New recommendation for Active Surveilence.

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John T
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Date Joined Nov 2008
Total Posts : 4227
   Posted 1/16/2010 6:06 PM (GMT -6)   
Along with the Prostate Cance Research Institute, many other PC organizations are starting to recommend As as the 1st line treatment for low risk PC.

From the "New" prostate Cancer InfoLink...

In a news release issued earlier today, the National Comprehensive Cancer Network (NCCN) has announced updates to the NCCN Clinical Practice Guidelines for Oncology™ for Prostate Cancer, and has placed a new emphasis on the value of active surveillance in management of men with low and very low risk of clinically significant disease.

The revised NCCN clinical guidelines now include an explicit recommendation for active surveillance and only active surveillance for many men diagnosed with prostate cancer. In particular, they state that:

Men with low-risk prostate cancer who have a life expectancy of less than 10 years should be offered and recommended active surveillance.
A new “very low-risk” category has been added to the guidelines using a modification of the so-called “Epstein criteria” for clinically insignificant prostate cancer.
* Only active surveillance should be offered and recommended for men with very low-risk prostate cancer when life expectancy is less than 20 years.

This new guidance may be considered controversial by many in the patient and the physician community, given the lack of established outcome data from randomized clinical trials comparing active surveillance to immediate interventional therapy. However, The “New” Prostate Cancer InfoLink would emphasize that active surveillance is not “no treatment.”

Active surveillance is a “deferred treatment” strategy, whereby the patient and his doctor set out to give necessary treatment only if and when it is needed. The intent is to be able to offer curative therapy to patients who need curative therapy before the disease spreads but to avoid over-treatment of patients who are likely to have greater risk of harm than benefit from immediate curative treatment. And in the case of many patients this means that treatment may be deferred indefinitely or even forever.

According to James L. Mohler, MD, of Roswell Park Cancer Institute, who is the current chair of the NCCN Guidelines Panel for Prostate Cancer, “The NCCN Prostate Cancer Guideline Panel and the NCCN Prostate Cancer Early Detection Panel remain concerned about over-diagnosis and over-treatment of prostate cancer. Growing evidence suggests that over-treatment of prostate cancer commits too many men to side effects that outweigh a very small risk of prostate cancer death.”

“Although the NCCN Guidelines Panel stresses the importance of considering active surveillance, ultimately this decision must be based on careful individualized weighting of a number of factors including life expectancy, disease characteristics, general health condition, potential side effects of treatment, and patient preference,” notes Dr. Mohler. “It is an option that needs to be thoroughly discussed with the patient and all of his physicians which may include his urologist, radiation oncologist, medical oncologist, and primary care physician.”

It will be interesting to see how the urology and the radiation oncology communities react to these guidelines. Even though respected urologists and radiation oncologists are members of this guideline committee, that does not necessarily mean that the rest of the urology and radiation oncology community are going to rush to endorse this guidance. For the “New” Prostate Cancer InfoLink, we believe that the emphasis needs to be placed on the “thorough discussion” that needs to take place between the patient and his physicians.

JohnT
 
John My edit was to add where this article came from...

Post Edited By Moderator (TC-LasVegas) : 1/17/2010 9:13:37 PM (GMT-7)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/16/2010 8:14 PM (GMT -6)   
Good information here. Now if the urologists, surgeons, radiation folks, and the rest of the medical community would not only embrace, but start teaching and encouraging these AS standards, it could change a lot out there.
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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
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 in place


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 310
   Posted 1/16/2010 9:38 PM (GMT -6)   
Don't hold your breath.

Zen9
No family history of PC.  PSA reading in 2000 was around 3.0 .  Annual PSA readings gradually rose; no one said anything to me until my PSA reached 4.0 in September 2007, at which point my internist advised me to see a urologist.   
Urologist advised a repeat PSA reading in six months = 4.0 .  Diagnosed May 2008 at age 56 as a result of 12 core biopsy.  Biopsy report by Bostwick Laboratories = Gleason 3 + 3. 
Interviewed two urologists - the one who did the biopsy and another - the latter had the biopsy slides re-examined = Gleason 3 + 3. 
Then went to M. D. Anderson Cancer Center in Houston in July 2008 and met with a urologist and a radiologist.  Biopsy slides re-examined yet again, this time by MDA's internal pathology department = Gleason 3 + 4.   
Chose da Vinci surgery over proton beam therapy; surgery performed at M. D. Anderson Cancer Center on August 15, 2008.  Post-operative pathology report = four tumors, carcinoma contained in prostate, clean (negative) margins, lymph nodes clear, seminal vesicles clear.  Gleason = 4 + 3. 
Minor temporary incontinence; current extent of ED uncertain due to lack of sexual partner; refused treatments for ED as being pointless under the circumstances. 
PSA readings: 
November 2008 = <0.1 ["undetectable"]
June 2009 = <0.1   
December 2009 = <0.1
 


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 1/17/2010 6:25 AM (GMT -6)   
This was a powerful endorsement by the NCCN.  For easy reference, I saw the recommendations summarized this way:
 
 
 
NCCN recommends AS (and only AS) in these 2 situations:

Situation 1:
(a) "Low Risk case"
• PSA less than 10, and
• GS 6 or less, and
• T1 (any) or T2a

AND (b) LT 10 years life expectancy (if GT 10 years, include AS as an option)


Situation 2:
(a) "Very Low Risk case" (new categorization)

• all of "Low Risk case conditions, plus,
• LT 3 cores positive, and
• LE 50% of any core positive, and
• PSA Density LT 0.15
AND (b) LT 20 years life expectancy
 
 
 
 -------------------------------------------------------
  • Edit on 1/18:  Added the "AND" for clarity
  • A 2nd edit on 1/18:  added the multiple ", and" for further clarity; some people were confusing these as "OR", but ALL the criteria have to be present to meet the NCCN guidelines.
 
 

Post Edited (Casey59) : 1/18/2010 10:34:23 AM (GMT-7)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/17/2010 9:48 AM (GMT -6)   
Casey,

Those sound like very reasonable criteria levels to safely reccomend and/or use AS.
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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
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 in place


coxjajb
Regular Member


Date Joined Nov 2008
Total Posts : 184
   Posted 1/17/2010 11:00 AM (GMT -6)   
While these may be reasonable criteria to recommend AS, I like to have a choice in my treatment options. When I read "NCCN recommends.... and only recommends......., I fear we are moving closer to a day when we will not have that choice. Just my $.02
Age 51
Pre - Op PSA, 4.3
Gleason 3+4=7
Stage T1C
da Vinci Prostatectomy 8/1/08
No issues with incontinence since day 1 after catheter removal
Mild ED for about 10 months. Levitra worked well for me. No ED at one year.
PSA 0.00 at one year post


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 1/17/2010 11:11 AM (GMT -6)   

You have a potentially valid point, coxjajb, except you  might not have actually read the text of announcement, posted here originally by John T.

 

Two relevant points to consider in the NCCN recommendation, and I will merely copy/paste from John T’s posting, noting the John copied/pasted from the announcement:

 

(1)

Active surveillance is a “deferred treatment” strategy, whereby the patient and his doctor set out to give necessary treatment only if and when it is needed. The intent is to be able to offer curative therapy to patients who need curative therapy before the disease spreads but to avoid over-treatment of patients who are likely to have greater risk of harm than benefit from immediate curative treatment. And in the case of many patients this means that treatment may be deferred indefinitely or even forever.

 

(2)

“Although the NCCN Guidelines Panel stresses the importance of considering active surveillance, ultimately this decision must be based on careful individualized weighting of a number of factors including life expectancy, disease characteristics, general health condition, potential side effects of treatment, and patient preference,” notes Dr. Mohler. “It is an option that needs to be thoroughly discussed with the patient and all of his physicians which may include his urologist, radiation oncologist, medical oncologist, and primary care physician.”

 

 

I think that these two points directly address your comment, coxjajb. 

 

There is an additional element about ridiculously run-away costs in our existing healthcare system needing desperately to be contained, but I won’t touch that topic as it would not be appropriate in this forum.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/17/2010 11:57 AM (GMT -6)   
coxjajb,

I am with you, I am all about the freedom of treatment choice, though I agree with the AS criteria as stated. At no point, do I want any insurance company, doctor, or govt. dictating what treatment I can or can't have. I would never tell a person that had a "low grade" case of PC, that they had to practice AS, until evidence told otherwise for additional treatments. That would be a very personal and subjective call, and who would get to make that call and why? And what if they were wrong?
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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
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 in place


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4227
   Posted 1/17/2010 11:58 AM (GMT -6)   
Coxjajb,
The real point I'm trying to make is that there is nearly not enough information being given to patients about the real benefits of AS. Up until recently all you heard from doctors was that you have cancer and the best option is to treat it early. This by far was the most common advice given.
Now it is realized that there are two distinct types of PC. One is low risk in which the cure is worse than the disease, and high risk where life is in danger and treatment is a necessity. It is also being released that one can safely wait for a period of years to determine which disease you have and get treatment with the same cure rate as if you never waited.
The real risk to AS is not the progression of the low risk cancer, but the fact that the initial biopsies may have missed a high risk PC. This is why PSA monitoring and an additional biopsy are necessary within a year. I always recommend a color doppler ultrasound for anyone considerins AS, as it will spot any high risk tumors and establish a baseline scan to monitor any future changes.
JohnT

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


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/17/2010 3:50 PM (GMT -6)   
There is certainly room for error with AS guidelines. I can name a few members here who fell well into the AS category and after surgery had small tumors that still were outside the capsule.

I still believe that this is a best guess approach for AS. Because we have no way of testing whether a tumor is potentially lethal or not, we HOPE that we guess right. I believe that adding another criteria is not a bad suggestion. And that is "What is the family history with the disease"? One member here had prevalence of aggressive prostate cancer in his immediate family and decided to treat his disease, even though the disease "appeared" to be early and small. Certainly makes sense if the family history includes aggressive disease to disregard these guidelines from the NCCN and take advantage of the early opportunity?! I'd hate to see in those less common cases a "deferred" treatment becoming a regrettable hindsight...

Just my penny's worth...

Tony
Prostate Cancer Forum Co-Moderator


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4227
   Posted 1/17/2010 4:13 PM (GMT -6)   
Tony,
I agree with you. I believe the most risk in AS occurs early and is due to the misidentification of the tumor, as biopsies are somewhat innacurate. There are a number of ways to mitigate these risks to asertain if one has true low risk factors. A 3D mapping biopsy and Color Doppler ultrasound are two of them and certaintly much less harsh than surgery or radiation. These options are rarely mentioned to patients who are only given the options of treatment or waiting. Provided with all the information including additional testing then a patient can have a more informed choice.
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


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 1/17/2010 4:32 PM (GMT -6)   
If I fit the LOW RISK category and I have less than 10-years life expectancy, I'm going to be glad someone pointed out to me that I would be more likely to die WITH PC than die FROM PC [remember...low risk criteria], and retain my dignity and quality of life through my remaining years...especially after reading all the posts at sites like this of guys struggling with either rising PSA afterwards or incontinence or ED issues. I would say, "The heck with surgery, this NCCN recommendation was written for (the hypothetical) me! Pour me another high ball!"

Tony, those guys you know with less than 10-years life expectancy who chose surgery anyhow and found additional escaped cancer later...with all they've gone through and are going through, do you think they now wish they had been more strongly advised that it would be more likely to die with than from PC??  Honestly??

Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 1/17/2010 5:11 PM (GMT -6)   
This release is no longer a trend, just another in an ever rising flood of what I have stated for 2+ years now. The recent past will be looked on somewhat in horror due to the over treatment since Psa. It's actually good news for the future. It has always been a quality of life issue versus just possible added longevity. Bottom line are how many men suffered with incontinence both short and long term who never needed to? How many relationships have been forever altered due to ED? I understand those who want to insist that radical treatments saved their lives and in many cases it has but it's now undeniable for many more the cure was far worse than the disease. Sorry to say but it's not the first time thats happened in medicine, nor will it be the last. If situation 2b above become the recommendation that AS will be recommended for those with less than 20 years life expectancy was true I would've followed it for sure when dx in my late 50s and why not when you're in your 60s. Hell making it to mid 70s to 80 was the best I ever hoped for and l imagine my past life style will kill me before then with something else, other than PCa. So if that does become the case keep your catheter and god da.mn pads I won't do anything else. A small risk to keep a better quality of life and your dignity as one ages. Isn't aging alone bad enough?
Diagnosed 11/08/07 - Age: 58 - 3 of 12 @5%
Psa: 2.3 - 3+3=6 - Size: 34g -T-2-A
 
2/22/08 - 3D Mapping Saturation Biopsy - 1 of 45 @2% - Psa:2.1 - 3+3=6 - 28g after taking Avodart - Catheter for 1 day -Good Candidate for TFT(Targeted Focal Therapy) Cryosurgery(Ice Balls) - Clinical Research Study
 
4/22/08 - TFT performed at University of Colorado Medical Center - Catheter for 4 days - Slight soreness for 2 weeks but afterward life returns as normal
 
7/30/08 - Psa: .32
11/10/08 - Psa.62 - Not unexpected bounce after the 80% drop the quarter earlier. Along with urine flow readings, an acceptable amount left in bladder measured by sonic. Results warrant skipping third quarter tests, and to return April, 2009 for final biopsy scheduled to
complete clinical research study 
 
April 2009 12 of 12 Negative biopsy
10/12/09 - Psa .30
 
 
 

Post Edited (realziggy) : 1/17/2010 4:19:14 PM (GMT-7)


Casey59
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Date Joined Sep 2009
Total Posts : 3172
   Posted 1/17/2010 5:20 PM (GMT -6)   
Just to be clear, the NCCN recommendations for Situation 1 includes (a) AND (not OR) (b), and similarly Situation 2 includes (a) AND (not OR) (b).

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/17/2010 5:30 PM (GMT -6)   
Casey,
I have witnessed a case here that had a gentleman at age 45 get screened with good results (very low PSA so no flags raised) only to lose a battle to prostate cancer by the age of 51. He did have family history with the disease. In fact, I have now witnessed the stories of multiple men who had the disease detected for less than ten years lose their battles.

I am not suggesting that a guy at age 80 treat his disease unless his family history is living over 90. LT or GT 10 years is a very ambiguous statement.

On the other hand, I know of very few 44 year olds who have life expectancies of less than 30 years. Even if my disease was detected at age 40 with the G6 and PSA at say 4, I would have rather treated it then than be where I sit right now...

Just a thought.

Tony
Prostate Cancer Forum Co-Moderator


Tony Crispino
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Date Joined Dec 2006
Total Posts : 8128
   Posted 1/17/2010 5:41 PM (GMT -6)   
BTW Ziggy,
I am fully continent and have been returning to full functionality since stopping HT. After a good surgeon, radiation, and HT I view that glass as half full. And I have seen far more like me than has been described here at HW by those who did not choose surgery.

Thank you again, as always, for the cynicism...

Tony
Prostate Cancer Forum Co-Moderator


Ziggy9
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Date Joined Jul 2008
Total Posts : 981
   Posted 1/17/2010 8:17 PM (GMT -6)   
TC-LasVegas said...
BTW Ziggy,
I am fully continent and have been returning to full functionality since stopping HT. After a good surgeon, radiation, and HT I view that glass as half full. And I have seen far more like me than has been described here at HW by those who did not choose surgery.

Thank you again, as always, for the cynicism...

Tony


As I always say my opinions are for the larger group of those from mid 50s on up. Those with low risk numbers. Those are rarely seen here in their 40s. As far as you being fully continent that's great but few here are ever continent post surgery and it seems months are to be expected for continence and some poor souls many months or never. Dry orgams are for everyone with radical treatments and ED for most be it temporary (a few) or permanent in some regard for the majority.

Why are you thanking me for cynicism? I see this trend of AS releases and studies to be of good news. You appear to want the status quo of over treatment and its effects to continue for those who may very well not need it. It's always quality of life issues over just possible increased longevity where I guess we will always differ.

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/17/2010 9:53 PM (GMT -6)   
Ziggy,
I wasn't talking about the AS part of your post, there were other parts that were very negative.

I support active surveillance in the form that the NCCN has released their new guidelines to. Perhaps what you don't understand is only 25% to 30% will qualify under the guidelines listed by the NCCN. This means that they do not recommend AS for most prostate cancer patients. My caution about it remains unchanged because I have seen it fail to control disease. The link below at YANA shows a high degree of men switching to treatment:

www.yananow.net/Experiences.html#as

What this means is that even men who choose AS are likely choosing deferred treatment as opposed to no treatment, and they are blindly doing so. So side effects of therapy may still be coming.

And for those who had surgery, most men do not have incontinence very long and ED is treatable so it is misleading to say it ruins QoL. These things certainly are not worth dying prematurely over. 28,000 men still die of prostate cancer each year in the US alone. PSA has led to over treatment for some, but not all, and we used to see a much higher rate dying prior to the PSA era so there is some good that has come out of screening.

I prefer to be positive about it in support of all here regardless of their treatment choices. All cancers have treatment side effects that are nasty. Certainly the girls and the kids who have had cancer go through far worse than we do, but they bounce back very well. I have to say they are a lot tougher than a lot of us guys about SE's...

Tony
Prostate Cancer Forum Co-Moderator


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 1/18/2010 2:30 AM (GMT -6)   
Tony, so make a decision, finally...support it or not. Your posts say one thing, then another. You cite cases which are outside (and therefore not relevant) the two situations in the NCCN AS guidelines as supporting comments which initially appeared to be NOT in support of the guideline (I really couldn't tell what your point was, frankly), then you flip and say "I support active surveillance in the form that the NCCN has released...", in the prior posting, then flop and go on in the next sentences to second guess it.

Let me be perfectly clear, I absolutely support the NCCN Guideline and will use it to help guide PC patients who are exploring paths in the future. The NCCN is generally regarded as a conservative body, and their endorsement is a major step forward in support of getting the word out more clearly, and more widely, on when AS is most appropriate. Patients fitting into the guidelines have been underserved in the past by being presented with strong arguements for aggressive treatments, and generally by understating AS.

My crystal ball says as we will continue to get more & more similar endorsements of AS by professional medical communities as we continue, step by step, to better define and document characteristics of low risk cases and very low risk cases. These positive statements will help offset the debacle of 2009 about PSA screening recommendations.

Reinardo
Regular Member


Date Joined Jan 2010
Total Posts : 23
   Posted 1/18/2010 9:09 AM (GMT -6)   
Hi everybody. With great interest I followed the discussion because the matter concerns me. When I was diagnosed in 2001 I had PSA = 8.9 gleason 2+3 = 5, bone scan negative. So I would have matched the criteria for active surveillance. But at that time I was quite ignorant about prostate cancer. I shied away from surgery and radiation because of the side effects and instead chose androgen deprivation for 13 months as suggested by the American oncologist Leibowitz.
On treatment the PSA went down to undetectible but thereafter it slowly but steadily went up to by now 10.x (under Proscar).
But, not only has PSA gone up but also has malignancy deteriorated as was evidenced by susequent biopsies. I had an ordinary biopsy done on first diagnosis in 2001. I would not want another one. So I travelled long distances to have fine needle aspiration biopsies done. These do neither hurt nor bleed nor are they risky.
Add to this the problem of determining the gleason accurately. This is just the pathologist's opinion. What one pathologist may determine as gleason 3+4, another pathologist might consider to be 4+4. To cope with this problem I ignored gleason altogether and switched to DNA analyis (Ploidy) which is done by computer program.
Now, my point is that, though I wholeheartedly welcome the AS option, I feel that urologists may not prepared to monitor it.
Reinardo


Diagnosed  in 2001, PSA = 8.9  Gleason 2+3 = 5
In 2001/2002 triple hormone therapy  protocol Leibowitz.
Watchful waiting thereafter.
Actual PSA = 10.6
Change of lifestyle and diet, food additives,  homoeopathy
In 2009 palliative TUR

Post Edited (Reinardo) : 1/18/2010 8:56:39 AM (GMT-7)


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 310
   Posted 1/18/2010 9:58 AM (GMT -6)   
Realziggy,

Add a sentence about the greed of many in the medical profession and I agree with you completely.

The people on this board have very important stories to tell and deserve everyone's full and unmitigated support, but they are not representative of the majority of PC patients.

How many men are incontinent that didn't need to be?

How many men have ED that didn't have to?

How many men have lost their spouse/girlfriend/significant other?

How many men have lost their job/career?

How many men are - as you so eloquently put it - aging alone?

A generation after the PSA test, we can diagnose PC fairly well but can't adequately predict whether it needs to be treated. Why not? Because a lot of people are making a lot of money precisely because we can't.

Zen9
No family history of PC.  PSA reading in 2000 was around 3.0 .  Annual PSA readings gradually rose; no one said anything to me until my PSA reached 4.0 in September 2007, at which point my internist advised me to see a urologist.   
Urologist advised a repeat PSA reading in six months = 4.0 .  Diagnosed May 2008 at age 56 as a result of 12 core biopsy.  Biopsy report by Bostwick Laboratories = Gleason 3 + 3. 
Interviewed two urologists - the one who did the biopsy and another - the latter had the biopsy slides re-examined = Gleason 3 + 3. 
Then went to M. D. Anderson Cancer Center in Houston in July 2008 and met with a urologist and a radiologist.  Biopsy slides re-examined yet again, this time by MDA's internal pathology department = Gleason 3 + 4.   
Chose da Vinci surgery over proton beam therapy; surgery performed at M. D. Anderson Cancer Center on August 15, 2008.  Post-operative pathology report = four tumors, carcinoma contained in prostate, clean (negative) margins, lymph nodes clear, seminal vesicles clear.  Gleason = 4 + 3. 
Minor temporary incontinence; current extent of ED uncertain due to lack of sexual partner; refused treatments for ED as being pointless under the circumstances. 
PSA readings: 
November 2008 = <0.1 ["undetectable"]
June 2009 = <0.1   
December 2009 = <0.1
 


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 1/18/2010 10:31 AM (GMT -6)   

Reinardo,

Thanks for chiming in.  Your posting serves as a reminder for several important points.

First, all patients should have their biopsy slides interpreted by an expert in Prostate Cancer.  If your urologist sends your samples to a local, generalist pathologist, you should obtain them and send them to a specialist for a second opinion.  Obviously, the correctly interpreted Gleason score is key to any and all treatment modes.

Secondly, your (subtle) reminder that a successful Active Surveillance program involves lifestyle modifications, including exercise, foods, stress, etc.  This is a key component of while it is no longer referred to as “Watchful Waiting”, which implies a passive “business as usual” approach, rather than the “Active” holistic engagement of the patient.

By the way, Reinardo, you didn’t mention your age, but you did mention that you “would have matched the criteria for active surveillance”…I’m assuming you meant the “Low Risk” Situation since you didn’t mention any of the metrics for the “Very Low Risk” criteria.  This would imply that if you met the NCCN criteria for “Low Risk” at the time you considered undertaking AS your age was 75 or greater (or thereabouts, with a life expectancy of LT 10 years).  For reference, see Actuarial Life Tables (http://www.socialsecurity.gov/OACT/STATS/table4c6.html); other tables can be further refined for individual health conditions, but this serves as a basic reference.  If you were younger than this (had longer life expectancy), then AS might have been recommended by some, but you would be outside the NCCN guidelines. 

Anyhow, while have no affiliation with the NCCN, support from empowered knowledgeable groups like the participants on boards like this can help provide momentum to further acceptance.


Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 1/18/2010 10:34 AM (GMT -6)   
Tony you really should look at that yananow survey before you give it out to back your opinion. Looking at it I see out of 75 who were on AS, 5 later had surgery, 8 still on AS/WW, 22 with no further response (I assume no change from AS), 10 cancer free, 4 radiation, others on anything from red wine to life style changes to finasteride, clinical trials etc.I don't understand some of the therapies such as human milk,herbs and diet etc. Not to mention the respondents go as far back as 1994. There also some deaths but those were from guys with psas of 60. 127 and yes one guy who passed away with a psa of 11 back in 1998(I assume his numbers got worse before his death whenever it was). This is somewhat outdated anecdotal evidence at best. I'll go along with those studies published in the NEJM last March or this recent NCCN release over this "proof" of men switching from AS to treatment. Is human milk really a valid option? Besides no one ever said you'll do AS forever it is after all ACTIVE surveillance if the numbers change you should opt for treatment. Even if it at worse delays treatment a few years look at all the gains that are coming about. My TFT is one option that should be more common in the next few years. There's the soon to be approval of HIFU that will benefit some with PCa along with other current clinical studies going on. Postponement may be a major benefit to many men in time. AS is essentially a minimal treatment until then if necessary if ever needed. Also Tony if you can preserve the quality of lives for 25 30% of us that's a lot of lives. I never ever say AS is for everyone. The old gold standard is tarnishing over time as it should.
Diagnosed 11/08/07 - Age: 58 - 3 of 12 @5%
Psa: 2.3 - 3+3=6 - Size: 34g -T-2-A
 
2/22/08 - 3D Mapping Saturation Biopsy - 1 of 45 @2% - Psa:2.1 - 3+3=6 - 28g after taking Avodart - Catheter for 1 day -Good Candidate for TFT(Targeted Focal Therapy) Cryosurgery(Ice Balls) - Clinical Research Study
 
4/22/08 - TFT performed at University of Colorado Medical Center - Catheter for 4 days - Slight soreness for 2 weeks but afterward life returns as normal
 
7/30/08 - Psa: .32
11/10/08 - Psa.62 - Not unexpected bounce after the 80% drop the quarter earlier. Along with urine flow readings, an acceptable amount left in bladder measured by sonic. Results warrant skipping third quarter tests, and to return April, 2009 for final biopsy scheduled to
complete clinical research study 
 
April 2009 12 of 12 Negative biopsy
10/12/09 - Psa .30
 
 
 


Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 1/18/2010 10:37 AM (GMT -6)   
Zen9 said...
Realziggy,

Add a sentence about the greed of many in the medical profession and I agree with you completely.

The people on this board have very important stories to tell and deserve everyone's full and unmitigated support, but they are not representative of the majority of PC patients.

How many men are incontinent that didn't need to be?

How many men have ED that didn't have to?

How many men have lost their spouse/girlfriend/significant other?

How many men have lost their job/career?

How many men are - as you so eloquently put it - aging alone?

A generation after the PSA test, we can diagnose PC fairly well but can't adequately predict whether it needs to be treated. Why not? Because a lot of people are making a lot of money precisely because we can't.

Zen9


Thanks Zen but you misread my aging alone. I'm not that poetic. I meant aging itself is bad enough to be going through.

Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 1/18/2010 10:44 AM (GMT -6)   
Zig,
I certainly wouldn't say that "the old gold standard is tarnishing" in fact I would stay it is making continuous improvements over time. So is radiation. You also mentioned HIFU, and it, too, is low on the learning curve and so making big steps in continuous improvement, also...one day it will get good enough to be FDA approved, I predict. Each treatment solution has it's place in the wide spectrum of patients. Surgery is not the best for everyone, AS is not the best for everyone, HIFU won't be for everyone, etc., etc. We will not get to a one-solution-fits-all situation in our lifetimes.
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