, though I was asked to help when I can so I kept the tag. If you don't find the information useful, that's ok. Some will be interested some won't be. I do feel that as a prostate cancer survivor that screening is a very important message to deliver. I feel also that any discussion is good and brings light to a subject.

Tony
Disease:
Advanced Prostate Cancer at age 44 (I am 47 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
LARP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/1/2010 12:51 PM (GMT -6)   
Zen, thanks too, for your condescending attitude also, never said anyone "cursed" me, and thanks for bringing up my bad spelling from typing fast - hopefully I can improve that to your standards of perfection. And your conclusions on my opinions? You are wrong on all 3 conclusions about what I believe or feel.

The information segment at HW prostate cancer is excellent: I feel we all have learned much from that. The support section: for the most part has been excellent. The advocacy portion, expecially, but not limited, to Tony, is for all our benefits, and for the generations of brothers that will follow us. Since you read most of my posts, you of all people should know that I push hard for the "agree to disagree" philosophy attitude here. No one person has it all, no one person knows it all, no one person feels it all. It's a group effort, and there is definitely strength in our collective numbers, learning, experiences, and exposure to PC - its treatments and living with it.

Nothing is worse to me than some petty person putting words into someone else's mouth. Quite cowardly to hide behind words online. If you need to clear up any of my opinions or observations on the subject of PC, I will be more than happy to speak for myself, bad grammar and spelling sometimes, but it will be from my heart. Not being said to make someone else feel bad, or posturing for "who is the smartest person at HW" award.

I am just a 4x cancer survivor so far, that has been through a world of hurt and sh**, and I do have both empathy and sympathy for my brothers here that suffer too with PC and life living with PC. Its that simple to me.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 6/1/2010 12:52 PM (GMT -6)   
TC-LasVegas said...
OK we are in agreement for the most part. ACS has missed the mark, and in my opinion miserably and they are responsible for their own firestorm. For my part I believe the media is just as confused as their message.
 
 
Men are getting mixed messages from all over the place (including mixed messages not based in science from contributors to this site, but I am not seeking to make this an issue at this time).
 
I thought InfoLink summary author which you posted, Tony, also recognized this when he wrote:
"...for all the increase in data and information that is meant to be able to help a doctor and his patient make good decisions about treatment, what has actually happened over the past decade is that we may have just made the decisions more difficult for most patients and their doctors — with little actual long-term benefit."
 
 
 
.

Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 310
   Posted 6/1/2010 1:02 PM (GMT -6)   
"I also believe that discussing current news and various guidelines about prostate cancer is on topic and very personal to hundreds of thousands of men. This is a 'thriving social network and support community' not just a Q&A about a person's specific needs." 
 
Now that is something I can understand and with which I completely agree.
 
Thanks, Tony.
 
Zen9 

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/1/2010 1:08 PM (GMT -6)   
Zen, I can't imagine anyone disagreeing with your last post, I would think that all would be on the same page.
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 6/1/2010 1:14 PM (GMT -6)   
Mike, the author in question, and I agreed with this but not at the highest level as we were chatting during some down time. Mike also acknowledges that there is a benefit to screening and that the key is better education for patients and doctors alike. As I stated above less men died of prostate cancer last year than in 1980 but there was a significant population increase over that time. The PSA test is partially responsible. Early treatment is also, but that is directly related to the PSA test. And better treatment is as well, but again treatment only begins after detection.

Good discussion, but let's keep it civil. Together we can help the ACS and other institutional groups with our opinions and perceptions. We don't have to agree with each other everywhere.

Tony
Disease:
Advanced Prostate Cancer at age 44 (I am 47 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
LARP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 6/1/2010 1:40 PM (GMT -6)   
Tony, I'm wondering if there was any dialogue on this topic at the conference...this is sort of a touchy subject, and so I'll choose my wording as carefully as possible. I've read a little on this and tried to "research" this myself, but I haven't come across good data. I'm pretty sure that it's out there (the data), but hard to find. I have (gently) conducted some informal investigation myself here-and-there, but strictly anecdotally.

The theory is that MOST (not ALL; no over-reactions, please) men who die from prostate cancer today in the US did not have any PSA test anytime in their 50's. Many had no PSA test until after they started having symptoms which resulted in an emergency room visit, or when they started having other medical problems (often in their 60's). I have gently asked a number of family members of men who died and found this to be a typical case. [It should be noted that the five year mortality for PC, according to information published in the 2009 Statistical Abstract of the United States, survival for all prostate cancer patients - all risk levels - is 99.4%.]

There is an amazingly high number of poor and uninsured men in this country who simply do not visit the doctor for almost any reason. Many never see a doctor in an office; rather, they only see them in the emergency room...which does not lead to a dialogue about the benefits of PSA testing.

Just wondering if there was AUA discussion on men who "present" in this type of scenario. Thanks in advance.

Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4149
   Posted 6/1/2010 1:48 PM (GMT -6)   
Tony, first of all my thanks to you for keeping us up to date on the activities at the meeting.  Despite the occasional dust up wherin you and I provide entertainment to the rest of the forum (LOL), I sincerely appreciate all that you do with your advocacy....a big THANK YOU for that.
 
Secondly, and with no implication about the grade level of ACS leadership, I think their messages on screening and treatment have been ambiguous at best.  If someone made me king I would probably simplify and change the message to something like this:
 
1.  All men should have routine PSA testing beginning at age 50.
 
2.  Men in high risk categories, e.g. African-American men and men with a family history of prostate cancer should begin routine PSA testing at age 40.
 
3.  There appears to be some overtreatment of early stage prostate cancer.  Therfore, once diagnosed the patient should recognize that not all prostate cancers need aggressive treatment.  Patients should have in-depth treatment discussions with their medical team where all of the treatment options are discussed including active surveillance.
 
Of course I don't see a crown coming my way any time soon and I respect the fact that others may disagree with my take on this.
 
Tudpock (Jim)
Age 62, Gleason 3 + 4 = 7, T1C, PSA 4.2, 2 of 16 cores cancerous, 27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 4/10/10.  6 month PSA 1.4 and now 1 year PSA at 1.0.  My docs are "delighted"!

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/1/2010 1:56 PM (GMT -6)   
Tud, very good opinion, in my opinion.

Your #1 and #2 is what my PCP, my URO, and even my Radiation Oncologisit abide with and advocate to their patients.
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 6/1/2010 2:18 PM (GMT -6)   
You are a good man, Mr. Tud. You really have my fullest respect! i am all for simplicity when it comes to talking about screening for prostate cancer. I can admit this here because I know my wife isn't watching, but we guys as a whole have a short attention span when talking about these things. Simply put, the more complicated a statement is about screening the more likely we will tune it out...

Casey it is safe to say that since most men don't screen for cancers, that most who die of prostate cancer were not screened early. The epidemiology site (seer.cancer.gov) is the best site to review but I wasn't able to locate that specific data in a brief glimpse. There is no doubt that social-economics plays a role in who get proper care and who doesn't. I can't find data as to what percentage of African American males get screened versus the rest of the population. But I bet it's lower. This is why we are holding our free screening event in a largely African American area of Las Vegas. You might want to review the urotoday website. It has detailed information of the AUA summit...

www.urotoday.com

Anyone can join this site, you just have to register...

Tony
Disease:
Advanced Prostate Cancer at age 44 (I am 47 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
LARP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino

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