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BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 10/8/2008 6:58 PM (GMT -6)   
Hello all,
I've been off the air for a couple of weeks so I hope you are all traveling well. Had my latest PSA at the end of September and the results were <0.01 undetectable. Well that's good news. This time I had it done by a different lab. As you can see in my signature my PSA in October '07 (8 weeks post surgery) was <0.1 followed by the January '08 result of 0.1 again. Following a bit of research and suggestions here on Healingwell (regarding adjuvent therapy in relation to higher risk prognosis of Gleason 8 and focal extraprostatic extension) I decided that I would go the ultrasensitive route with future testing as well as getting feedback about additional treatment from a radiation oncologist and a medical oncologist (many thanks to TC-LasVegas for his input on this one). My GP requested the ultrasensitive PSA test in April '08 and the result came back as a standard result <0.1. I lodged a complaint that this result was not as per the request. The result was re-issued as <0.001. Wow that's really good news. At the time I thought that reading was a little unusual as I had not seen such a low level posted before. It was about June when I finally saw the oncologists.............their opinion......"yes, studies indicate that prognosis is improved for patients with higher risk factors and have adjuvent therapy over patients who do not". But--------there is a window for this therapy, normally from three to six months following surgery, and as I was now at about 12 months this window had passed. Why had my surgeon not even raised the possibility even if he thought it unwarranted? As the oncologist said, surgeons like to believe their surgery is successful and if you have adjuvent therapy you cannot be counted as a surgical success. I guess it's a little easier to roll the dice when you're not the one at a somewhat increased risk. So the opinion is monitor PSA and do salvage radiation if relapse should occur. At the radiation guy's suggestion I also had the post-surgery slides looked at by the leading lab in my state. The report was basically the same, however the Gleason score was downgraded from an 8 to a 4+3=7 (the same as the original biopsy) with the extraprostatic extension being comprised of grade 3 cells so that is a bit of a plus I suppose......better grade 3 than grade 4 poking their nose out there. The time for the next PSA came in August, again the ultrasensitive test was requested. Again the standard result of <0.1 was issued. Once again I lodged a complaint and again the result was re-issued as <0.001. Although the reading was excellent this level caused me a little disquiet and another member (I can't think who it was at the moment) also raised their eyebrows at the level. This prompted me to find out what equipment the lab used----------it is the Immulite 2000 and this has a lower detection limit of 0.003. I contacted the lab by email and asked "How did you produce a result of <0.001 on equipment whose lowest level of detection is 0.003". There was no response. Of course the actual levels are so low as to be meaningless but I had the suspicion that somebody has (1) made a mistake or (2) fudged the figures following my complaint, both of which are completely unacceptable. I took technical details of the Immulite 2000 to my GP (who has the humility to admit his knowledge of ultrasensitve testing is limited) and he queried the pathology lab on my behalf. A couple of weeks later the lab responded. The lab's explanation was that the local urologists (5 in my city, all housed within the one complex and none of whom are treating me) only required the standard report and that's why they issue them as such. At their (pathology) next monthly meeting with the local specialists the question of ultrasensitve testing was raised as a result of my complaint. The urologists held that they only wanted standard testing following surgery (in spite of the view of a lot of oncologists).............the pathologists replied that they would have to comply with the ultrasensitive requests in future as it was the lab who was on the line. They also admitted that my results were "misreported". What the hell do they mean by "misreported". Needless to say my confidence in them was now shot to pieces. I went on to find a new lab and came across the Tumour Marker Unit in the Biochemistry department at Royal Prince Alfred Hospital in Sydney. What a difference. I contacted the department and spoke to one of the scientists there. He understood my concerns and made an appointment for me to have a new test telling me to contact him when I arrived (he gave me his mobile number). When the day came this wonderful person came down and met me in the hospital lobby and escorted me to the blood collection area. He rang me directly the next day with the result of <0.01 (they record any result under two decimal places as such). I am not hung up on ultrasensitive results but I believe that things should be done correctly, particularly when you are dealing with cancer of any type. I have got to admit that my lifelong automatic respect for the medical community is seriously being challenged as a result of this journey. There are excellent professionals, mediocre professionals, and outright bad professionals out there so you have to sort the chaff from the hay. O.K my rant has ended, I have purged my frustration and am looking forward to posting an excellent score on the golf course this weekend. Spring has just started, the weather is great, my part of the world is renewing itself, so onward and upward.
Bill yeah
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 (disregarded due to lab "misreporting")
PSA August 08 <0.001 undetectable (disregarded due to lab "misreporting")
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September 08 <0.01 (new lab)

Post Edited (BillyMac) : 10/12/2008 1:04:12 AM (GMT-6)


Navy corpsman
Regular Member


Date Joined Aug 2008
Total Posts : 61
   Posted 10/9/2008 9:48 AM (GMT -6)   

Bill -

Glad to hear about your latest results.  Hope you hit 'em long and straight.

Many years ago I was a corpsman (medic) in naval special operations.  I was constantly amazed at the various quality levels of the various professionals that I worked with.  As a result I trust everyone but verify everything.  It sounds cynical, I take very few people on this planet at their word.

- John


Age:  44
We have a family history of PCa.  My Dad and uncle died from it at 65 and 53. My PSA velocity increased in the last 2 years and I had to talk my GP into refering me to a urologist.
Biopsy results:  5 of 11 cores positive, all 30%. Gleason 6. T1c. PSA 2.53  Date of biopsy 15MAY08.
Open RRP at Johns Hopkins with Dr. Partin on 09JUL08.
Pathology report:  Gleason 6, pT2, neg. margins, 0 lymph node and seminal vessical, organ confined, I lost 1 nerve bundle and 22 lymph nodes.
As of today, about a month after surgery, I feel at about 80%. Urinary control seems to be improving. Little Elvis has taken a nap and has not awakened yet. I hope when he wakes up he is well rested because he is going to get one heck of a workout.
 
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 10/9/2008 10:58 AM (GMT -6)   
Bill,
Your labs look great. On the RT thing, I don't know they can base ther claim of 3 to 6 months on any valid study, except to say that is the window used at Harvard and Stanford in their controlled study that showed a significant improvement in controlling the disease. What I am saying is that there is no study out there yet that compares using RT 12 months after RP and prior to biochemical relapse, thus no one knows if it would produce the same results as the Stanford study. Just a thought. Perhaps you might ask that question of your RO. I just know it looks and sounds right that if you hit it before it spreads, you will get better results.

On the PSA testing, yea I can understand that frustration and tell you that's why I stuck with the Bayer Assay. <0.1 is fine with me. I probably would not make a salvage treatment decision until at least 0.4 anyway. I would rather understand the doubling rate based on the larger numbers. So I guess, I have heard it here several times, those "ultrafines" sure do cause quite a few concerns regularly.

I would rather worry about my putting skills.

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (September 17 '08): <0.1 ~ Undetectable!
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 10/9/2008 5:13 PM (GMT -6)   
Tony,
I too am at a loss to understand the reasoning behind specifying a window regarding the timing of adjuvent therapy treatment via radiation. I cannot see that there would be any difference in having additional treatment at 3 months or 12 months or even 24 months if the idea is a preemptive strike before a clear sign of biochemical relapse has actually occurred. Be it adjuvent or salvage therapy the aim is to eliminate any rogue cells close to the prostate area and missed by surgery. Salvage therapy is the same process but occurs after the horse has bolted, so to speak. I can only assume therefore that the thinking must be along the lines of the further you are out from surgery with no indication of relapse, the higher the odds of relapse not occurring at all so why subject yourself to additional and perhaps unnecessary treatment. As I mentioned in another post I clearly remember seeing a report that said relapse after an extended period of undetectables was more likely to be located in the prostate bed area and so could be radiated at a later date with a reasonable expectation of success. But the longer the cells (even at very low and undetectable volume) are sitting quietly in the prostate bed the longer they have access to your lymphatic and vascular system. I shall have to give this a lot more thought.
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 (disregarded due to lab "misreporting")
PSA August 08 <0.001 undetectable (disregarded due to lab "misreporting")
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September 08 <0.01 (new lab)


Tim G
Veteran Member


Date Joined Jul 2006
Total Posts : 2299
   Posted 10/10/2008 9:07 AM (GMT -6)   
Congratulations on your PSA scores!  Your persistence has paid off in giving you the answers you needed. Take care and be well...Tim
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 


creed_three
Veteran Member


Date Joined Jan 2007
Total Posts : 762
   Posted 10/11/2008 6:51 PM (GMT -6)   
Hi Bill,
 
Thanks for all this important info. I have been trying for 18 months to understand related things. ie.  why my husband's results are always reported as in comparison to his (biological) age, not his post op Pca status at all. I also have great concerns that his pca status is never on the referral form.  Although PSA's are (for him) reported as ultrsensitive by the same lab (and acceptable to us so far), we are unclear on what may or may not, be considered a rise for him by any of his doctors, and what the figure might be actually reported to etc (at what point equipment rounding to 2 decimals etc).  At the moment, if it rose significantly, it may not even be noted according to the lab report we are currently using (but obviously would be noted by the  doctors viewing the report). Still I think this is inaccurate,  and that his results should be reported at lab levels, right down to the level at which adjunct might be necessary (whatever that is) in light of his individual treatment for Pca, not just a random standard range report of men without a history of Pca. Sorry about my wording - it is hard to explain clearly. The lab does not report the ultrasensitive ranges even though they do this ultra test. Seems plain stupid to me!
 
We are at the same (overall) treatment centre as you (or were - they have ditched us now back to GP only,  after the yearly post op visit!),  so I kind of hang off all your posts!! (Hubby cannot use a computer so I relay relevant info). I will download all your experiences and info,  and ask the GP currently organising the referral for the next PSA this week,  to read it all - so she has a clearer picture of our concerns,  and she may then put the referral details on the request form, as we have just changed doctors for on-going management. We might also be able to get some info from this lab as to their process and change centres if not happy with explanation.  Many thanks once again therefore. You have highlighted ALL my questions and concerns too (although my husband's Pca was contained within prostate area),  and answered other concerns through your great research. We will start with the GP and go from there. I never thought of writing to the lab, but such a good idea. Thanks for sharing all this re. clarification of the ultra sensitive testing overall and the inconsistencies in reporting.   I know it does not matter to some people, and that's fine, but it does matter to us, so thanks again. Yes, Spring is here in Australia,  so have a good one. Like you, we are in good health so live it up, but keep on questioning to stay that way!!
cheers to you and yours   wink .
Creed_three
 
Husband 50 yrs (49 years at diagnosis)
PSA (2002) 2.1.  PSA (2006) 3.5.  1 x (5%) core of 12 positive at biopsy. 11 cores negative. Open Radical Prostatectomy with nerve sparing April 2007. Gleeson 3 + 4 = 7.   Undetectable PSA since Surgery. 
June 2007: 0.01; Oct 2007: 0.02; April 2008:0.02.
 


CaPCa
Regular Member


Date Joined Aug 2007
Total Posts : 118
   Posted 10/11/2008 10:42 PM (GMT -6)   

Bill,

It's good to hear your PSA is still "undetectable". As I have posted before, I have also had a few issues with the reporting of my PSA results, but not near the level of issues you have had. Regarding the "window" of adjuvant/salvage therapy, I also see no logic to tying the window to the date of surgery. It's not as if the cancer cells were "spilled" into the prostate bed at the time of surgery; if there are some outside the prostate then they were probably there before the surgery. Dr. Walsh's book mentions that the longer time until a recurrence actually improves the probability that salvage therapy will work. I think the reason given was that this implies a less aggressive cancer and hence more likely to be killed by radiation.

I am coming up on my one year PSA test. As I have mentioned before, I am strongly leaning toward switching from the ultrasensitive to the standard PSA test. Based on my very good final pathology and Gleason score, I statistically have only a 1% chance of recurrence over ten years. I don't want to risk giving this dreaded disease the upper hand, but I know that my personality will cause me to fret over the smallest bit of test noise to the upside. However, I don't want to unnecessarily irradiate my terrifically functioning nerve bundles. My "compromise" for this change is that I am thinking about getting tested every six months for the first five years, as opposed to yearly. That way, if I do reach 0.1, I should know this earlier than otherwise. One thing I do potentially lose is PSA velocity information that could be better gleaned from ultrasensitive testing after surgery. In my case, however, I have a good bit of data regarding my PSA velocity prior to surgery (low). My assumption here is that the aggressiveness of any cells outside the prostate would be the same as those found inside and hence should produce the same velocity. This is just my assumption, though, and is not based on anything I have read or heard.


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 10/12/2008 1:51 AM (GMT -6)   
Creed Three,
The problem is the whole process is automated. Sample goes in, is analysed automatically, and the computer generates the report. That report gives a reading and automatically quotes the general PSA range for the particular age group the patient is in. When my doctor wrote out the pathology request and did not mention that it was from a prostatectomy patient I simply wrote "Post-Prostatectomy" in the clinical notes section on the request. Sort of hoping the technician will note that it's very low and pay a bit more attention to the result. I don't think it makes the slightest bit of difference to the report though............the computer simply analyzes and produces a number based on that analysis and adds the pro-forma words to all reports. My insistence on the ultra-sensitive result is based on practical needs as much as medical. I run a small business (one-man) and in order to compete with the bigger guys I have to buy in bulk, often shelling out quite a bit of money for stock that can take me quite a long time to turn over. Naturally at the first sign of possible relapse, including at the ultra-sensitive level, and facing further treatment and perhaps complications, I would not make these substantial purchases, but would rather make plans for my retirement.
"You see Doc, I've got a life outside of PCa".
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 (disregarded due to lab "misreporting")
PSA August 08 <0.001 undetectable (disregarded due to lab "misreporting")
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September 08 <0.01 (new lab)

Post Edited (BillyMac) : 10/12/2008 1:57:10 AM (GMT-6)

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