Standing on the Shoulders of Giants: me (plus clinical trials)

I laugh with my kids about how the internet revolutionized our lives.  When I was younger, we used to argue about facts on and off for years.   My kids argue briefly and let Google figure it out.  Doesn't really cut down on the arguing, but at least they put an issue to rest and move on to another fairly quickly these days.

I don't remember much from 8th grade science class.  To be honest, I don't even remember what branch of science it was focused on and, while I can see his face, I don't remember my teacher's name.  What I do remember is a single quote our teacher attributed to a modern scientist accepting some big science prize--possibly a Nobel, but I don't remember for sure.  While accepting the prize, the scientist said, "I am merely standing on the shoulders of giants."

I've tried to find out who it was, but Google gives me lots about ancient legends and Sir Isaac Newton and nothing (or nothing I have the patience to wade through right now) about modern scientific prize winners.  Perhaps I'm remembering wrong, perhaps it never really happened (that was another hazard of the time before internet, urban legends had much longer legs), but I still love that quote.  

So much the we have is built on the work of those who came before us.  Cancer fighting techniques and my odds of staying alive are no exception.

There's a blogger who writes about science and medicine who's written the clearest explanation I've seen about the process of developing the knowledge that is our current treatment for breast cancer here.  The knowledge gained is impressive, but as impressive, to me at least, is the number of women over decades of time who were willing to be part of these trials and help provide better treatment for those of us who would follow.  I am profoundly grateful to them.  

It isn't an understatement to say I likely owe them my life.  For my cancer, they estimate the chemo regime I had offers me a 32% increase in survival odds (32 out of 100 more women will be alive because they had the chemo regime). 

Good trials require a lot of things, but one of the biggest requirements is a large enough number of participants to see what's due to the treatment difference.

I think about it this way: I'm having pain in my hip.  It could be I injured it exercising.  It could be the tamoxifen.  It could be a genetic predisposition to hip weakness.  It could be wear and tear from my years as a cross country and distance track runner.  It could also be bad shoes.

So, at my doctor's suggestion, I've been resting it and taking Advil.  It's a bit better now.  I'm assuming it's the rest and Advil that are helping, but I have no way of knowing if it could really be better because I haven't been wearing athletic shoes or because the leaf mold has put me back on my allergy pills and they help or because I'm eating food with more or less of a certain vitamin or mineral over the last 2 weeks, or something else entirely that I'm not even thinking of.

I'm one person with all kinds of things I do every day, so who the heck knows which it was?

But, if someone who knows a lot more than I do about joints and allergy pills sees a way allergy pills might, say lubricate joints...  Or if someone looks at records for people who take these pills and notices there seems to be a trend of less hip pain...  That's a great time to set up a trial and see.

With enough people involved, the different little things we each do (wear sneakers, eat a lot of berries, stretch after exercise or don't) have a much smaller impact on the whole and by looking at lots of people with hip pain and giving them either the allergy pill or a sugar pill, we can get a much clearer picture of whether the allergy pill makes any difference or not.

As a cancer patient, I probably hear more than my share of stories about people who did x, y, or z and are now cancer free (in my life, these come from a place of love and a desire to help me, so I'm thankful for that).  As a cancer patient, I also have been through times where I have been very sad and very frightened and want to do something to make it better, so there have been times when I've been pretty "ripe for the picking" about ideas that might help me.

But the thing is, while you may have heard of someone who had cancer and drank 10 cups of organic juice every day and are cancer free to this day, that's not really proof that the juice helped.

Maybe it did, but maybe all the cancer was removed by surgery or the first doses of chemo the person did prior to giving it up and juicing.  Maybe it was something else the person did but isn't thinking to mention, like hit menopause, lost weight, or stopped using goodness knows what.  Maybe that person is one of the lucky few who were on the right side of the odds--even a cancer that will kill 95% within 5 years still has 5% who don't die, and someone has to be in that 5%, right?

Goodness knows cancer sucks and I, as much as anyone, want to believe in things that will help.  But so-and-so who did something and is better doesn't tell me anything, really.

Maybe it doesn't hurt to add whatever so and so did into the mix if it's harmless, but if its something with the potential to do harm, either by itself or because of what you give up to do it, well, I don't want my life to be hanging in the balance.

So that's where the clinical trials come in.   When enough men and women sign up and people track carefully, then we know.  And, for me, that's how we know my dose dense ACT chemo regime works better than AC alone which works better than the earlier chemo regimes which works better than no chemo.

Maybe I'd be one of the lucky few who would have lived anyway, but the stakes are high and the odds aren't good.

And so I truly believe I stand here today by the grace of God, medical people, and thousands of men and women who cared and paid it forward.

(and yes, I am in a trial myself--to my kids and their generation: hope it helps!)