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Treatment for PSA-Negative (low PSA relative to tumor volume) Prostate Cancer

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Posted 10/27/2009 4:27 PM (GMT 0)
Dan,
Good to hear from you. Sounds like you are on a full program. Please keep us updated on your situation. I'd like your thoughts on the Dattoli center; I've heard a lot of good things about them and would just like a confirmation from an experienced patient.
JohnT
Posted 10/27/2009 8:39 PM (GMT 0)
You guys got me worried now. My volume was 40% of gland, with a psa of 4.7, gleason 7. Does that mean I should get a pap because of the low psa and high tumor volume?
Posted 10/28/2009 2:34 AM (GMT 0)
John T,
My pathology report indicates the weight of the prostate (57 g) rather than the volume. My PSA was 3.9 prior to surgery and the cancer was 10-20%. I'm not sure how the volume in this case correlates to the pre-surgery PSA
Posted 10/28/2009 3:35 AM (GMT 0)
Ed,
Gleason 8s and 9s throw off very little psa; so having a high Gleason and low psa is very normal. In Dan's case he had a high volume gleason 6 tumor that generated very little psa; this was suspicious.
A certain Gleason score will generate a standard amount of psa for every cc of tumor volume. This is how oncologists calculate tumor volume without having a scan to actually measure volume. They subtract the normal psa from the prostate (.066 X vol in cc). What is left is the tumor generated PSA. Using the gleason score it easy to calculate the tumor volume. It's simple math.
In my case it was the exact opposite; I was 1st diagonsed with a small volume g6 tumor and my oncologist calculated, with the size of my prostate, my psa should be 6.6 and it was 40, so he knew that something else was causing the 33 extra psa and he just had to find it. He taught me that the numbers have to corrolate in order to make a correct DX. If they don't correlate you have to keep investigating untill you find out why. The formulas are pretty simple and he just plugs them into his laptop. When I saw Dr Bahn for my color doppler that was the 1st thing he did and came up with the same numbers and said something was off. He knew he had to look in the transition zone to find a tumor that would generate that much psa. Both doctors knew there were only two things that could generate 33ngl more psa than expected, a large transition zone tumor or lymphnode mets.
I'm amazed that more doctors don't use this, as it is a very easy way to spot problems or a missed initial diagnosis and it takes about 30 seconds. Strum has a section in his book that gives the formulas for each gleason score. I'm glad that Dan recognized this and didn't listen to his doctor's when they told him not to worry. It shows that you have to be your own advocate, and when things don't correlate keep looking until they do.
JT
Posted 10/28/2009 2:42 PM (GMT 0)
When my PSA went from 1.3 to 2.3 in about 13 months, I was concerned that I might have a small, but aggressive tumor.  When the biopsy suggested and surgery confirmed that I had a large tumor, I knew something didn't seem right (and John T also noted this incongruity).

The first literature I found explored the ratio of PSA to PAP.  In general, when PSA/PAP < 3, the patient's prognosis was much worse than when the PSA/PAP ratio was > 3.  As I recall, there was also something published about when PAP was greater than PSA; this "inversion" was a very bad indiction of disease progression.  (The apparent exception to all this is when the PSA has dropped to very low levels immediately after treatment.)

Since PAP is a measure of PC tumor burden, I started looking for other, more recent research.  One fascinating study I found was a retrospective study of prostatectomy patients from four hospitals in Japan.  The researchers stratified the post-surgery patients into 3 group by PSA/total tumor volume.  (Since most surgery pathology analysis provides tumor size as a percentage of gland, generating a tumor volume in cc's seems a little tricky, although there is a published formula available.)  I don't have this study with me, and I had to pay $32 for access to it, but it is worth getting.

This Japanese study discovered that when pre-operative PSA level divided by total tumor volume (PSA/TTV) was less than 0.7 ng/cc, the patient's prognosis was grim.  Out of about 268 prostatectomy patients, only 16 fell into this strata, but a large proportion of these men exhibited quick biochemical failure, systemic progression of disease, and death.  Since metastatic prostate cance is far less common in Japan than the US, these findings are especially troubling to me since my estimated ratio of PSA/TTV (2.3 ng/12 cc) is below 0.2 ng/cc (at the very bottom of this strata).

I am a research statistician, and I must admit that some of results do not appear to be entirely consistent.  I have requested that be allowed to review these data, but I have not heard from the authors.

Another frightening retrospective study was conducted by Allison Birtle in Great Britian of men whose tumor burden was greatly disproportionate to their PSA.  These were all men with advanced disease, but with PSAs that were below 10 ng (a I recall.  Disease progression was very rapid and the effectiveness of ADT was short-lived.  Dr Birtle termed this type of PC as PSA-negative disease.

For having such a "bad" PSA/TTV ratio, my Gleason Score of 3 (90%) + 4 (10%) = 7 does not seem so aggressive.  I do appear to have two pelvic lymph node mets and some suspicious vascularization in the prostatic bed.  I hope to get the results of DNA Ploidy in the next week or so.  I have been on ADT3 for over two months and will commence IMRT at Dattoli in about a month.

Dan 

Posted 10/28/2009 8:05 PM (GMT 0)
Dan:
Cannot tell you how happy I am to have found someone as persistent as I am. My father only had psa =1.2 (.6 actual, so doubled for proscar usage), but Gleason 3 +4 (90% - 3; 10% - 4), his prostate was 34 g, with 2 or 5% tumor, depending on which "expert opinion" is correct. All post-surgical path reports good (except PNI present). The low psa has always bothered me. His CEA, NSE, and CGA are within normal (CEA very slightly elevated - but we know there are many benign reasons for this).

A few of favors to ask you:

1) Would you please forward a) the Japanese study to me, as well as, b) the calculation to convert tumor volume from gms to cc.

2) Please stay in touch, with your progress. Your communication of this information can only help to understand the parts of this disease that so little is still known! I know you will beat this!!!

3) Wondering about the cost of the Combidex work-up in Holland.  If you don't mind.

Thank you from the bottom of my heart! Stay the path. You are an inspiration.

I want to be: -Laughingagain

Post Edited (laughingagain) : 10/28/2009 2:45:07 PM (GMT-6)

Posted 10/28/2009 9:25 PM (GMT 0)

Cost of the Combidex is 1900 euros or about $2500 US. Hotels are about $150 and travel cost vary; I used miles to get there so It cost me nothing. There is about a 60 day wait.

If you need more info e mail me.

JohnT

Posted 10/29/2009 2:34 PM (GMT 0)
Dear Laughingagain,

I'm don't know how to send you the Japanese study using HealingWell.com.  If I had your email address, I guess I could send it to you.  The title is: "Prostate-specific Antigen Adjusted for Total Prostatic Tumor Volume as a Predictor for Outcome after Radical Prostatectomy" by N. Hayashi, et. al. (published in Prostate Cancer and Prostate Diseases, 2007, 10, 60-65).

I really wish that I could get the raw data from this retrospective analysis of 268 post-prostatectomy patients, but my attempts to communicate with the authors have been futile.  There are some apparent contradictions between the results as stated in the report and the summary statistics presented in the tables and graphs.  Still, this study is most intriguing.

From what you say in your posting, your father's disease may not actually fall into the most dire category.  If his tumor was only 2%-5% of his gland volume, it may have been less than 1 cc, so that an adjusted PSA of 1.2 ng/dL would not be so unusually low. 

I don't have the article wih me that generated the equation for converting tumor percentage to tumor volume, but I think you can probably find it using Google and a few key words.  The one thing I do recall is that there is a lot a variation in the calculation of tumor volume using this equation so that a reliable or precise calculation of any specific tumor volume is not likely.  You can, at least, get a general idea of the relationship.

When I underwent Combidex (Sinerem) screening in Holland (Sept 28-29), the total cost came to about $3500US and it included both a CT abdomin scan and the Combidex MRI (which were to be fused).  I don't know if every patient requires both these scans, but I was told that I did.  I would be glad to send you the video of the images of my pelvic area that Dr. Barentsz sent me, so you might get an idea of what size lesions can be detectable.  Nijmegen is a charming small city, and Dr. Barentsz and his staff are most knowledgeable and friendly. 

Dan

Posted 10/29/2009 3:05 PM (GMT 0)
JohnT,

At this point, I have only been down to Sarasota to the Dattoli Cancer center one time (about 6 weeks ago for initial testing).  My preferrence was to get my IMRT done locally (Washington, DC area).  I had met with a local radiation oncologist, Dr. Steven Greco, and he appeared most capable, but Dr. Myers was emphatic that the Dattoli center was THE place to go, so I am following "Snuffy's" advice. 

From my one visit to Dattoli, I did note a few things that may be important.  At Dattoli, all aspects of evaluation, diagnosis and surveilance were well integrated at a single location, so that it was easy to conduct blood tests, color doppler TRUS, and bone scans, etc. in a very efficient manner.  It seemed that everyone was working well together to produce the BIG picture of my disease status.  Everyone was physically in the same place, which probably is a plus.

Dr. Myers also seems to be convinced that Dr. Sorace is exceptionally good with IMRT, so his guidance in radiation is likely to result in minimal collateral damage.  I am now scheduled to start radiation treatment in early Decemer and get a total of 74 Grays to my entire pelvic area over 8-9 weeks.  The ADT3 which I started over 2 months ago finally has depressed my testosterone to castrate levels (13 ng two weeks ago).  More blood tests will be taken this afternoon.  So far, I am tolerating the ADT3 pretty well; just feeling tired and a little "out of it".

I'll let you know how things go at Dattoli.

Dan

Posted 10/29/2009 4:01 PM (GMT 0)
Dan,
That's good info. I didn't know if Dattoli was mostly marketing hype or real. Nice to see someone like Myers recommend them.
JT
Posted 10/29/2009 9:51 PM (GMT 0)
Laughing,
Human tissue has almost exactly the same density as water (bones excepted) so it is a direct conversion i.e. 50ccs = 50 grams and vice versa.
Bill
Posted 10/31/2009 12:42 AM (GMT 0)
I am somewhat confused by all of this interest in tumor volume. I have read study after study from Johns Hopkins stating that measuring tumor volume is very difficult. It is very time consuming and grossly inaccurate. They do not even report a percentage of tumor volume due to this. There has also been numerous studies stating that tumor volume is not a signifigant predictor of progression. There have also been studies that say it is. So the answer is in the wind.
Posted 10/31/2009 2:40 AM (GMT 0)
Tumor volume does predict progression in the higher gleason grade as there is more cell population that is able to escape into the blood stream. It is also important in radiaton as a larger tumor requires a higher dose. Larger tumors are better treated with a combination of seeds and IMRT in order to get a higher dose to the prostate.
It is also important in Active survelience where more than 3 cores or cores over 50% are not good candidates for AS.
Tumor volume that doesn't corolate with gleason and PSA is a main indicator of a PC varient.
Knowing your tumor volume BEFORE treatment is very valuable. Probably not all that valuable after treatment except in identifying PC varients.
JT
Posted 12/8/2009 9:53 PM (GMT 0)

Dan:

Thank you for the Combidex information.  Sorry I did not respond sooner.  I am still perplexed on how to proceed with my dad regarding the possible "psa negative" cancer:

My Dad's post surgical tumor volume was .68 cm3 or 1.7 cm3, depending on who you believe.  Additionally, dad's use of Proscar for 2 1/2 years prior to his diagnosis muddies his true psa.  Using proscar during this time, his psas fluctuated up and down between .5 and .9.    He did have a psa of 1.9 in 5/04 just prior to starting proscar.  Perhaps this is the psa we should use for the psa/tumor volume ratio calculation?!  His last psa prior to surgery was a full two months prior (=.6), so we don't have a psa to correlate at the exact time of his surgery.  I know the proscar adjustment is to double the psa, but I also know every human is different and this is just an approximation.  Perhaps proscar lowered my Dad's psa more than 50%.

If I use the worst case scenario of psa =.6 and tumor volume of 1.7 cm3, then the psa/tumor ratio is just above .7. 

Dan, I realize you are not a doc, but you have researched this disease thoroughly like I have and know more than many physicians about this disease.  In this regard,  your thoughts are much appreciated.  I just want to make sure we do everything we can to follow my dad before it is too late.

SIncerely,  Laughing again.

My Dad's stats:

RPP 2/08

Gleason 7  (3(10%) + 4(90%)

Organ confined T2c bilateral diseas (single focus)

No lymph nodes assessed

Extraprostatic Extension: Absent

Seminal Vesicle Invasion: Absent

Margins: Negative

PNI: present

Prostate volume: 33-34cm3

% involved by tumor: 2% or 5%

psas:  3/08<.01, 10/08<.01, 4/09<.01, 10/09=.01

Posted 3/22/2010 7:42 PM (GMT 0)
confused
I have not entered this website for a while and I've missed the great information that I have gotten in the past. Now, I again need some help.

I was diagnosed with PC about a year ago (PSA=2.3, PSAV=1.0 over 13 months, 7/15 cores positive, five cores with 40% to 80% cancer). Robotic surgery at NIH revealed a large tumor (30% of prostate) with a Gleason 3+4=7 and ECE (Gleason grade 4 on edge). This tumor clearly was trouble! A very unusual disease.

Combidex MRI scan (9/2009) showed small lesions (<2mm) in two pelvic lymph nodes and TRUS color doppler show neo-vascular growth in prostatic bed, bone scan 7/2009 was negative.

Dr. Myers started me on ADT3 (8/2009); casodex was changed to ketoconazole with hydrocortizone 11/2009.

42 sessions of IMRT to entire pelvic area at Dattoli Cancer Center (72 Gy) 11/2009 to 1/2010

Still on ADT3 (with Ketoconazole and hydrocortizon instead of casodex); should complete year on ADT3 by 9/2010

Dr. Myers wants me to start on Leukine ASAP, but health insurance won't pay. I need to decide whether to pay out of pocket or wait for health insurance appeal (or company subsidy). Any suggestions?

Monthly lab tests show PSA is still non-detect (<0.01 ng), but PAP has been slowly rising over the last 8 months (from 0.8 to 1.4); bone-specific alk. phos. has been stable, will start liver specific alk. phos. this week.

Dr. Myers concludes that my disease is very aggressive; dominated by stem cells generating rapidly proliferating PSA-negative population. Besides the ADT3 and resveratrol, curcumin, Vit D-3. etc., is there any therapeutic approach that might be effective.

I had considered entering a clinical trial with Designer Killer T cells targeting PSMA, but Dr. Myer says my tumor does not express PSMA so this trial is worthless. I trust Snuffy, but I still do not understand how he has arrived at this conclusion about my disease.

I also would like to get an opinion from another medical oncologist about my most unusual disease.
Any suggestions who I might contact.
Dan R.
Posted 3/22/2010 8:28 PM (GMT 0)
Dan,
Good to hear from you. Dr Strum in Ashland Ore or Dr Scholz in Marina Del Rey Ca are both knowledgable oncologists. Perhaps you can do a phone consult as you are on the east coast. I would stay away from the major cancer centers as they pretty much go by the book and established protocols. In your case some thinking out of the box is necessary. I doubt if there are more than a small handful of doctors in the US that could effectively treat your case and you already have one of them.
Good luck
JohnT
Posted 2/8/2011 2:13 AM (GMT 0)
Dan,

How are you doing? I just got back from Dattoli. I too had a rise of about 1.0 over 15 months. Diagnosed 7/10, PSA 2.8 radical with Dr. Catalona in Chicago August. PSA 2.8, 4+3with tertiary 5. 10% of 44 gram prostate, extensive PI., ECE on left side contained, LVI. T3N0 PSA post op 5 weeks 0.010. PAP pre-op 1.4. Went to US Too conference in Chicago late August. Briefly described my case to Snuffy at meeting. He said go to see Dr.D. No need to see him. Went down in October for pre-consult with Dr. Dattoli. He said no reason to do Combidex as based on my small nodes and PSA it would be inconclusive. PAP in October was 1.0, PSA <0.1. , 3 small suspicious areas in bed on color 4d. Good vascularization remained. Dr. D was very impressed with Dr. Catalona's work.


Just finished 75.6 Gy radiation. PSA post radiation <.010, PAP 1.2 though morning reading and previous 2 had been afternoon. Started triple blockade 90 days ago (Advodart, Trelstar, Casodex). Was thinking of going to see Dr. Myers. Dr. Dattoli told me to stay on triple for one year and then Advodart indefinitely.Schuled to return to Dattoli for follow up in July.

Take care!

Beattle
Posted 12/5/2011 11:46 PM (GMT 0)
Dan,

If you wouldn't mind, please email me if you get a chance. I have a few questions about PSA negative disease.

Thanks,
Jerry L.
Posted 7/30/2012 7:53 AM (GMT 0)
Hi Guys,

Just had my prostate out last week and it was 87 grams problem is my psa was only 4.1. Path says tumor involved 25% of prostate with a Gleason of 3 + 4. From what I have read my prostate tissue alone should have made more Psa than 4.1 which has me worried to say the least. My path was clear as my MRI and Pet Bone Scan were clean.I live in Southern Ca and it sounds like I need to contact DrSholtz.

Wishing you all well

Moose
Posted 7/30/2012 12:13 PM (GMT 0)
I am a patient of Dr Myers and have done IMRT with 12 months of ADT3. Seems to be working for me (so far). I am 12 + months post end of ADT3 with undetectable PSA. I did not have lymph nodes included in RT. I didn't have much difficulty with the combined treatment, however, the ADT3 wears on you over time. I was very happy when it ended. My T just got back to normal range after 12 months.
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