When is there TOO much information?

So after seeing some discussion on this forum concerning a PORTOS score and how it may affect decision making about SRT, I inquired from my surgeon about getting this information for me. I found out that he (and many other surgeons at major teaching hospitals) have a relationship with GenomeDx and that allows me to get this information, thru my surgeon, for no cost. I believe my surgeon pays for some type of subscription and over time gets to build a database of his patients, while GenomeDx gets to build their overall database. Anyway, I got my Decipher Score a while ago (see signature) and now I just got my PORTOS score, well kind of……..

The eight page report lists all kinds of information. There are basically 6 sections to the report. GRID Molecular Subtype Signatures; Radiation Response Signature (Predictive); GRID Prognostic Signatures; Tumor Grading/Staging Genomic Models; Molecular Pathways; and Select RNA Markers-Top Outliers. I was just looking for a simple score but got so much more. If there is a point where there is ‘TOO’ much information for one person, this could be it, at least for me.

I guess I got what I asked for. It has opened up some additional worry on my part when I was kind of settling into where I am currently. That is, undetectable after RP, even with some adverse post-op pathology (see signature). Why the worry? Well, take my Section 2, Radiation Response Signature (Predictive). There are 4 sub-sections to the report and each sub section gives a percentile rank (my score and rank) to ADT Response (21, Average), RT Response (45, Lower), Docetaxel Sensitivity (56, Average) and Dasatinib Sensitivity (38, Average). Right off the bat, I see that I am at the lower end of the spectrum for response to RT. So, that is quite discouraging, being that I will most likely need additional treatment somewhere down the line.

I wish that was it, but Section 3, GRID Prognostic Signatures ranks me as a High Metastasis Risk, Section 4, Tumor Grading/Staging Genomic Models lists me as Higher Grade and Section 5, Molecular Pathways mentions a High Tumor Cell Proliferation.

What does all this mean? I don’t know and I’m not sure any one knows for sure. The findings in this report are based on data that may be incomplete, that is, the GenomeDx database is being built as we speak and the sample size may not be what it should be. More and more data will be entered and more and more patients will be tracked over time. One day in the not so distant future, the data will be able to be accurately mapped back to each new patient giving them a better view of their situation. I just don’t know if we are there quite yet. I am by no means saying that the data is worthless. I know it isn’t, just that there is more to do. My surgeons take on the report? Maybe slightly more aggressive, but maintain current course of uPSA every 3 months. So, I am going to use that to try to re-settle my mind.

If any member would like to view a copy of this report to see the kinds of things being tracked, contact me directly via email and I would be happy to send you a redacted PDF version of it.

There is never too much information. When you feel overwhelmed by what you have, call TallAllen. He has displayed a tremendous ability to cut through to the relevant information upon which to base decisions.

Bolo...when I first got here and couldn't decide what to do, one of the things that stayed with me was your advice not to be like the donkey that is stuck between two carrots and starves to death since it can't make a decision on which to eat.

JAYMOT -

How does the Porto differ from Decipher? And was the Decipher result more "optimistic" for lack of a better term? If so. I'd go with Decipher as it likely has a much larger database.

I spoke with the Decipher rep who works with my Uro/surgeon, he told me Decipher has shown so far, to have a 98.5% reliability rating.

I'm waiting for my results.

I can't even understand the Decipher report. From my understanding....Decipher uses 1 as their highest "rating". So....in your sig, JayMot, that .56 actually means 56% (of 100).

But...that cannot be right. My Decipher is .6 And it states that number as being "low risk".

Doesn't sound so low risk to me.

Island Time,

Yeah, that makes no sense. My take is that they must treat every one differently based on their specific gene pool they are looking at. Since my pathology is more aggressive than yours, they most likely found some genes in my workup that affected my risk level and did not find those same ones in you.

They must adjust their scale accordingly. Hey, take the low risk and run with it.

J

Thnks for the explanation JayMot. I knew tht they were both from the same company. That's why I asked. Sounds like they are both looking t the same thing, but interpreting them differently (different algorithms). So I don't see the point.

And yes, sounds like PROTOS jives with you final pathology. But the idea of these tests is that there re genetic factors in the tumor that may predispose a Man to a risk level that supersedes what is indicated in final path report.

One issue that hasn't been touched upon is that OP (Jay Mot) helped with the building of a database that, in due time, could be useful. At least, it would be my hope that GenomeDX will do something useful with the data, other than rewarding its shareholders.

Note that the cancer research community is collecting (whole genome) sequencing data on patients in the hope that this will be useful in the future.

PS: Presumably, 'informed consent' was requested by GenomeDX for the collection of the data and given.