AUA - Klotz - PSA Misses the Mark in Active Surveillance.

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Jim is sick
Regular Member


Date Joined Mar 2010
Total Posts : 118
   Posted 6/3/2010 11:47 AM (GMT -6)   
My wife read this and printed it for me. I thought I would share it here.
 
Link:http://www.medpagetoday.com/MeetingCoverage/AUA/20444
 
The gist of it basically is, PSA is not a good way to decide when treatment is required in AS. But, they don't have anything better though. What got me was, in this study there seems to be a 97% chance of survival even with no treatment at all. I may be reading more into it, but not sure.
 
It also says "Comparing cause-specific versus nonprostate cancer survival resulted in a hazard of 18.6." but I'm not sure what that means exactly. Can anyone explain it?
 
Quoting the summery, "These results show that a transient rise in PSA should be interpreted with caution in men on active surveillance," said Klotz. "Almost all of these commonly used PSA triggers would have resulted in high rates of recommendations for treatment, on repeated occasions." 


48, Caucasian, 5' 8", 200lbs, 190lbs, general good health.
PSA: 8-7-09 3.22, 11-13-09 4.25.
Biopsy: 32 cores. 3 cores reveal PCa, 10%, Gleason 3+3=6, T1C.
Diagnosed: 2-12-10.
Current Treatment: Active Surveillance, next appointment Oct. 2010. No meat, no dairy, lots of fruits and vegetables.
Preferred Treatment: I just want someone to harvest my immune cells, genetically engineer them to fight my prostate cancer, and then infuse them back into my body...

Post Edited (Jim is sick) : 6/3/2010 10:52:28 AM (GMT-6)


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 314
   Posted 6/3/2010 12:14 PM (GMT -6)   

Thanks for posting this link.

Zen9


el perro
Regular Member


Date Joined Mar 2010
Total Posts : 46
   Posted 6/3/2010 1:25 PM (GMT -6)   
I believe hazard (ratio) refers to the relative risk of dying from something else. Earlier in the article they mentioned the men in the study were 19 times more likely to die of something other than prostate cancer, so more precisely it was 18.6 times more likely to die of something else.
Dx 11/2008, Gleason 3+3
Active surveillance for now


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 6/3/2010 1:31 PM (GMT -6)   

Hi Jim, thanks for posting this link.  The comments in this article reiterate parts of a similar conversations here at HW; in fact just yesterday in the thread titled: "AUA 2010 Press Release", I wrote:

We are in such great need of moving to the next generation of test which is specific to the aggressive strain so that we can retire the current PSA test.  The current PSA test is the best available today, but the efficacy is poor.  I'm hopeful that the next-generation screening method comes along before my son becomes of age. 
 
Our contributions to the American Cancer Society will help the advancement of research and development for improved prostate cancer screening.

In the article you posted, Klotz was also saying the PSA isn't very good, but it's the best we have.  He specifically spoke of the PSA transients (changes) which might have unnecessarily triggered treatment in AS patients.

To your question...

Jim is sick said...
It also says "Comparing cause-specific versus nonprostate cancer survival resulted in a hazard of 18.6." but I'm not sure what that means exactly. Can anyone explain it?
 
The "hazard" is talking about the "hazard ratio", which is basically a fancy statistical measurement of "relative risk." 
 
This comment basically means that survival is 18.6 times more likely for a prostate cancer patient than for a patient of all non-prostate cancers aggregated together, when all other factors are held constant.
 
Does this answer your question...?
 
 
 
 
.

Jim is sick
Regular Member


Date Joined Mar 2010
Total Posts : 118
   Posted 6/3/2010 2:43 PM (GMT -6)   
Thanks el parro and Casey59. I get it but it's a difficult concept to grasp. I guess if I were 100 times more likely to die of something beside PCa then that would be great. So 19 doesn't sound so good...

Casey59, thanks for telling me about the similar conversation. Interesting reading.
48, Caucasian, 5' 8", 200lbs, 190lbs, general good health.
PSA: 8-7-09 3.22, 11-13-09 4.25.
Biopsy: 32 cores. 3 cores reveal PCa, 10%, Gleason 3+3=6, T1C.
Diagnosed: 2-12-10.
Current Treatment: Active Surveillance, next appointment Oct. 2010. No meat, no dairy, lots of fruits and vegetables.
Preferred Treatment: I just want someone to harvest my immune cells, genetically engineer them to fight my prostate cancer, and then infuse them back into my body...


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 6/3/2010 2:47 PM (GMT -6)   
It's all relative...

19X more likely to survive is a lot better than 2X more likely to survive.

Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 6/3/2010 3:12 PM (GMT -6)   
It all comes down to what I have observed the last 2+ years. These days will be looked back on as those of much over treatment and men living with quality of life side effects they should have never had to experience. The last year or more a number of studies and reports have begun to validate my opinion. But the I have to get it out of me asap!!!!! viewpoint is still alive and well with many. Everytime I see someone who has radical surgey weeks after dx with low risk numbers I just shake my head in bewilderment. Panic trumps logic and reason with still too many men, but I'm hopeful for the future. As radical mastectomies declined giving way to lumpectomies so will radical prostatectomies giving way to various targeted focal treatments or AS.
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 -
April 2009 12 of 12 Negative Biopsy
 
2/16/10 12 of 12 Negative Biopsy 
 
 
 

Post Edited (realziggy) : 6/3/2010 2:16:28 PM (GMT-6)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 6/3/2010 4:23 PM (GMT -6)   
Again a bad study. Ten year studies showing PSa control and survival are useful for men with 10 year life expectancies. This link shows a much longer window...It's an articla and I am searching for the abstract right now...

www.sciencedaily.com/releases/2010/06/100601114633.htm

The problem with AS is that when it takes a bad turn and you finally get therapy, it is definitely further along in progression than when it was detected...

You might check the Urotoday website and look at the discussion between Walsch/Klotz/ and D'Amico. You can distinguish from the reputations of these gentlemen who took the positions of surgery/AS/and radiation...Dr. Peter Carroll was the moderator and he presented a case of a 62 yo man with a PSA of 3.7ng/ml, 2/12 cores, Gleason 6, small volume, PSAD 0.09, good sexual function and minimal LUTS. The panel addressed this case.

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 6/3/2010 5:06 PM (GMT -6)   
One important note of the Klotz study. He states that prostate cancer specific survival was 97%. But he also states 32% of the pool died (by any cause) by year ten. Additionally, he counts the men who decided on treatment (30%) in his survival pool. 50% of the men that opted out of the AS pool were advanced but mostly still alive at year 10.

Back to my point. 10 year studies are too short to arrive at anything conclusive in prostate cancer. We know this because the reports in the NEJM about screening were under ten years and data gathered for longer periods show dramatically different results on screening.

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


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 314
   Posted 6/3/2010 6:06 PM (GMT -6)   

Screening and overtreatment are related but ultimately separate issues.  I eagerly await Peter Scardino's forthcoming book, but at the moment I believe:

1.  Men should get regular PSA tests beginning at age 50 (age 40 if they are in a high-risk category).  "Should" as in this is a recommended behavior, not "should" as in some kind of mandatory test or a test ordered by a physician without the prior knowledge and consent of the patient.

2.  Overtreatment is real, but at this time we really don't have enough information to  quantify it very well.  All we can say with relative certainty is that (i) the number of men whose quality of life has been needlessly diminished as a result of prostate cancer treatments is substantial, and (ii) overtreatment is in the financial interest of the medical profession as a whole, which is very happy to leverage the deeply-ingrained fears that overwhelm most men when they hear they have cancer into higher medical revenues and incomes.  Advocacy groups (and individuals) which push screening but not simultaneously better education about overtreatment are also part of the problem.  It is very possible that there will be a backlash in the future by men who learn that they may not have needed treatment in the first place.
 
3. We need to develop as quickly as possible an entire battery of new tests that will let us determine with reasonable accuracy which newly diagnosed prostate cancers probably need to be treated immediately (the minority) and which probably do not (the majority).  As always, most financial beneficiaries of the status quo will fight tooth and nail to try to prevent that from happening.
 
Zen9
 
 
 
Zen9   

Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 6/3/2010 6:30 PM (GMT -6)   
Every study you don't agree with is a bad study Tony. Like Tudpock said I think you should readily admit your bias against anything that is not radical surgery. So 10 year studies aren't long enough? In other words no study will ever be long enough for you in these times of rapid change. Besides a 10 year study of the average age of 64+ is fine for life expectancy IMHO. I believe when I was born the life expectancy at that time was just about 70 years. Now it's of course more for newborns, but for my generation it works. Bottom line for me is since the advent of PSA testing the expectant lives saved or extended have never really materialized, but radical procedures have multiplied many times over making many people rich and producing thousands of men with lower quality of lives. There's a big difference too for those who are found to have Pca in their 40s compared to those in their 60s. At times I ask myself if my Pca was never detected back in 2007 during a routine physical would my life be any worse? I think not for it would have had much less anxiety that came from that. But unlike many here I didn't panic and I refused radical life changing procedures to cure a cancer that wasn't affecting me at all and maybe never would. My treatment was an acceptable compromise but I may never really know if I needed it or not. At least it didn't affect my QOL too much other than a little bit of shrinkage and less seminal fluid. So I advise all those with low risk numbers to not panic and take your time educating yourself and then deciding.
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 -
April 2009 12 of 12 Negative Biopsy
 
2/16/10 12 of 12 Negative Biopsy 
 
 
 


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 6/3/2010 9:26 PM (GMT -6)   
Tony,
In the study you referred to most of the patients had moderatly differeniated PC and not low risk PC. It is not valid in evaluating AS, which has strict criteria relating to low risk PC only.
How do you explain the Hopkins studies that show there is no difference in cure rates of those low risk patients receiving deferred treatment vs those treated immediately. If being on AS was a dangerous as you infer there should be a vast difference in the BCFS in the deferred treatment group to the immediate treatment group.
The argument about the long term benefits of screening vs the long term benefits of treating low risk PC are not apples to apples. Screening finds high risk PC and this is what kills you. In all of the studies I have seen, progression of low risk PC (if it does progress) usually occurrs within 3 to 5 years and free of progression usually remains stable after that, so if you go 5 years without progresssion the chances of a later progression is very low; that's why it's called indolant.
I also agree that too much emphsis is put on long term results as the vast majority of reoccurrances occur within 5 years and the longer you are cancer free the less chance of a reoccurranc regardless of the treatment recieved. Yes there are some reoccurrances after 15 years, and these occur with all treatments, but these are rare and your chances of developing an unrelated cancer is much greater.

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


RCS
Veteran Member


Date Joined Dec 2009
Total Posts : 1268
   Posted 6/3/2010 9:54 PM (GMT -6)   
realziggy,

I take exception to your comment:

"But the I have to get it out of me asap!!!!! viewpoint is still alive and well with many".

I had this vewpoint ... maybe I'm not as smart as you, and I couldn't control how I felt ... but I sure as heck wouln't try to make others feel bad through ridicule.
PSA 2007 - 2.8
PSA 11/24/2008 - 7.6
Pc Dx 2/11/09; age at Dx 62
RLP 4/20/09
Biopsy - Invasive moderately differentiated prostatic andenocarconoma; G 3+3=6; PT2C; No evidence of Seminal Vesicle or Extraprostatic Involvement; Margins clear; Tumor identified in sections from prostatic apex.
Immediately continent after removal of cath.
ED - Trimix works well; viagra @ 60%
PSA - 7/31/09 <0.06
PSA - 12/1/09 <0.06
PSA - 3/29/10 <0.06
 
 
 


Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 6/4/2010 10:05 AM (GMT -6)   
RCS said...
realziggy,

I take exception to your comment:

"But the I have to get it out of me asap!!!!! viewpoint is still alive and well with many".

I had this vewpoint ... maybe I'm not as smart as you, and I couldn't control how I felt ... but I sure as heck wouln't try to make others feel bad through ridicule.


I'm not ridiculing anyone but pointing out a fact.There are still way too many men who have that panicked response upon dx. The facts are not all cancers are equal nor are all PCas. We all felt like you do initially but that's what educating ones self is all about. If my words makes a few men step back and reflect upon their situation rationally while gathering information then great. I'm sorry if you feel all men should either act quick and emotionally just because you did, or pretend that never happens.

As I've said before there are no do overs after any radical treatment, so be sure you know your diagnosis the best you can and all possible effects on your quality of life. If you find fault with that sorry, I won't apologize for rational advice.
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 -
April 2009 12 of 12 Negative Biopsy
 
2/16/10 12 of 12 Negative Biopsy 
 
 
 


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 6/4/2010 10:26 AM (GMT -6)   
RCS said...
realziggy,

I take exception to your comment:

"But the I have to get it out of me asap!!!!! viewpoint is still alive and well with many".

I had this vewpoint ... maybe I'm not as smart as you, and I couldn't control how I felt ... but I sure as heck wouln't try to make others feel bad through ridicule.

 
Hi RCS,
 
The feelings you had are very natural and very common.  I'm not speaking on behalf of realziggy, but I think (I hope) that his main point was simply to stress to others not to skip important steps in the process of moving from diagnosis to treatment.  You have seen, and participated in, recent discussion on this very topic in other recent thread with vam4710 in which you, too, encouraged taking the time for a 2nd opinion reading of biopsy slides  (http://www.healingwell.com/community/default.aspx?f=35&m=1814384&g=1814636#m1814636).
 
Here's the important lesson we should give newcomers:
After diagnosis of prostate cancer (PC) has been made and the initial shock of a life-threatening has begun to lessen, the thoughts of the patient almost invariably focus on "What should I do to get rid of this disease?"  Family and friends reinforce this mental set, as well as add to the anxiety of the situation by asking, "What are you going to do?"  The main focus in the context of a new diagnosis of PC, however, should not be on what particular treatment should I select, but rather on understanding the specific expressions of your illness, and how they lead to a rational choice of therapy.  In such a setting or context, the patient and his team act as medical detectives—to gather information—analyze—re-evaluate, and then begin to consider what to do.
 
Good advice for newcomers?
 
 
 
 
 
.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/4/2010 10:30 AM (GMT -6)   
Realziggy

Your advice was dead on right, and needs to be said. As I always say, don't shoot the messenger.

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


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 314
   Posted 6/4/2010 1:26 PM (GMT -6)   
"Realziggy

Your advice was dead on right, and needs to be said .... 

David in SC"
 
 
Agreed.
 
Zen9

Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 6/4/2010 5:50 PM (GMT -6)   
Aw shucks thanks guys. I still find it odd I've traveled from someone who had his original account banned to a wise old sage, with basically the same opinions and views. I guess time has caught up with me. With that said, the last thing I would ever want to do is ridicule people here. But in a forum where much is a stake I rather talk realistic than having to censor myself to being uber politically correct and avoid offending some one in the least.

Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4274
   Posted 6/4/2010 6:24 PM (GMT -6)   
Ziggy:
 
I didn't take your "...I have to get it out of me asap..." comment as ridicule to anyone.  Rather I thought it was only a straightforward wake up call that those initial thoughts might not be totally wise.  Actually I also thought Casey's added comments to your post were on target.  There are still men who arrive here in panic mode and ready to make a life changing decision without taking the proper steps to educate themselves before making such a decision.  I think it's a real service from any of us who suggest that they slow down a bit....be it blunt or politically correct...it is an important message.
 
And, "...wise old sage..."...LOL....but, the times they are a changin'.  I have seen a big difference in the recommendations in the 1 1/2 years I have been on this forum.  Now most of the regular or veteran members advise new members to slow down and consider all options including AS if appropriate.  That was not the general mind set of many members when I joined....maybe you were just a visionary...wait....maybe I should just call you old sage...
 
Tudpock (Jim)
Age 62, Gleason 3 + 4 = 7, T1C, PSA 4.2, 2 of 16 cores cancerous, 27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 4/10/10.  6 month PSA 1.4 and now 1 year PSA at 1.0.  My docs are "delighted"!

don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 6/5/2010 9:26 AM (GMT -6)   
Interesting thread. I may be having something akin to "buyers remorse" but in some ways I now feel that I would rather not have known that I have this disease. At the time of diagnosis I had just retired (early) and was enjoying my life free from the grind. Now every little ache or pain gives rise to dark thoughts. In the past I would just ingnore them as time catching up with me. From that perpective my QOL has diminished or at least my peace of mind. Not to mention the ED.

I did spend two months researching my options and sought second opinions from a well respected institution and doctor with good credentials in the treatment and research of PCa. At the end of the day I made the choice that seemed best for me. I am a "don't just stand there, do something" sort of person so AS would not have been for me especially after knowing the diagnosis and extent. I also do not panic easily. The problem is in the multitude of conflicting data that is available. Some of it outdated. I tried to look at things that were no older than 4 years when I did my research. Now, with my PSA rising again, I wonder would I have been just as well off to have forgone the treatment. I also wonder if the treatment has really just aggravated the disease and made it more active. To add to that research such as this that hint that no treatment is as good as slash, burn and/or poison creates confusion.

Best to all.
Don
Diagnosed 04/10/08 Age 58 at the time
Gleason 4 + 3
DRE palpable tumor on left side
100% of 12 cores positive for PCa range 35% to 85%
Bone scan clear and chest x ray clear
CT scan shows potential lymph node involvement in pelvic region
Started Casodex on May 2 and stopped on June 1, 2008
Lupron injection on May 15 and every four months for next two years
Started IMRT/IGRT on July 10, 2008. 45 treatments scheduled
First 25 to be full pelvic for a total dose of 45 Gray to lymph nodes.
Last 20 to prostate only. Total dose to prostate 81 Gray.
Completed IMRT/IGRT 09/11/08.
PSA 02/08 21.5 at diagnosis
PSA 07/08 .82 after 8 wks of hormones
PSA 10/08 .642 one month after completion of IMRT, 6 months hormone
PSA 03/09 .38 six months post radiation and nine months into hormones
PSA 06/09 .36 or .30 depending on who did the test
PSA 09/09 .33 one year after IMRT and 16 months into hormone
PSA 03/10 .32 18 months after IMRT Still on hormones


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 6/5/2010 9:53 AM (GMT -6)   
Hi Don,
With your Gleason "4" in the first spot, you would not have been eligible for Active Surveillance. You made the same choice (to take action) that I would have made.
best wishes...

el perro
Regular Member


Date Joined Mar 2010
Total Posts : 46
   Posted 6/5/2010 11:41 PM (GMT -6)   
Just wondering if folks have seen any scientific, documented downside to AS in low-risk prostate cancer? I hear the downside from my docs, but haven't seen it in any recently published studies that I've read. Most of what I've found on PubMed goes something like this one (from Beth Israel Deaconess in Boston):
www.ncbi.nlm.nih.gov/pubmed/19720918
Briefly, they say about 50% of men stay on AS through the duration of the study (no treatment at all), and of those who do get treated, the outcome statistics are no worse for having deferred their treatment by about 4 years on average. True, their follow-up is limited to something like 7.5 years, but still the mets and mortality rate is no worse at that point than in those that had immediate treatment.
I've tried to be unbiased in searching literature, but I really haven't come across that much downside with low-risk patients. I've been on AS a little over 1.5 years now and the "What if you're wrong?" feeling still lingers around. But I'm not sure that it would go away even if I had treatment either. Anyway, just looking for a dose of reality if I'm not getting it.
Dx 11/2008, Gleason 3+3
Active surveillance for now


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2218
   Posted 6/6/2010 2:45 AM (GMT -6)   
We are where we are, in an area of uncertainty, because the current PSA tests etc are all we really have to rely on.

The trouble with surveys and their statistical results is that, while they basically say something like “of these 20 guys 18 will not die of prostate cancer”, they don’t say which 18, so all 20 guys get to worry/panic.

I guess all of us, that’s all of us at HW with PCa and all men in general, would like there to be an all-singing all-dancing test that answers all our questions about this cancer. The questions being how bad is it? how bad is it going to get? and have I got the nasty version of PCa that is going to kill me before old age or whatever else does?

Hopefully in the future there will be “Son of PSA test” (I’m too thinking about what may face my 23 year-old-son in 20 years or so). This absolutely perfect test will not just tell you if you have PCa, but if it’s the slow growing “benign” variety or the “I’m very sorry to tell you” variety. So that in the future Active Surveillance will actually not be an option, guys will instead be split into two groups, one group will not need to do anything at all, while the other group will receive treatment. And treatment in the future will mean treatment to cure the cancer. (Eg via some nice method I read about that would involve injecting a virus that destroys cancer cells and not have any QOL issues.)

I’m afraid that all we can really do is be realistic/pragmatic and accept that we are where we are on the test/treatment time line and simply hope that the future brings a better deal for our sons the way we have a better deal than our grandfathers had.

Alfred
Age at Dx 48 No Family history of Prostate Cancer
Married 25 years, and I cannot thank my wife enough for her support.
April 2009: PSA 8.6 DRE: negative. Tumour in 2 out of 12 cores. Gleason 3+3.
RALP (nerve-sparing) at AVL-NKI Hospital Amsterdam on 29th July 2009. Stay 1 night.
Partial erections on while catheter still in. Catheter out on 6th Aug 2009.
Dry at night after catheter came out
Post-op Gleason 3+4. Tumour mainly in left near neck of bladder.
Left Seminal Vesicle invaded, (=T3b!)
no perineraul invasion, no vascular invasion. clear margins,
Erection 100% on 15th Aug 2009, but lots of leaking of urine
Stopped wearing pads on 21st Sept 2009
Pre-op style intercourse on 24th Oct 2009 !! No use of tablets, jabs, VED etc. but...
Nov 17th 2009 PSA = 0.1
Can still get erections okay, and almost no leaking of urine, but since December 2009 I don't have orgasms, instead I just have intense pain in place where prostate used to be.
Mar 17th 2010 PSA = 0.4!!! referred to radiation therapist
April 13th 2010 CT scan.
April 28th 2010 Started Radiation Therapy (66Gy - 33 sessions)


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 6/6/2010 4:41 AM (GMT -6)   
El Pero, I've read the same things you have and have determined that the biggest downside to AS is the inaccurracy of the initial biopsy. If you start with bad data, you can expect bad results. With what I know today and had the initial stats to go on AS, I would immediately try to reduce my biggest risks. I would send slides out for a 2nd opinion and get a color doppler targeted biopsy to confirm and to use as a base line to monitor future activity. If these still showed low risk I would unquestionable go on AS as now the risk is really small, and I have a plan to activelly monitor it, (color doppler). If it does progress the color doppler will show it and I can act with certainty. I would also change my lifestyle and eat better taking a few of the proven supplements. Given that, I see no downside, except the psychological one of living with PC, but those of us that are treated still live with this fear, The worst thing that can happen is that if you have to get treated you would have had a few years without side affects and be much more wiser and prepared for the treatment. In Business and poker the good players always look for risk reward ratios in making decisions. This is the best deal going in PC as my risk is now lower than 30%, because the biopsy inaccurracy has been eliminated, and my gain is has moved higher, from 70%, no treatment, to well above that. But the risk has little downside as the cure rate is the same if I had acted immediately, so I can wait to see the outcome with no penelty. Risk reward decisions don't get any better than than.
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


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 314
   Posted 6/6/2010 11:11 AM (GMT -6)   
Alfred,

That is a very good post.

El Perro,

I think the biggest downside of AS is controlling the terror of knowing that you have cancer inside you. And the medical profession will do everything in its power to feed that terror until you just can't control it any longer.

John T,

I would add only that one should factor in the possibility - supported by recent anecdotal evidence - that medical centers that analyze biopsies and give you your pre-treatment Gleason score and also perform surgery/radiation/brachytherapy will "overstate" your biopsy results, i.e., if they can get a "4" in there, you won't dare opt for AS and will instead choose something that makes money for them and their physicians. After all, the Gleason score is very subjective anyway.


Zen9
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