Don't kill the messenger!

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Tony Crispino
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Date Joined Dec 2006
Total Posts : 8128
   Posted 9/13/2010 3:07 PM (GMT -6)   
We are seeing healthy debate here (for the most part) about active surveillance. There are many ways to argue about it, but there is also discussion about screening. I have a very strong bias on the subject as it pertains to screening. In some arguments around the internet the PSA test itself is the center of discussion. My friend has done a heck of a job on this post at the prostate cancer InfoLink. Have a look:

tinyurl.com/38metzg

It get's right down to what is primarily wrong with screening the population based men. I named this post "Don't kill the messenger" to put light on my principle that screening is a good thing. It is information. We need to get the word out during prostate cancer awareness month that screening via the PSA test is just information. That's it. It's not the ugly picture of men peeing down the hallway with permanently flaccid body parts. It's about the opportunity to get data that we can use to take care of ourselves in a reasonable way.

Misuse of the PSA data is definitely real. We need to educate men that the PSa screen is not a bad idea, that having low grade prostate cancer is only a low risk, and that even a positive diagnosis doesn't mean treatment for many. It would be my dream that if I can get one thing out of my efforts for prostate cancer awareness month it's that we all here can agree to do our part to educate the ones who need it most...our own family, circle of friends, co-workers..etc.

Tony

Post Edited (TC-LasVegas) : 9/13/2010 2:18:05 PM (GMT-6)


Steve n Dallas
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Date Joined Mar 2008
Total Posts : 4834
   Posted 9/13/2010 3:43 PM (GMT -6)   
Well said.

Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4183
   Posted 9/13/2010 4:02 PM (GMT -6)   
Tony, in this case my bias is exactly the same as yours.  I believe that screening IS important and that the PSA test is a valuable tool.  I think every man is entitled to have the information and the challenge is what to do with that information.  In another link you differentiated between the approachs of Drs. Scholz and Brawley and I think that was an important distinction.  Dr. Brawley believes that the way to stop overtreating PCa is to deny the info to patients.  Dr. Scholz and others (evidently including you and me) believe that a patient should get the info first, then get educated re how to use it.
 
Thanks for posting this.  I have personally been very open with friends, acquaintances and occasional people on the street about my PCa...continually emphasizing their need to get PSA tested.
 
Tudpock (Jim)
Age 62 (64 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Procedure went great, catheter out before I went home, only minor discomfort. Everything continues to function normally as of 9/10/10. 6 month PSA 1.4, 1 year PSA at 1.0. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643

F8
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Date Joined Feb 2010
Total Posts : 3836
   Posted 9/13/2010 4:19 PM (GMT -6)   

while undergoing IGRT this summer the one thing i noted that i was by far the youngest guy receiving treatment.  i met one guy who was in his 80s.  his doctors were aware he had prostate issues for years and his PSA  score was 20.  he had some serious side effects from the treatment including heart problems.  he also had to wear a catheter for weeks.

another old guy i met was a gleason 9 and besides IMRT also began a two year course of lupron.  he was in his mid-70s.

i met another guy in his mids 70s who was receiving the exact same treatment as me -- nine months lupron, BT and IGRT.

as far as i know these guys were aware of the PC for some time and were seen regularly by a urologist.  i'm not sure what went "wrong" for these poor guys.  maybe they lived too long?

F8

Post Edited (F8) : 9/13/2010 3:44:29 PM (GMT-6)


JoeFL
Regular Member


Date Joined Oct 2009
Total Posts : 420
   Posted 9/13/2010 4:25 PM (GMT -6)   
Tony,
 
Keep your powder dry and stick to your guns on this point! Having your PSA tested is one of the easiest things a man can do to monitor this particular form of cancer....which all men are subject to as they age. At least they are then in a position to take some action....or not.  Why anyone would not be willing to have a couple of cc's of blood drawn once per year to check one's PSA level (and the rest of the blood panel for that matter) eludes me. If you/we just convince one man to do this and he finds PC that is sucessfully treated, then all the shots at the "messenger" will be worth it. Regards,
 
Joe
Age 67 PSA 4.5 Biopsy 9/4/09 Bostwick Labs 5 of 8 sections (5 of 11 cores) positive-Gleason 3+3=6 Stage T1
BT on 12/11/09 (84 seeds of Palladium 103) Home same day/no catheter. Some burning, frequency, urgency for 6 weeks. No incontinence, mild ED. Normal activity within 3 days. 25 IGRT sessions ending 3/22/10 - some fatigue until 30 days after last treatment. PSA on 5/26 - 0.1 PSA on 9/1 - 0.1

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 9/13/2010 6:24 PM (GMT -6)   
Tony and Tud, you already know that I am on the same page as you guys on the screening issue. What a person does with that information is a different issue, but with proper and regular screening, each man at least has a level playing field in where they stand with their PSA.

david
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

califguy
Regular Member


Date Joined Sep 2008
Total Posts : 72
   Posted 9/13/2010 11:01 PM (GMT -6)   
TC: Were you in LA at the PCRI conference over the weekend? After attending seninars klike those were make me wonder why you would object to a PSA test. Just getting the test does not mean you have to have some radical treatment. It might mean you can use active surveillance and not need treatment. Or it might mean you don't need one of the radical type procedures.

So stay on the band wagon!
 
One of your web friends
 
Bill
Don't get discouraged!!
CalifGuy
 
Diagnosed Feb 2008  54 years old
3+4=7 gleason
7.5 PSA
4 out of 20 biopsies were cancerous
daVinci Robotic surgery July 24, 2008  Univ of Calif San Francisco Med Center  Dr Peter Carroll
In hospital 2 nights altho I had option of leaving the next day but stayed due to distance home.
Contained in prostate, not spread
Six weeks post surgery PSA less than .01
Five month PSA less than 0.1  Lab did wrong type of PSA test so this test was not as accurate.
Eight Month PSA less than .01  Yeah!!!!
12 Month .01     15 month .01 
Time again Lab lost the current test and will have to redo it.

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 9/13/2010 11:19 PM (GMT -6)   
Hi Bill,
You may have misread my post. I am 100% for education and screening with a PSA test and a DRE. First at the age of 40 for a baseline PSA marker. Then depending either annually or biannually. (every two years). I am for this testing to begin at the age of 35 if there are high risk matters to consider.

The NY Times reported yesterday that a task force for the US Congressional Budget office paid notice that $3billion per year is spent on PSA testing. The way the NY Times reported it was as follows:

"Consider the prostate-specific antigen test, which is widely used to screen men for possible prostate cancer. In an Op-Ed piece in The Times in March, Richard J. Ablin, the doctor who discovered prostate-specific antigen, described the test as “hardly more effective than a coin toss” at distinguishing who is at risk, and lamented that the test’s popularity has led to “a hugely expensive public health disaster.”"

My point about not killing the messenger is this is very negative considerations being done by the Times about the PSA test. And it's not the test that causes treatment any more than spoons cause Oprah to be, how should I say, heavier than she'd like to be.

---

No I did not go to the PCRI this year. That means that I will go next year. i can't see being able to go every year and I really wanted to. Did you go?

Peace

Tony

Fairwind
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Date Joined Jul 2010
Total Posts : 3782
   Posted 9/13/2010 11:29 PM (GMT -6)   
There is a new urine test for PC called the Four Gene Signature Test, it's on the market NOW, Abbott Labs is licensed to do it and it's being done..It was originally developed to be used in conjunction with the PSA test as it can, with 97% certainty, tell if a high PSA reading is caused by cancer or not. The goal was to prevent so many needless biopsies on men who did not have cancer. But it turns out the test can do more..As a stand alone test, it can spot PC very early, much earlier than PSA can..

But wait....This means many MORE men will be diagnosed with PC and the over-treatment problem might get worse, not better.

I am part of a clinical trial using this test procedure to see if perhaps some clues to the cancers GRADE can be determined from the results of this test..They just collect samples (blood and urine) and look for clues and in my case they now have hard pathology to make comparisons..Everybody involved with it is pretty excited...But right now, it is only being used for early detection and verifying the cause of high PSA readings...
Age 68.
PSA at age 55: 3.5, DRE negative. Advice, "Keep an eye on it".
PSA at age 58: 4.5
PSA at age 61: 5.2
PSA at age 64: 7.5, DRE "Abnormal"
PSA at age 65: 8.5, DRE " normal", biopsy, 12 core, negative...
PSA age 66 9.0 DRE "normal", 2ed biopsy, negative, BPH, Proscar
PSA at age 67 4.5 DRE "normal"
PSA at age 68 7.0 third biopsy positive, 4 out of 12, G6,7, 9
RRP performed Sept 3 2010

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 9/13/2010 11:53 PM (GMT -6)   
Fairwind,
The 4-Gene biomarker is made by Health Discovery Corporation and licensed to Abbott. I will have an Abbott representative at our meeting on Thursday and I will ask her where things are with this. It is not ready for general use and I am not certain what the roadblocks are.

There still is no test that can accurately define aggressive versus non-aggressive prostate cancer. That I know is true...But if it can help improve the PSA test, then I am all for it...

Tony
Disease:
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
RALP ~ 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

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3782
   Posted 9/14/2010 12:19 AM (GMT -6)   
Hey Vegas, that's GREAT!! Get the straight word right from an Abbott rep! A fellow on another board has had the test as part of his diagnosis..

http://www.cancerforums.net/threads/14245-New-Early-Detection-Test..

www.cancerforums.net/threads/14245-New-Early-Detection-Test..

I trying for a live link...Nope, I don't have the magic..

Post Edited (Fairwind) : 9/13/2010 11:30:25 PM (GMT-6)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 9/14/2010 12:22 AM (GMT -6)   
I just activated that link for you. Go to modify the post and look how I did it... Activating links works the same way on both boards...

Tony

Fairwind
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Date Joined Jul 2010
Total Posts : 3782
   Posted 9/14/2010 12:31 AM (GMT -6)   

Casey59
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Date Joined Sep 2009
Total Posts : 3172
   Posted 9/14/2010 10:19 AM (GMT -6)   

Saw your posting, Fairwind, about the company which developed the “Four Gene Test”; in your post at Cancer Fourms you wrote:

 

They are a penny stock, (.20) symbol HDVY They have a website,
http://healthdiscoverycorp.com/

 

Readers here have lately been besieged by dialogue about the “business” of PC treatment, and even the “business” of Active Surveillance.  Don’t think for a moment that PC screening also isn’t about “business” for the same reasons.

 

Surprised, or even pleased, to hear that a marketing rep from Abbott is willing to come to a “grassroots” men’s group such as USToo?  Don’t be.  Abbott is simply doing what is know as “cause-related marketing” or even more gratuitously as “passion branding.”  Dirty secret?  Some think so.

 

Would you be surprised that many of the grassroots groups campaigning passionately for PSA testing are funded largely by the drug companies which supply the tests?  USToo, known as a lay, grass-roots, independent, patient-focused charitable organization caught a lot of flak when it was revealed that 95% of the group’s tax deductable funding came from the pharmaceutical industry (Abbott included; check the USToo website for Corporate Sponsors). 

 

The fact that certain “grassroots” organizations have heavy funding from “big pharma” may come as a surprise to much of the public, which has faith in the independence of non-profit organizations.  An investigation by the Attorney General found that buying trust is a key goal for drug companies that sponsor non-profit groups through stealth “passion branding” campaigns.

 

Right or wrong?  I’m not offering an opinion.  It’s the way it is.


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 9/14/2010 12:39 PM (GMT -6)   
Casey,
You may have misread why Abbott attends our meeting. They are not allowed to present and they are doing market research. They also attend the Susan G Komen meetings, the diabetes meetings and many many more support group meetings including the ACS events, they do not contribute to our chapter at all. I would not take a donation from them.

Again, our UsTOO Las Vegas chapter does not get a red cent from UsTOO International or "big Pharma". We are 100% self supporting with voluntary donations from our members. Our group is also 100% volunteer. We have less than a grand in our treasury and seldom need it to be any higher than that and when it is we try to send a donation to the UsTOO International group or hold an awareness event. My volunteer job as President is to find speakers and conduct meetings. We don't get any help from Chicago to do any of that. When Abbott, Sanofi-aventis, or whoever comes to our meetings, they typically sit in the back and take notes. I do ask questions privately and never have a representative presenting. Keep in mind we are our own 501c(3). 100% of our funding goes to patient support and education.

By comparison, the ACS office out here has run into issues with 80-90% of it's revenue generated being used for operating expenses. That has improved, but still remains an issue across many locations.

ACS nationally is a 2 billion dollar organization that has over 1 billion in operating expenses, and 700mil for research, prevention, detection, and patient support:

2008 Financial Statement: www5.cancer.org/downloads/AA/ACS_Combined_Financials_FY2009.pdf

No glass houses please!

Tony

Post Edited (TC-LasVegas) : 9/14/2010 11:45:02 AM (GMT-6)


Casey59
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Date Joined Sep 2009
Total Posts : 3172
   Posted 9/14/2010 12:48 PM (GMT -6)   
Thank you, Tony, for clarifying.

In my earlier post, everywhere I wrote "USToo", I should have written "USToo International."
 
 
 
 
As I said, I'm not offering an opinion.  [Please don't assume too much.]  It's just the way it is...but many people don't realize when marketing people are doing their jobs...

Post Edited (Casey59) : 9/14/2010 12:01:43 PM (GMT-6)


Tony Crispino
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Date Joined Dec 2006
Total Posts : 8128
   Posted 9/14/2010 1:21 PM (GMT -6)   
It is regrettable that UsTOO International doesn't receive enough from the ACS to be able to print documents and brochures and cover operating expenses. Dr. Brawley wants better education for prostate cancer patients and it might help if for every dollar donated to the ACS a bit more than .5% went to prostate cancer research, education, support.

Keep in mind I am not critical of the way ACS runs it's show it is a great organization. But I certainly hope they are not casting stones at the grassroots efforts that don't have the ACS resources. Because the ACS has more money in pensions than UsTOO International, PCF and Zero, PCRI have in gross revenue ~ combined with better than 50% left over. I am not certain how many people would send them a buck if they knew .35c was going to the cause. And for prostate cancer less than a half a cent?

I would LOVE to see a rep from the ACS accept my invitation to attend an UsTOO Las Vegas meeting! I would dedicate a whole meeting to them...

Tony

Casey59
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Date Joined Sep 2009
Total Posts : 3172
   Posted 9/14/2010 1:46 PM (GMT -6)   
TC-LasVegas said...
But I certainly hope they are not casting stones at the grassroots efforts that don't have the ACS resources.

 

 

Hey Tony,

 

Honestly, I'm not sure how ACS got into this conversation...but to the best of my knowledge, they were neither directly nor indirectly involved in the news piece regarding USToo International funding, nor were they mentioned anywhere in the article.

 

The main intent of my posting (as I said) was an expanded understanding of what "the business of PC" means...with USToo International as an illustrative example.  I plucked the information for this posting right out of a news article.  I thought this was an appropriate HW follow-up to the recent expansion from the more narrow scope of dialogue about the surgery & radiation "business" to include the "business of AS."  That was you, wasn't it, who helped make the point that people are making a living off of AS?   Link

 

Also in my posting, I sought to note aloud the related irony of Fairwind's posting of the opportunity for all of us to get in early on the possible financial upside of the "Four Gene Test" product.  Thanks for the tip!

 

 

P.S.    Please don't shoot the messenger.

 

 

Post Edited (Casey59) : 9/14/2010 1:24:26 PM (GMT-6)


Tony Crispino
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Date Joined Dec 2006
Total Posts : 8128
   Posted 9/14/2010 4:35 PM (GMT -6)   
ACS got into the conversation by me doing a comparison. I thought the information you led with directed at UsTOO was either poorly reported or unfairly assessed. UsTOO International started taking corporate sponsorship when the ACS and the US government declined to help them. But there is no quid pro quo, per se. Other than a thank you on the website and in the newsletter.

I brought the ACS into it as a knee jerk reaction and I apologize if you felt it directed at you personally. You are just the messenger...

Tony

Putt
Regular Member


Date Joined Aug 2010
Total Posts : 154
   Posted 9/14/2010 4:54 PM (GMT -6)   
Tony
Off topic just a bit, but I had to add my two cents to you.  A big "Thanks" to you for serving as President at the LV UsTOO Chapter.  It difficult to find men (or women) to fill those important positions that keep the info flowing to those seeking help.  As one who's been there, done that, at our Wichita chapter, I appreciate what you are doing and say thank you..............
Gary
PSA at Dx 105 at age 68, 4/04. ADT, RRP, 5/04. Gleason 4+5=9, Staged pT3c N0 MX, 3D rad, 40 treatments, 8/04. PSA 1/05 <0.01. ADT till 7/07. PSA 0.03 12/08, 0.07 4/09, 0.13 8/09, 0.19 12/09, 0.30 4/10, 8/10 0.71. Will start ADT3 after PSA reaches 1.2.

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 9/14/2010 5:12 PM (GMT -6)   
Gary, thank you very much. I see your name there and you have one of the very best chapters anywhere. I hope to follow the lead. I know you probably know Lew Musgrove, he was my predecessor and he also used to have Tom Kirk's title of CEO UsTOO International.

I have had the pleasure of meeting Chuck Maack. Please give him my very best too. I have met him and spoke to him on occasion and he is a wonderful man. He has joined my UsTOO Las Vegas Facebook page, and if you are interested and use FB, you are also invited:

www.facebook.com/pages/UsTOO-Las-Vegas-Chapter/206932628271?ref=sgm

You do need a FB page to join.

UsTOO Wichita is a great group...Perhaps if little else we can stay in touch and perhaps advise our group on your experiences. My Email is open here.

Tony

Todd1963
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Date Joined Oct 2008
Total Posts : 3218
   Posted 9/14/2010 5:20 PM (GMT -6)   
I vote for screening and I vote for screening at 40 years old.

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 9/14/2010 5:29 PM (GMT -6)   
Geez Todd, you might have wanted to aim for 30.

Call me when you can...

Tony
Disease:
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
RALP ~ 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

rhb47
Regular Member


Date Joined Mar 2010
Total Posts : 208
   Posted 9/14/2010 6:26 PM (GMT -6)   
I vote for screening also and I agree with Todd. My husband was 56 at diagnose and his surgeon told him the cancer was probably there for years. We have 2 sons and I'm going to tell them to get a baseline at 40.

Renee
Husband diagnosed 3/10
Age 56, PSA 4.7, free 7.6%

Biopsy 5 of 10 cores positve-all right side-25% to 57%
Gleason 6
DaVinci surgery with Dr. Vip Patel scheduled 8/9/10

Post Op: Gleason 3+4=7
Negative surgical margins and lymph nodes
No seminal vesicle and angiolymphaic invasion
perineural invasion present
Both nerve bundles spared

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 9/14/2010 8:47 PM (GMT -6)   
As an individual who has had annual PSA testing since I turned 40, I support screening. If I was 45 when my cancer was diagnosed, I would say the screening age should be 40.

However, most of what I read says that 55 may be a more realistic age for annual screenings, based on when screenings seem to find majority of the PC. Perhaps we could screen for the HPC virus which is found in 43 % of the PC, at a young age, and then if negative, spread screenings out at longer intervals until age 55.

If we could take some of the funds not spent on negative screenings and put it towards better, cheaper, easier diagnostic tools, maybe almost like a home pregnancy test from urine, perhaps we could make some progress.
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
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