New direction for ACS?

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Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 5/14/2010 8:11 PM (GMT -6)   
As an active advocate in the world of prostate cancer awareness, I have been vocally against the prostate cancer guidelines issued by the American Cancer Society. But something is making me soften this position. For those who don't know the ACS issue new guidelines about prostate cancer screening that were received well by some advocacy groups and loathed by most of them. In these guidelines, the ACS downplayed the effectiveness of prostate cancer screening and and also sent a confusing message about who should undergo screening. While most of those affected by prostate cancer understand their general point, many men were taking the message to mean it does not do any good to screen for prostate cancer. Additionally, it was understood by their announcement that community screenings were not effective or necessary. And I believe that the guidelines leave the decision to screen to doctors and not the individual since they indicate that all men should consult with a physician before screening takes place. The problem I see with this is that not all people can go through the financial exercise to get to that point. And not all men will understand the guidelines even after careful explanation of them. Thus community screening events are a huge resource for those who could use them or simply need them.

My point to the post ~ I have received today a grant from the CDC through the Nevada Department of Health to organize a community screening event for fathers day here in Las Vegas. The grant was significant and made possible by the ACS attorney working with me. The Las Vegas chapter of Us TOO International will host the event. I was approached by the ACS attorney in Carson City to work on an event for the Las Vegas community and to head up the project.

I believe that the ACS is listening and showing signs of reconsideration of the announced guidelines, and also the effectiveness of prostate cancer screening. I am very happy to have worked with a great gentleman from their group who has made this possible. There has yet to be an official announcement from the ACS, but, I believe that is coming.

And so it is. Time to call the TV stations and get the word out...

Tony Crispino
Chapter President
UsTOO Las Vegas
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


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7078
   Posted 5/14/2010 8:29 PM (GMT -6)   
Tony,
I had posted in one of the other threads where you mentioned this - if it were not for random luck and the attention of a good nurse, I would still not know that I had a very serious problem. I might have stopped at a screening at the fair, or the library, but there weren't any.

Keep doing what you are doing.

IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 5/14/2010 8:40 PM (GMT -6)   
Hi Tony,

It is great to hear that you have opened a positive channel of communication with the ACS on this important topic.

I know you'll do a great job heading up the Father's Day event!

Please keep us posted!

All the best,

Barry
Surgery: Da Vinci; July 31, 2007; 54 on surgery day;
Pathology: PSA: 4.3; Gleason: 3+3=6; T2a; Confined to Prostate;
Post RP PSAs: 09/'07 <0.04; 12/'07 <0.04; 03/'08 <0.04;
06/'08 <0.04; 12/'08 <0.04; 06/'09 =0.06; 09/'09 <0.04; 12/'09 =0.05;
Latest PSA 3/'10 <0.04


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 5/14/2010 8:40 PM (GMT -6)   
Tony,

I view what you just posted as a good possible turning point. What you are doing with the grant work is excellent, and really pleases me. Would love to see that spread all across the land, literally. What ever skill sets you used to make this happen is great.

Speaking for myself, I think you are doing a great work.

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 - 4/23 put in


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 5/14/2010 9:05 PM (GMT -6)   
I'm also glad to see ACS throw some $ your way, and not altogether surprised since (as per discussion in your earlier posting) the proposed Father's Day program will adhere to ACS guidelines for "community screening."

What I'm finding is that a lot of people are realizing that the ACS guidelines are not as bad as the mass media (always out for the eye-catching headlines) made it out to be. Lots of people don't read beyond the headlines.

Best wishes for a successful program on Father's Day...

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 5/14/2010 9:42 PM (GMT -6)   
Casey,
The money came from the Center for Disease Control ~ the CDC ~ or the federal government and not from the ACS. It was lobbied for by the ACS attorney for several groups. We received it on our merits, but also with support from the ACS.

It is still my position that the way ACS guidelines are written leave much to be desired, and I hope the media stays on it forcing them the review them. Additionally, the ACS recently did a national distribution on cancer and failed to even list prostate cancer as a major cancer. Don't make any mistake about my position on this, that they need to readdress their position and do a better job explaining their guidelines so that a layman can better understand them. They need to point out clearly that they support prostate cancer screening. Additionally, they need to suggest better alternatives for folks that can't afford proper care. The guidelines are good on principal but they still are not anywhere near the best I have seen.

I have more information but it would be inappropriate for me to post it at this time.

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


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 5/14/2010 9:44 PM (GMT -6)   
Oh, and Casey,
Thank you. I am very much thankful for the support I received from the ACS on this one.

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


Sharp18
Regular Member


Date Joined Mar 2010
Total Posts : 78
   Posted 5/14/2010 9:47 PM (GMT -6)   
Tony,

Thank you for your work you are doing for all of us.

Regards,
Sharp

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2845
   Posted 5/14/2010 9:55 PM (GMT -6)   
Tony - and thanks from us north of the border - the Canadian Cancer Society did a knee-jerk reaction to the ACS posting and as echoed above, and by others, we are grateful - if it wasn't for the PSA test (and my doctor going past his normal routine )- who knows how far my cancer would have spread.
thanks again
BRONSON

p.s. my doctor has now opted to be on salary instead of being paid per patient ( OHIP - Canadian health care system in Ontario), so he can now give his patients the much needed time they need for preventative medicine, counseling and support ...
.................
Age: 54 - gay - with common-law spouse of 13 years, Steve - 60
PSA: 04/2007- 1.68 - 08/2009 - 3.46 - 10/2009 - 3.86
Confirmation of Prostate Cancer: October 16, 2009 - 6 of 12 cancerous samples , Gleason 7 (4+3)
Doctor: Dr. Mohamed Elharram -Urologist / Surgeon - Peterborough Regional Health Centre
Radical Prostatectomy Operation: November 18, 2009 , home - November 21, 2009
Post Surgery Biopsy: pT3a- gleason 7 - extraprostatic extension - perineural invasion - prostate weight - 34.1gm -
ED Prescription: Jan 8/2010 - started daily 5mg cialis - girth back to normal -but not much length - will go for trimix in April when I see doc
Incontinence: Feb 2010- 3-5 pads/1-2 clothes changes/day- March 3, 2010 - week 14 after surgery -finally seeing improvement - March 29- incontinence better - 1-2 pads a day - one pad at night
location: Peteborough, Ontario, Canada
Post Surgery-PSA: - April 8, 2010 - 0.05 - I am in the ZERO CLUB - hooorah!
Next PSA - October 8, 2010 - TBA -
............

Post Edited (tatt2man) : 5/14/2010 8:59:10 PM (GMT-6)


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 5/14/2010 10:18 PM (GMT -6)   
Oops, my mis-read on the fact that the $ came from CSC...anyhow, glad to see the CDC throw some $ your way (with the active support of ACS).

I have also previously written that ACS fumbled on packaging the message...on this we agree. What tweaks me, however, is when I read in various places that "ACS is against PSA testing"...that's just plain ignorant, and I hope that we also agree is NOT what the ACS guideline says (or intends).

Anyhow, enough about that in this thread...keep the focus on your Father's Day event! Good luck! Where are you holding the event? In Las Vegas, but where in the community?

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 5/14/2010 10:48 PM (GMT -6)   
Casey,
The "ACS is against prostate cancer screening" thing is a product of the message. And it is the driving reason that I am on my soapbox. Most men skim the surface of guidelines. So blaming ignorance is too convenient for me. It's true, but the message allows for such things.

Our fathers day screening event will be held in an area just north of downtown Las Vegas. While open to anyone, the area has a high poverty stricken and minority population, including African Americans which we certainly hope to provide the service to as they are in a high risk group. While we have not set the formal location, Catholic Charities has been helpful in the past and their main Las Vegas campus is located in the area.

Screening events are a huge attention getter. And any attention on prostate cancer will help people better understand the disease.

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


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 5/14/2010 10:58 PM (GMT -6)   
I need to also mention that the Nevada Department of Health and Human Services is the grantor. They were funded by the CDC. I am working well and actively with the Nevada Comprehensive Cancer Commission. I look forward to working with them for years and if possible joining their panels.

But again, the State of Nevada is the grantor. The federal government through the CDC provided the grant.

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


deer hunter
Regular Member


Date Joined Jan 2010
Total Posts : 250
   Posted 5/14/2010 11:22 PM (GMT -6)   
Thanks for the work you are doing ,keep it up you are doing great things for the pc world
Going foward!!!!!!!!!!!!!!!!
DEERHUNTER
dx age 57 01/06 open RP 4/06 psa in 01/06 8.1  surgery path report Gleason 3+4=7 poorly differentiated  tumor was 90%involved in both lobes surgical margins postive. in the right apex and right radial margins tumor grade G3  perineural invasion present high grade of PIN found  T2c NX MX PSA 0706  .01 10/06 .02 01/07 .03 04/07 .04  06/07 .05  07/07 .08 07/07 bone scans pelvic ct neg. 08/07 proscintic scan neg.9/07 psa.10 net with rad onc. wanted to do SRT but i did not do it 10/07  saw a new dr at Emory University [my old dr urg. suggested second opinion ]  bone scans negs ct scans pelvics neg. biopies of the bladder and adrinal glands neg.another proscintic scan neg.12/07 Psa .11 clinial trial Emory injected with protons to try and find the cancer cells no luck 3/08 psa .17 06/08 psa .23 psa 09/08 psa .32 12/08 psa .39 3/09 psa .39 6/09 psa .43  meet with medical onc. he said  i might have waited to long to start SRT 7/09 psa .50  another bone scan ct scan all neg.MRI neg. meet rad. psa the last of 7/09was .55 onc. 7/09 started casdex 50mg 1 day for 30 days 2 shots of lupron started rad treament 10/09 40 treatments 75 gm 12 shots each time all aroud pelvic finished 12/09  psa .07 and psa 01/10.05 next dr visit 03/10 wait and see 3/10 psa.05


Hope and Prayer
Regular Member


Date Joined May 2010
Total Posts : 59
   Posted 5/15/2010 2:55 AM (GMT -6)   
Tony-
What you are doing is remarkable! I have recently joined healingwell after my boyfriend was diagnosed with advanced PC at 44 as well (about 6 mos ago). It is unfortunate that screening does not start until 50 y.o. and most men think they are ok until then. Same goies for women and breast cancer screening. Actually, PC at an early age is more detrimental and if found earlier, can eliminate the need for radical surgery, radation, chemotherapy. Within our community, we are very active about spreading the word about early testing; young and old. Would you be able to give us some insight on how to start a drive with funding?

Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 5/15/2010 6:45 AM (GMT -6)   
Tony, on behalf of the women who love men affected by prostate cancer, I thank you (and everyone) who work hard to get the word out. I hope that many men come to the screening - whether voluntarily or kicking and screaming as they're dragged by us women who love them!

Thanks for the news - it is indeed a good sign!
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009 - 0.1, September 0.3, October back to 0.0, December 0.0, March 2010 0.0. Next PSA in 6 months. Thank you God!


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 5/15/2010 8:29 AM (GMT -6)   
When the time comes, post a link here to the RJ article.
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