This article is why the American Cancer Society will never get another dime from me in my lifetime

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Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 10/21/2009 7:35 AM (GMT -6)   
Who is paying off the American Cancer Society?  That is what I want to know.  What are they hoping to gain with this garbage?
How many more men will die because of this thinking from prostate cancer?  Call it over reacting if you wish, but it  ticked the hades out of me.  I use to have the highest support of the ACS, but no more.
 
Read for yourself:
 
 
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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl.agree to start radiation, mapping on 9/21/9, 9/24 - mtg with uro/surg, 9/29- pre-op, 10/1 - 3rd corr. surgery - suprapubic cath/hard dialation, 10/5 - began IMRT SRT - 39 sessions/72 gys.


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 10/21/2009 7:45 AM (GMT -6)   
David, sadly the ACS has become a political entity. Everyone on this board knows the truth about the advantages of early detection. Wouldn't be surprised if the ACS is taking its cue from insurance companies.

As someone whose mother died from breast cancer, I have annual mammograms since I was 39 years of age. My doctor and I agreed that regardless of the guidelines, I will have a mammogram every 12 months. John, too, has become quite vocal with his male friends about getting their PSA checked. He tells them it's the easiest test there is, with no prep involved. Just show up and roll up your sleeve - can't get easier than that.

My half-sister lives in Manchester, England and we were chatting just a few days ago about their health system (which is government-run) vs. ours. Women get a pap test every 3 years - good Lord! PSA tests are not part of routine exams for men - you have to pay "extra" to get this test. That's why England's death rate from PCa is higher than ours, with more men presenting with advanced disease. Mammograms are not covered for women under 50 - my niece here in NY was diagnosed with stage III BC when she was 34 years old. After surgery, chemo, radiation, and reconstructive surgery, she's fine.

Getting on my soapbox here but I'm getting tired of the media and well-respected organizations like the ACS downplaying the importance of regular screening.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (extraprostectic extension in posterior left). Perineural tumor infiltration present. Apex margin, bladder neck and SV negative. Gleason 3+4 (no change from biopsy). PSA results: April 2008 0.1; May 2008 0.0; August 2008 0.0; November 0.0; February 2009 0.0; May 2009 0.0; August 2009 0.1; September 2009 0.3. Met with radiation oncologist and began process for salvage radiation. CT scan and bone scan done on October 8. One spot on bone scan (clavicle) being investigated. Third PSA taken on October 16 - PSA IS UNDETECTABLE! Next PSA scheduled for early December. Urged not to begin radiation treatment until it's needed (no problem there!).


Modelshipwright
Regular Member


Date Joined May 2009
Total Posts : 215
   Posted 10/21/2009 7:51 AM (GMT -6)   
Hello David,

That is quite incredible! I cannot, for the life of me, figure out how less screening will be better. In my case, screening from a PSA test and a digital exam detected something abnormal and a further ultrasound found an area of concern. The biopsy found T1C cancer, Gleason 3+3 in the left half of my prostate. Then the surgery and the real test, the pathology. Not only was the cancer in the left half, but it was found in the right half as well, and an additional tumor was beginning to take form that the pathologist thought might advance quicker than the other two tumors.

Do I think screening works? Absolutely! It saved my life in my opinion and no reports or studies will change my mind on that. It leaves me wondering how the American Cancer Society can even consider that stance.

Keep well,
Regards,
Bill
Pre-Op:
 
Age 64. Diagnosed with Pca January 2009.
PSA 5.6, Gleason 3+3=6, T1c
 
Biopsy:
 
TRUS biopsies of prostate left adenocarcinoma of prostate involving part of 1/4 biopsy fragments, less than 10% of the surface area involved, CT scan clear.
 
Treatment choice:
 
Robotic Assisted Laparoscopic Prostatectomy - September 29/09. 
Pre-op PSA down to 5.28 which I attribute to visualization techniques and a new vegetarian diet.
 
Post-Op:
 
Robotic Prostatectomy - 09/29/09, back home 10/02/09.
 
Pathology - 10/14/09  Gleason Score remained at 3+3 = 6 as it was when originally diagnosed. There were no positive margins. Tumors were found in both lobes and involved 3-5% of the prostate. There was no Seminal Vesicle, Perineural, Lymphovascular or Lymph node involvement, and the bladder neck was also cancer free. 
 
Continence
 
10/16/09 - 3-4 pads a day and working on pelvic floor exercises as prescribed.
 
Potency:
 
10/16/09 - Zip, nada
 
State of mind:
 
Excellent - always positive.
 
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 10/21/2009 8:27 AM (GMT -6)   
Sephie, great speech!!! You captured my feelings. The ACS must be in cohoots with the insurance giants, if you cut back on testing and getting early cancer dx, you can save billions by keeping people in the dark about their health issues, and they can make bigger profits. But at whose expense?

When I was dealing with my other cancer 10 years ago and longer, I use to think that the ACS was gold plated and only looking out for our interests. They been bought and sold on the auction block to the highest bidder.

Bill, without testing, I wouldn't be here writing this, but my body was have a raging giant by now growing by the day, and long gone out of the prostate gland. And for the most part, I probably still wouldn't feel anything. Scary.

I hate thinking in terms of money first when dealing with any health care problem. It should be health first, it should be patients first, and doctors should allow to test and doctor for their patient's best interest. The industry shouldn't be controlling the quality of our health care.

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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl.agree to start radiation, mapping on 9/21/9, 9/24 - mtg with uro/surg, 9/29- pre-op, 10/1 - 3rd corr. surgery - suprapubic cath/hard dialation, 10/5 - began IMRT SRT - 39 sessions/72 gys.


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4848
   Posted 10/21/2009 8:54 AM (GMT -6)   

Both have a problem that runs counter to everything people have been told about cancer: They are finding cancers that do not need to be found because they would never spread and kill or even be noticed if left alone. That has led to a huge increase in cancer diagnoses because, without screening, those innocuous cancers would go undetected.

Finding cancers that do not need to be found equals I hate when that happens.

If you don't go looking for it - how do you find the stuff that kills ya?


Age 54   - 5'11"   205lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6 
06/25/08 - Da Vinci robotic laparoscopy
05/14/09  - 4th Quarter PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.


mjluke
Regular Member


Date Joined Jan 2009
Total Posts : 189
   Posted 10/21/2009 9:17 AM (GMT -6)   
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Zen9
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Date Joined Oct 2009
Total Posts : 6
VIEW IMAGE   Posted 10/15/2009 12:05 PM (GMT -6)    VIEW IMAGE

Good morning David:

Did you ever consider that perhaps you and most others on this forum are wrong and that Zen9 has it right?

 

The issue is not really whether men should get a PSA test - they should if they wish.

The heart of the matter is why, a generation after the introduction of the PSA test, we still don't have any good way to distinguish which detected cancers are going to metastasize and cause suffering and perhaps death and which detected cancers will stay in the prostate for the remainder of the patient's life (and hence treatment will only lead to unnecessary incontinence, impotence, etc.).
 
The reason is that urologists, radiologists, and cancer centers have no financial incentive to find an answer to that issue.  Since the advent of the PSA test, for example, the average income of a urologist has jumped immensely. 
 
Thus, it is not a surprise to learn that the money, time, and energy is going into finding better ways to operate and radiate - not whether most of the surgeries or radiation sessions are justified in the big picture.
 
Catalona's last slide is too ridiculous to merit comment.
 
Otis Brawley has written some very intelligent and thought-provoking articles and editorials recently.  For example, read online his editorial "Prostate Cancer Screening: Is This a Teachable Moment?" from the August 31st edition of the Journal of the National Cancer Institute.  Then get the two long-term studies and read them yourself.  The American study suffers from many methodological problems - one of them fatal, in my opinion.  The European study, while far from perfect, is much better and raises some very troubling questions.
 
To be clear: I strongly suspect that most of the men on this board correctly chose to have their PC treated.  I am still comfortable with my choice.  But one should not extrapolate from the unrepresentative sample of PC patients on this board that the "overdiagnosis - overtreatment" issue isn't a very real and troubling one. 
 
Now I'll stand back and wait to get flamed.
 
Zen9
 
    

 
63 years old-tumor discovered on digital exam- biopsy December 2008-
4 of 12 samples positive-all on right side
Gleason 3+3=6
PSA-3
Otherwise excellent health.
Brachytherapy- May 19, 2009 -so far, so good.
 
  "There may come a day when the courage of men will fail, but it will not be this day."


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 10/21/2009 9:25 AM (GMT -6)   
Zen, you won't get flamed from me. I just politely disagree with the substance and tone of your last post in general. We will have to agree to disagree.

Until we have that perfect testing tool, that can distinguish clearly between agressive PC and indolent PC, the only sensible thing is to continue PSA testing and to encourage it further.

I will always be on the side of a patient's advocate. My own father basically was talked into dying earlier from his blood cancer by many months if not a few years by doctors and hospital staff. Once he gave up, he died quickly.

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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl.agree to start radiation, mapping on 9/21/9, 9/24 - mtg with uro/surg, 9/29- pre-op, 10/1 - 3rd corr. surgery - suprapubic cath/hard dialation, 10/5 - began IMRT SRT - 39 sessions/72 gys.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 10/21/2009 9:33 AM (GMT -6)   
mjuke, meant to make my answer back to you, not zen, got mixed up, but my answer still stands

steve - "They" don't like all the testing going on, because the tests are finding cancers, and the cancers are leading to primary and secondary treatments, and "their" bottom lines are taking a neglible hit. I think its almost that easy. Scary and sad at the same time.

Regardless of whether we should or shouldn't be tested, won't decrease a single case of existing cancer in a person's body. The only difference is that some people who know, will have treatment and live, and others won't die of the disease. For the rest of them, they will never know what hit them till its beyond hope. Doesn't sound fair to me.
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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl.agree to start radiation, mapping on 9/21/9, 9/24 - mtg with uro/surg, 9/29- pre-op, 10/1 - 3rd corr. surgery - suprapubic cath/hard dialation, 10/5 - began IMRT SRT - 39 sessions/72 gys.


STW
Regular Member


Date Joined Jun 2009
Total Posts : 292
   Posted 10/21/2009 10:19 AM (GMT -6)   
Part of the problem with the whole discussion is that these studies look at large groups where averages and probabilities work while we, naturally, look at it from an individual basis. What these studies miss is people. I worked with large groups of data and statistics and probabilities for years in the consumer industry. I can tell you what the chance something will happen is. I can't tell you what any one individual will do.

The problem is that groups don't get cancer and groups don't die. Individual people do. The fact that I had only 1:100,000 chance of getting a specific brain tumor 13 years ago was of absolutely no use when I beat the odds. The 95% chance of a cure wasn't nearly as heartening given that small chance that I'd ever need the cure in the first place. Odds don't work on an individual basis. You either do or you don't.

My father was diagnosed with PCa at 52. I was at 54. The probability that my younger brothers will not be regularly tested approaches zero no matter the group recommendation.

I believe every man should get tested regularly. The angst of knowing you have PCa but don't know if it is "bad" is of little consequence. Life is hard. Get over it and move on. Better you make a decision with some knowledge than wallow along in happy ignorance. Sometimes you just have to cowboy up.
Diagnosed at 54
PSA 8.7
Biopsy 1/7/09
4 of 6 cores positive, one at 90%
Gleason 3+4=7
Neg bone scan 1/15/09
One shot Lupron Depot 1/27/09
Tax Season
RP 4/29/09
Neg lymph nodes, postive seminal vesicle, 1 positive margin
Gleason 3+4=7 with tertiary 5
Catheter out at 2 weeks no nighttime incontinence
Pad free week 5
PSA 6/6/09 <0.1
PSA 9/10/09 <0.1


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4268
   Posted 10/21/2009 10:23 AM (GMT -6)   
David,
I saw the same thing from a UCSF news release this morning; was going to post it but you beat me to it. That report had some additional information: the cost of screening breast and PC is $20 billion per year. Some high grade tumors don't benefit from early screening as they are so agressive, treatments won't work. This is the reason the decline in deaths are lower than expected given the amount of early cancers that were detected by screening.
I'm still a strong advocate of screening, but as Zen9 said, "We could be wrong". I'll keep an open mind and evaluate new data as it comes in. Until then I'll keep telling everyone I know to get screened.
JT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


lifeguyd
Veteran Member


Date Joined Jul 2006
Total Posts : 686
   Posted 10/21/2009 10:29 AM (GMT -6)   
Purgatory said...
Who is paying off the American Cancer Society?  That is what I want to know.  What are they hoping to gain with this garbage?
How many more men will die because of this thinking from prostate cancer?  Call it over reacting if you wish, but it  ticked the hades out of me.  I use to have the highest support of the ACS, but no more.
 
Read for yourself:
 
 
David in SC

It is time that DrBrawley finds another job.  He obviously has a funded agenda. 
 
Most people here (this forum) understand the issue.  However the average guy on the street does not, and is looking for a reason not to see a doctor.  Many of those guys will die if they follow the advice of the American Cancer Society. 
PSA up to 4.7 July 2006 , nodule noted during DRE
Biopsy 10/16/06 ,stageT2A
Very Aggressive Gleason 4+4=8  right side
DaVinci Surgery  January 2007
Post op confirms gleason 4+4=8 with no extension or invasion
no long term continence problems
Post surgery PSA continues to be "undetectable"
One side nerves spared
Bi-Mix for ED 
born in 1941


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 10/21/2009 10:53 AM (GMT -6)   
stw - good answer

john - if we are wrong, then i want to be wrong on the side of those we help and save, not interested in being statisically correct.

lifeguyd - i wish dr. brawley would do the right thing and resign. he can no longer be considered objective or supportive of those whom he is suppose to be an advocate for. he's been bought or simply sold out for other reasons.
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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl.agree to start radiation, mapping on 9/21/9, 9/24 - mtg with uro/surg, 9/29- pre-op, 10/1 - 3rd corr. surgery - suprapubic cath/hard dialation, 10/5 - began IMRT SRT - 39 sessions/72 gys.


brad2513
Regular Member


Date Joined Oct 2009
Total Posts : 22
   Posted 10/21/2009 11:05 AM (GMT -6)   
I agree testing needs to be done ,this is hoe we prevent bad things in the future. Maybe instead of making statement like this the acs should be pushing for better testing that could help doctors and patients make decisions on treatment needs to proceed. As of right now the psa test is all we have so the acs should not be questioning it. I'm sure most of the thousands diognosed every year are happy they found out early, so they could be treated, be done with it and have a good chance to be free of it the rest of their life, and that those with advanced pc feel that sreening and early detection has not been pushed enough.

Edited by Moderator ~ TC-LasVegas.
Brad, while I did not make the connection to insensitivity myself, in hopes that the last sentence is not misconstrued I removed it.

Post Edited By Moderator (TC-LasVegas) : 10/21/2009 2:03:50 PM (GMT-6)


LenB
Regular Member


Date Joined Jul 2009
Total Posts : 102
   Posted 10/21/2009 11:11 AM (GMT -6)   

David,

 

Unfortunately, this is an off shoot of OBAMACARE!

God help this country if the current health care bill before congress is passed.

Len


Age: 65
DX: 7/10/09
Gleason: 7
Biopsey: 2 chips with some cancer cells out of 30.
Robotic Surgery: 9/10/09
Cath out: 9/23/09
1st post op PSA: 10/20/09: <0.0
 
 


Tim G
Veteran Member


Date Joined Jul 2006
Total Posts : 2361
   Posted 10/21/2009 11:12 AM (GMT -6)   
Whodda thunk it that screening using the PSA test would become such a controversial point of contention.  Most of us would agree that early detection of prostate cancer is essential.  But if screening is eliminated, how can prostate cancer be detected early?  By the DRE?  By symptoms? (It's already begun to metastasize by then).  By accident when diagnosing or treating other urological problems? By consulting a medical psychic?
 
Two areas of research, in my opinion, have some great possibilities to eliminate the scourge of prostate cancer:  (1) Development of a vaccine and (2) medical technology to allow the sub-identification of prostate cancers to determine whether they will be malignantly aggressive or slow-growing and harmless. Maybe there will be  some medical scientist who will one day win a Nobel Prize in Medicine for these discoveries.
 
Until then, the only way to determine if one has prostate cancer is annual screening.  At that point the choices become to treat it with the available  options or to engage in active surveillance.  


PSA quadrupled in 1 yr (0.6 to 2.5)  
DRE negative  1 of 12 biopsies positive (< 5%) 
Open surgery June 2006 at age 57
Organ-confined to one small area, Gleason 5   
PSA's undetectable  < 0.1  


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 10/21/2009 11:24 AM (GMT -6)   
I read this first thing this morning and have waited to post on it. Here is the feed from the Infolink as it pertains to this article.

prostatecancerinfolink.net/2009/10/21/acs-to-make-major-shift-in-cancer-screening-guidance/

I fully acknowledge that there are many cases of prostate cancer that do not need to be treated. But is the ACS position addressing the correct issues? I would ask the ACS the following questions:

1> Prostate cancer screening reveals indolent and aggressive cancers. Whether these cancers are one or the other, should they both not be monitored by a qualified physician?

2> Should a patient not be made aware of the ramifications of treating cancer? Is it not the medical communities responsibility to do this effectively? Instead it seems the direction of the ACS is just don't find the cancer, let it grow until we find it.

3> Since it is the ACS's position that cancer screening does more harm than good, is that the fault of the patient, doctors or the lack of education about cancer in the public eye? Isn't it too easy to say "since we don't know, then stop the screening programs all together"? Isn't it in part the ACS responsibility to educate the public about cancer?

4> Is there political influence or motivation to down play cancer screening on the cusp of a major spending bill in congress?

I believe that there is a need for better education in the US that cancer is not always deadly. This is probably true in other countries as well. But to avoid detection based on this is sweeping the issue under the rug, and is a step backwards in the study of cancer ~ Tony's opinion...

Tony
Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Gleason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
Hormone Therapy May '07 to September '09 ~ Currently off.
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (October 7, 2009): <0.1

My journey is at: www.caringbridge.org/visit/tonycrispino

My InfoLink page is at Tony's Prostate Cancer InfoLink Page

STAY POSITIVE!

Post Edited (TC-LasVegas) : 10/21/2009 10:27:47 AM (GMT-6)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 10/21/2009 11:46 AM (GMT -6)   
Tony - great post and opinion, well said, that's why you make the great spokesperson

Tim - good ideas there

Len, IMO, best to keep politics out of this on the forum, no offense intended

brad - you brought up good points too
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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl.agree to start radiation, mapping on 9/21/9, 9/24 - mtg with uro/surg, 9/29- pre-op, 10/1 - 3rd corr. surgery - suprapubic cath/hard dialation, 10/5 - began IMRT SRT - 39 sessions/72 gys.


Dave7
Regular Member


Date Joined Jul 2006
Total Posts : 202
   Posted 10/21/2009 12:21 PM (GMT -6)   
Excellent post Tony.

Clearly, changes need to be made in screening and treatment as the statistics support the claim that PC is overtreated.
I also think that as a group, there is a strong bias on this board toward screening and treatment. We don't want to think we're enduring all these quality of life side effects needlessly.

Dave
Age:54
PSA 5/22/06: 5.6
DaVinci surgery: 9/14/06
Gleason: 3+3
Organ confined, clean margins.
Both nerve bundles spared.


SHU93
Regular Member


Date Joined Aug 2008
Total Posts : 328
   Posted 10/21/2009 12:44 PM (GMT -6)   
Tony,
AWESOME Post!!! No More Relay For Life's for Me!!! What is the best Cancer and or Prostate Cancer organization to donate your time and money?
Age Dx 37, 7/2008, First PSA : 4.17 5/2008
Second PSA After 2 weeks of antibiotics : 3.9 6/2008
DRE: Negative 5/2008, Biopsy: 6 out 12 Postive all on right side, Gleason 7 (3+4). Bone Scan/CAT Scan: Clear 7/2008
Cystoscope: Normal 7/2008, Prostate MRI: Normal 7/2008
Da Vinci Surgery 7/2008, PostOp: T2c (On Both sides), margins clear, seminal clear, nodes, clear. Gleason 6(3+3).
4 Post OP PSA's from 9/2008 to 6/2009: <0.1
 
 
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 10/21/2009 1:23 PM (GMT -6)   
I donate to PCF. They are dedicated to prostate cancer research. But there are other organizations to consider as well. Community based organizations help at the local community level.

More important than shunning the ACS, I would write them with your feelings.

Tony
Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Gleason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
Hormone Therapy May '07 to September '09 ~ Currently off.
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (October 7, 2009): <0.1

My journey is at: www.caringbridge.org/visit/tonycrispino

My InfoLink page is at Tony's Prostate Cancer InfoLink Page

STAY POSITIVE!


Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 10/21/2009 1:40 PM (GMT -6)   
Dave7 said...
Excellent post Tony.

Clearly, changes need to be made in screening and treatment as the statistics support the claim that PC is overtreated.
I also think that as a group, there is a strong bias on this board toward screening and treatment. We don't want to think we're enduring all these quality of life side effects needlessly.

Dave


Dave you're right on the mark. It's only human to make yourself believe any unpleasant experiences have been worth the effort and sacrifice. But there's no doubt as time goes by that PCa at this time is over diagnosed and over treated. That's been my contention for the last 2+ years and time is proving me right.

A major problem with the present make up of this forum is that there should maybe be two PCa forums. One for low risk detected PCa and for advanced PCa. The majority of posts here are made by the latter. In fact there's one member here who I swear cannot see a thread go by without some input from him. Thus he really dominates this forum and its discussion but I digress.

I quit posting here because I knew in time I'd start screaming at people not to do a knee jerk reaction, scheduling radical treatments without thinking it all through. Nor by not reading of the latest studies and announcements many about over treating and less screening. In fact not long ago I read of another here with low risk PCa, who eight weeks after Dx had radical surgery Friday and was expecting to go back to work Monday seemingly oblivious of any possible after effects. Needless to say I'm sure he still hasn't. Radical treatments are just that. The side effects can be long lasting and life changing. If the odds are they aren't needed it should be told or least read about. It may offend some here who may have to question if all they have gone through was ever needed. I understand that, but that's no reason to condemn what is a definite trend coming out of the medical community. I don't believe its urologists in cahoots with big insurance or reading here the other side that's it's all Obama's fault. One thing this present forum tries to ignore is that there are far more men with low risk Pca than will ever have terminal advanced Pca. For the former is those who these studies and announcements are targeted for. Will some men die because of them? Possibly a few but that's in hope of preventing many many more from unneeded life changing affects on body, soul and relationships.

When another such study or announcement comes out we will hear the same posts once again. But the fact more such announcements will come I believe to be inevitable.

Post Edited (realziggy) : 10/21/2009 1:03:35 PM (GMT-6)


Red Nighthawk
Regular Member


Date Joined Oct 2009
Total Posts : 289
   Posted 10/21/2009 1:47 PM (GMT -6)   
Rush Limbaugh was all over this on his show today, prompted by a very articulate women who has survived breast cancer due to her early detection and screening.
Age: 62
Pre-op PSA: 4.1
Gleason grade: 3+4=7, present in both lobes, at least 1.1 cm, and occupying less than 5% of prostate by volume. pT2c NX MX
No lymphatic/vascular invasion present.
Seminal vesicles and extraprostatic soft tissue free of tumor.
Inked margins are free of tumor.
High grade prostatic intraepithelial neoplasia is present
Robotic RP: Sept. 15th, 2009 1 day in hospital, cath out on 9th day
Post-op PSA: 4 weeks .04
Surgeon: Dr. Jim Hu, Brigham & Women's Hospital, Boston


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 10/21/2009 2:27 PM (GMT -6)   
I would be willing to bet that 90% of our members here who have advanced prostate cancer found out they had cancer through screening. Radical prostatectomy has played a huge role in this, the decision by the ACS, the halting of screening, was based on ALL treatment modalities and their related SE's.

When did the SE factor get in front of saving the lives of those who did benefit from screening?

This amazes me, and I agree that there are many over-treated patients, but the fact is that many of those complaining about RP did not even have an RP.

Tony
Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Gleason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
Hormone Therapy May '07 to September '09 ~ Currently off.
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (October 7, 2009): <0.1

My journey is at: www.caringbridge.org/visit/tonycrispino

My InfoLink page is at Tony's Prostate Cancer InfoLink Page

STAY POSITIVE!

Post Edited (TC-LasVegas) : 10/21/2009 1:48:53 PM (GMT-6)


stxdave
Regular Member


Date Joined Nov 2008
Total Posts : 65
   Posted 10/21/2009 3:11 PM (GMT -6)   
Zen, I don't believe anyone cares if Dr. Brawley is a black man. It is his position that is abhorrent to many of us. If or when we have government controlled health care, his opinion will become gospel and no other will be heard. I had better shut up. Someone will accuse me of hearing black helicopters again.

Dave
Dx'd 1999, Age 60, PSA 43, Gleason (3+4=7), T3c
42-3d EBRT w/Lupron/Casodex for 24 months.
July 2001 - Intermittent ADT. Lupron only, MDAnderson biopsy revised Gleason (4+5=9).
March 2007 - Diminishing returns with Lupron, Prostate biopsy (5+4=9) in unradiated lobe.
August 2007 - RRP and bilateral orchiectomy. PSA <0.1
99% continent immediately
Sept 2008 - PSA 0.45, Nov 2008 - PSA 0.67,
Dec 2008 - Resume Casodex, Stricture in bladder neck requiring surgical removal. 99% incontinent immediately.


lifeguyd
Veteran Member


Date Joined Jul 2006
Total Posts : 686
   Posted 10/21/2009 3:29 PM (GMT -6)   
LenB said...


David,



Unfortunately, this is an off shoot of OBAMACARE!

God help this country if the current health care bill before congress is passed.

Len




That statement does not belong on this forum.

Post Edited By Moderator (TC-LasVegas) : 10/21/2009 3:34:27 PM (GMT-6)

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