Good news but why must I fight them?

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BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 8/4/2008 12:51 AM (GMT -6)   
It was on again this PSA test. I first learned of the ultra sensitive PSA test on this forum about six months ago and subsequently did a bit of research on it. Following my op in August of 2007, all the subsequent test results up to and including January 2008 were shown as <0.1 undetectable. No doctor or specialist including the surgeon mentioned the existance of an ultrasensitive test or its pros or cons. Based on what I learned here at the end of March I asked my G.P. to request an ultra sensitive result on the blood test. He in all honesty admitted he did not know of the ultrasensitive test but ordered it for me anyway. Test results came back ............. <0.1 undetectable. Good news indeed but can't they read? I have posted before on the forum about the back and forth exchange that took place with the pathology lab and their failure to show the 3rd Gen test result which was clearly requested. Answers of "you don't need it" and "we are following reporting protocols" were proffered. Of course I had to initially argue with the first line of defense (telephone receptionist), who when I would not accept her offerings (all the while she had no idea of what she was talking about) then passed me to the complaints department where we went through the whole process again. With me still not being a happy little vegemite she surprisingly passed me to the lab pathologist and we also conducted a little to and fro. The final upshot....................they actually run all PSA tests on generation 3 equipment (and have done for over 5 years) which produces a 3 decimal place result which, because of convention, they report only to one decimal place. Pre-prostatectomy or post-prostatectomy, regardless of the need, you're getting the same result boy so be happy with it. Anyway, my obvious displeasure at the time had the desired effect and they went back and checked the records for the complete reading and reissued the report ............ <.001 undetectable... oh happy days. That was March. Fast forward to August's test. Ultrasensitive test requested and this time high-lighted ...............yep you guessed it .......result <0.1 undetectable. Now I was really cranky. Into the fray again. Exactly the same scenario, exactly the same defense and excuse making, battling through the same line of command. I even browbeat the pathologist with information on the patients need to establish his post-prostatectomy nadir level of PSA for future reference and had the report redone and re-issued ........... <.001 undetectable. Happy days again although somewhat tainted by this battle. I have prepared a letter for the lab and will include the following for them to read in order that they gain a proper appreciation of a PCa patients concerns.

www.prostate-cancer.org/education/preclin/McDermed_Using_PSA_Intelligently2.html

Extract from the above link
Expected PSA Levels After RP
PSA levels that are measured three or more weeks following a successful RP should be zero, or at least very close to zero, and stable. The presence of PSA in the blood after RP indicates a failure to remove the tumor completely, and the reappearance of PSA at a later date indicates tumor recurrence. Exceptions to this include cases where unilateral or bilateral nerve-sparing surgery or laparoscopic procedures leave benign tissue behind. In such patients, PSA levels will often be detectable using a third-generation PSA test, albeit at a very low concentration.

The functional sensitivity of the first and second-generation PSA assays significantly limits their use for early post-operative detection of surgical failure in most cases. However, a number of clinical studies have been published using PSA assays with third-generation sensitivity post-RP. These studies have clearly established the value of these highly sensitive assays for detecting early prostate cancer progression following RP. 18,19,20,21 In a landmark study by Witherspoon et al, DPC’s IMMULITE Third Generation PSA assay appeared to (1) identify men with apparently organ-confined prostate cancer destined to fail surgery and (2) provide an average 18-month lead time in detecting disease progression compared to a conventional PSA assay

1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07----4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.1 undetectable


sterd82
Regular Member


Date Joined Sep 2006
Total Posts : 187
   Posted 8/4/2008 9:56 AM (GMT -6)   

Billymac,

Here's some unsolicited advice you probably won't like --- let it go.  My PSA bounced around between .04 and .09 for five months post-op.   I wasn't going to do radiation that quickly anyways --- I did AFTER it shot up to .24 at month 6.

I think the main idea is to determine 2 things: 1) Are you going to do salvage/adjuvant  radiation REGARDLESS of PSA? (you didn't have positive margins, so I don't know why you would)   2)  If you are looking for a PSA number to initiate treatment, what is that number?  Are you REALLY going to do salvage radiation below .1?  Some say yes, but the threshold I found to be the most common out there was .2.   My radiation oncologist told me he'd recommend treatment on me because of my age, pre-surgery PSA and pathology --- he didn't put a whole lot of emphasis on the PSA at that point.

If you're really concerned (which is a good thing), why not consult with a radiation onocologist to see how much stock they put in the ultra-sensative PSA, and at what point they'd wat to treat you?   If you come out with a firm conviction that PSA levels below .1  MATTER, then continue to press for it.  I just know from experience those little shifts in the numbers will drive you nuts.  And they CAN boucne around a fair amount and still not mean anything.  GOOD LUCK!!!


Sterd82
Age 47 - pre-surgery PSA 39
Open Radical Prostatectomy 6/9/2006
Pathological Stage T3a, Positive Surgical Margin
Gleason 3+4
PSA rose to .24 in November of 2006
6 month hormone therapy initiated December 1. 2006
36 sessions of IMRT Ended Feb 1, 2007
PSA as of May 25, 2007 undetectable
PSA as of November 29, 2007 undetectable
PSA as of May 14, 2008 undetectable
Next PSA November of 2008


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 8/4/2008 9:56 AM (GMT -6)   
I feel your frustration. Hopefully the letter will help! I think you should change your signature to include: <.001 :)
Father's Age 62 (now 63)
Original Gleason 3+4=7, Post-Op Gleason- 4+3=7,
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin, One positive node. T3a N1 M0.
Bone Scan/CT Negative (Sept. 10, 2007)
Oct. 17 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07, Lupron beg. Dec 03, 2007 2 yrs
Radiation March 03-April 22, 2008- 8 weeks 5x a week
July 2, 08 PSA <.02
Praying for a cured dad.

Co-Moderator Prostate Cancer Forum


Frank1205
Regular Member


Date Joined Feb 2008
Total Posts : 308
   Posted 8/4/2008 12:53 PM (GMT -6)   

Billy Mac,

I too went through something like you and was very frustrated.  My first test was generation I and second was generation II.  I asked about generation III test and all three of my Doc's said not neccasary.  They all said Gen I not good enough but Gen II does not make a difference in treatment options or recomendations. All off my tests from here on out are to be Gen II.

All the best,

 

Frank

 

 


Diagnosed 01-08-08 @ 53 years old 
DRE normal - Bouncing PSA for 5 or more years a high of 10
2004 Biospy negative - 2008 Biopsy positive (01-08-08)
10 cores, 1 positive and at 1% of that one core
Current PSA 6 - Bone and Ct scans negative
clinicaly Staged at T1C - Gleason 3+3 = 6
Robotic Da Vinci performed March 27th, 2008
University of Chicago,5 hour surgery , 3 hour recovery
Unexpected Cardiac issues appear and disappear?
Hospital stay 30 hours - Catheter out in 7 days  normaly expected leakage - Erectile funtion back on line 9 days then off again and then back again at 4 months. Better with Viagra
Post Pathology T2C, Gleason 7, 10 % of both portions of prostate, Seminal vessels clear, fat tissue clear,Tumor on top of prostate. 1 positve margin measureing less than .5 ml at urethra and bladder..
Six week PSA < 0.1 Ya Ba Da Ba Dooooooooooo.  Put a steak on the grill Wilma!!!!
4 month PSA <.05 Gen II test.  Urologist wants to hold off on Radiation and watch PSA closely.
Leaning strongly to surveilance with PSA before Radiation. Doc says 50/50 chance of PSA re-occurence.  What happened to 90%.
Next PSA in October..
 
 
 


Tim G
Veteran Member


Date Joined Jul 2006
Total Posts : 2299
   Posted 8/4/2008 1:07 PM (GMT -6)   
I agree that you have a right and should be given the test results to the degree of test sensitivity.  I have personally opted to have the less sensitive, older test because I do not plan to do anything until the PSA is greater than 0.1.  There is a swirl of controversy among prostate cancer experts about the value of results below 0.1.  Is it noise or is it a real cause for action?



Age 59  PSA quadrupled in 1 yr (0.6 to 2.5) 
DRE neg  1 of 12 biopsies pos (< 5%) 
Open surgery June 2006 
Organ confined pT2a  Gleason 5   
Cancer-free for 2 years  PSA's undetectable 


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 8/4/2008 9:12 PM (GMT -6)   
sterd82 said...
Billymac,

Here's some unsolicited advice you probably won't like --- let it go. My PSA bounced around between .04 and .09 for five months post-op. I wasn't going to do radiation that quickly anyways --- I did AFTER it shot up to .24 at month 6.

I think the main idea is to determine 2 things: 1) Are you going to do salvage/adjuvant radiation REGARDLESS of PSA? (you didn't have positive margins, so I don't know why you would) 2) If you are looking for a PSA number to initiate treatment, what is that number? Are you REALLY going to do salvage radiation below .1? Some say yes, but the threshold I found to be the most common out there was .2. My radiation oncologist told me he'd recommend treatment on me because of my age, pre-surgery PSA and pathology --- he didn't put a whole lot of emphasis on the PSA at that point.

If you're really concerned (which is a good thing), why not consult with a radiation onocologist to see how much stock they put in the ultra-sensative PSA, and at what point they'd wat to treat you? If you come out with a firm conviction that PSA levels below .1 MATTER, then continue to press for it. I just know from experience those little shifts in the numbers will drive you nuts. And they CAN boucne around a fair amount and still not mean anything. GOOD LUCK!!!


I always take advice on board, unsolicited or otherwise tongue I do understand completely what you are saying and the reasons for it. However my thinking is along these lines. I am trying to establish what the nadir level of my PSA is following surgery. I see the logic in the content of the links I posted. In my case with a Gleason 8, fairly extensive gland involvement and despite a relatively low pre-surgery PSA level I am a candidate for later relapse. I am optimistic but am also a realist. If I see a rising PSA trend then I will initiate adjuvent action. But what is a rising trend. If I have a nadir reading of say .005 that rises to .008 and then retreats to .006 then I see PSA simply bouncing around albeit at very low (undetectable) levels. However if I see a nadir of .005 then .008 then .012 then .02 I now see a rising PSA level probably indicative of early relapse. The rise from practically 0 to low detectable amounts would be statistically indicitive of (in my case) probable prostate bed growth in the area of my focal extension. Gleason grade 4 tumour releases 2 ng of PSA per cu. cm. of tissue so do I take action when the tumour may be 1/20 of a cc. (PSA 0.1) or when the tumour is 1/200 of a cc (clear ultrasensitive test consistant rise from 0 to .01). My feeling is as soon as I see a clearly rising pattern no matter the level I will seek to have adjuvent therapy.
Bill
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07----4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.001 undetectable
PSA August 08 <.001 undetectable

Post Edited (BillyMac) : 8/4/2008 9:17:19 PM (GMT-6)


sterd82
Regular Member


Date Joined Sep 2006
Total Posts : 187
   Posted 8/5/2008 6:02 AM (GMT -6)   
Billymac,

You've got a good point. It IS kind of strange they're actually using the ultra-sensative test but not reporting it as such. I'd still suggest consulting with a really good radiology oncologist to get their take on it. They might even do ultra sensitive PSA testing at their office, and report it in the format you're looking for. With clean margins (or even WITH positive margins) , its a crap shoot if you have a PSA relapse if it localized or systematic (which radiation won't help).... If its systematic, its a whole different time table as to when to start treatment.

What fun this stuff is, huh?
Sterd82
Age 47 - pre-surgery PSA 39
Open Radical Prostatectomy 6/9/2006
Pathological Stage T3a, Positive Surgical Margin
Gleason 3+4
PSA rose to .24 in November of 2006
6 month hormone therapy initiated December 1. 2006
36 sessions of IMRT Ended Feb 1, 2007
PSA as of May 25, 2007 undetectable
PSA as of November 29, 2007 undetectable
PSA as of May 14, 2008 undetectable
Next PSA November of 2008


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 8/5/2008 7:30 AM (GMT -6)   
sterd82 . Sound advice. I actually have an appointment with a local noted radiation oncologist on the thirteenth of this month to get his opinion. I also had a consultation with a medical oncologist a number of weeks back and to discuss this very topic (timing of adjuvent treatment if required.) The radiation Dr's opinion will be interesting.
Bill
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07----4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.001 undetectable
PSA August 08 <.001 undetectable

Every time I see an adult on a bicycle I no longer despair for the human race.

H.G.Wells


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 8/5/2008 10:13 AM (GMT -6)   
Love all those 0's! :)
Father's Age 62 (now 63)
Original Gleason 3+4=7, Post-Op Gleason- 4+3=7,
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin, One positive node. T3a N1 M0.
Bone Scan/CT Negative (Sept. 10, 2007)
Oct. 17 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07, Lupron beg. Dec 03, 2007 2 yrs
Radiation March 03-April 22, 2008- 8 weeks 5x a week
July 2, 08 PSA <.02
Praying for a cured dad.

Co-Moderator Prostate Cancer Forum


CaPCa
Regular Member


Date Joined Aug 2007
Total Posts : 118
   Posted 8/6/2008 10:15 PM (GMT -6)   
I feel your pain. I recently been fighting with PSA statistics myself. However, in my case, I originally requested the "standard" PSA test and got the ultra-sensitive variety instead. Now I have to fret over possible fluctuations due to background noise. Before surgery while I was fighting a rising PSA, a nurse actually misquoted a PSA test number over the phone. Frankly, there is a lot of sloppiness around the reporting of PSA numbers. I have heard before about doctor's offices that use the 3rd generation assay yet report a rounded up number, so I would not be too surprised. You mention a "<.001" result. Are there any assays that can detect to that low of a level? The lowest I have heard was "<.003" for the DPC assay but I could be wrong. You may want to question them about that number as well. Regardless, you would be universally considered as having an "undetectable" PSA level.
Age:45 (44 when diagnosed)
Father diagnosed and cured at age 52.
08/21/07: Diagnosed with T1c cancer
1 of 12 biopsy cores positive; 10% tissue
Gleason score: 3+3=6
PSA level prior to biopsy: 4.3 (velocity < 0.4ng/ml)
10/19/07: da Vinci prostatectomy by Dr. Vipul Patel
              Difficult surgery due to prostate inflammation.
              Both nerve bundles spared.
              Spongy erections began within 24hrs of surgery!
10/24/07: Catheter out; down to 1 Serenity pad/day next day.
              Final pathology: neg margins, no capsular penetration,
              Gleason 3+3=6, 5% tumor involvement, multi-focal.
11/04/07  First usable erection with Cialis
11/22/07  Thanksgiving - Bye-bye, pads
01/17/08  First post-surgery PSA result: < 0.008 ng/ml
03/17/08  Erection quality mostly back to pre-surgery levels with Cialis;
              have not tried without meds yet.
04/23/08  Second post-surgery PSA result: < 0.008 ng/ml
07/30/08  Third PSA: 0.01 ng/ml
 


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 8/7/2008 8:09 AM (GMT -6)   
CaPCA said...
I feel your pain. I recently been fighting with PSA statistics myself. However, in my case, I originally requested the "standard" PSA test and got the ultra-sensitive variety instead. Now I have to fret over possible fluctuations due to background noise. Before surgery while I was fighting a rising PSA, a nurse actually misquoted a PSA test number over the phone. Frankly, there is a lot of sloppiness around the reporting of PSA numbers. I have heard before about doctor's offices that use the 3rd generation assay yet report a rounded up number, so I would not be too surprised. You mention a "<.001" result. Are there any assays that can detect to that low of a level? The lowest I have heard was "<.003" for the DPC assay but I could be wrong. You may want to question them about that number as well. Regardless, you would be universally considered as having an "undetectable" PSA level.


It is interesting that you should raise the question regarding the <0.001 figure. This actually raised my eyebrows as well and I questioned the veracity of their number in my letter to the pathology service. All the various ultra sensitive equipment I have seen mentioned list a lower level detection limit of .003 ng/ml. I should hate to think that when I objected to the initial standard test result I received a revised result simply consisting of some nameless person inserting a couple of zeros where required in order to produce an ultra sensitive answer. I know they use the generation three equipment so it will be interesting to see their response to my complaint and query.
Bill
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07----4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.001 undetectable
PSA August 08 <.001 undetectable


Every time I see an adult on a bicycle I no longer despair for the human race.
H.G.Wells

Post Edited (BillyMac) : 8/7/2008 8:14:41 AM (GMT-6)

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