Thursday, February 7, 2008

Spitting in tubes and resulting conundrums...

For the past month, I've been waking up, rinsing my mouth and spitting 3 ml. of saliva into test tubes for estrogen levels testing. Today, I collected the last sample, and am waiting for DHL to come and pick up my frozen spit for transport to the lab.

My first results from the genomic tests taken in January were emailed to me yesterday. It's going to take me awhile to digest this 56-page report (with even more accompanying detailed attachments), and the biochemist who has coordinated all of this testing will be calling me tomorrow morning to help explain what it all means.

I have not mentioned this before, because it all sounds so strange to me. It's either incredibly exciting or terribly embarrassing to be part of this project called GENESIS, suggested by my insurance provider back in December. Genomic testing could be either the cutting-edge future or the stupid nonsense of alternative-medicine pseudoscience. I have been highly skeptical through the whole process, monumentally nonplussed, waiting to see what the results are before committing myself to a plan of action that either embraces this newest "technology," or propels me screaming back into the arms of traditional medicine.

There are problems with both approaches. I have discovered that the practice of medicine, and specifically the business of cancer, is based on large-scale, statistical studies of groups of patients. Survival rates, treatment protocols and oncologists' recommendations are all predicated on the supposition that an individual cancer victim can play the percentages like a gambler in Vegas and have a probability of beating the reaper, at least for the first five years.

But then there's this genetic marker thing out there too, slowly gaining acceptance in the traditional medical environment, as seen in the new Oncotype DX test that my oncologist ordered that statistically predicted that I was at low-risk for recurrence.

GENESIS takes it even a couple of steps further, by mapping specific genes and identifying SNPs (pronounced "snips," which stands for "single nucleotide polymorphisms)." Those SNPs are variations in the genetic code that occur only at certain places on your chromosomes, and everyone has them--it's what makes us different from each other. Some SNPs have no effect on our health, but others can predispose us to disease or influence our response to a specific food or drug. Or so goes the argument.

It certainly sounds reasonable, but on the other hand, it also sounds like B.S. to someone accustomed to traditional scientific methodology. The objective truth is most likely somewhere in the grey area between so-called personalized treatment and statistical group probabilities. No one really knows where genetic research will lead. Will this infancy of genomic predictive factors become the standard norm in coming years as more is discovered and confirmed, or be discarded on the heap of plausible ideas that just didn't prove out?

By agreeing to be part of this project and having the initial testing done, I have willingly put myself in the position of having to eventually choose between an unproven new idea and a flawed-but-accepted treatment regimen. Either path could either extend my life or kill me anyway. I recognized that this was the danger when I first decided to be part of it.

I kept thinking throughout the process that I wouldn't be forced to choose, that I could walk between the new and the old and find a happy medium that would maximize the best aspects of both approaches. But now, looking at my test results at first glance, I realize that it was inevitable that I would eventually have to make a decision that comes down to literally betting my own life.

I'll continue to gather more information as the process unfolds. But I am no longer confident that I can play the odds at the same time I am exploring supposedly new frontiers. I'm going to have to decide what I believe and what I will do to take responsibility for my own future health. And back up that belief and responsibility with my own life on the line.

But what other choice would I have made? The person I am demanded that I at least question the status quo, and challenge the accepted, normal path. The optimist in me, the rebel in me, the faith-in-the-future me made it impossible to turn away from a possible opportunity that the new way might be a better way.

It's almost worthy of a classic tale of character flaws and hubris (or more realistically, a sappy mini-series about good intentions gone bad). I have a small amount of time in which to decide, and in the end, only the passage of more time will determine if I chose well or poorly.

2 comments:

THIS, THAT AND EVERYTHING said...

Crazy, but some of the stuff we write about and experience is like right out of a sci-fi novel. As I sit here at lunch eating cracker jacks and my eyes enlarging at such wild info........well, gee whiz - when will it come to an end???? I'm ready for the next movie - will we ever be able to move on?

terry said...

Pam, First of all, Project "Genesis" sounds like some scary experiment involving humans in test tUbes from "Brave New World." Couldn't they come up with a less terrifying name?
Secondly, I don't know about you but sometimes I feel way too young (at age 54!)to be making decisions about what road to take re. my healing or lack of same. Isn't there some grownup around who can tell me what to do?