I wish I’d had precision medicine

A guest post from e-Patient Dave deBronkart

By Lisa Brockway, Jan 26th, 2017

Imagine if you – or a loved one – were dying and the doctors could only say, “We don’t know exactly what’s wrong. We know what disease you have, but we don’t know how it works and there’s no sure cure.”

That was my situation ten years ago this month. I cried.

I’d just been diagnosed with Stage IV kidney cancer. There was simply no confident science about how the disease worked at a molecular level, much less how to fix.  I got a treatment that usually doesn’t work, sometimes does, and sometimes kills patients … and nobody knows why I survived, nor how to predict any particular case.

My treatment ended in just six months, and I’m all better. But what a crap shoot. This was hardly precise – it was blind luck.

Cancer is the king of mystery.

Humans want certainty – I certainly did! – but throughout history medicine hasn’t had it. It took eons for us to figure out bacteria, and until then we were powerless to stop infections. Similarly, until the late 20th century we didn’t even understand that cancer is damaged DNA, so any treatment we tried was a shot in the dark.

Sadly, much of the treatment – even in the 20th century – was a best guess based on no science. Even the harshest treatments, such as radical mastectomy, were nothing but ignorant butchering: there had never been a shred of evidence that radical mastectomy had any benefit.

My oncologists were honest about the odds, not afraid to say “We don’t really know.” The microscope told them what kind of kidney cancer I had, not unlike knowing what kind of infection you have, but they still didn’t know how it got there, nor what to do about it.

The Pulitzer winning 2011 book The Emperor of All Maladies: A Biography of Cancer details the slow unfolding of the cancer puzzle, and it gave me empathy for the challenges a clinical oncologist often faces, forced to take a blind shot, not knowing who will respond to a treatment and who won’t. (Years later my oncologist said he likes my follow-up visits, because most of his patients don’t make it. Can you imagine working like that?)

Emperor says that as our knowledge grew, we saw that cancer isn’t like getting an infection, which lands in you and grows – it’s more like being dragged to a cliff over a period of time, as one gene after another goes wrong. Then, all at once, catastrophe. For ages we didn’t even understand what most DNA does – it was called the genetic “dark matter,” with no known function.

I wish I’d had precision medicine. Spread the word.

Now we know that much of the mischief is in those genes, which gives us the power do something about it. As we learned more, at last we could start to deal with it methodically – and, today, sometimes it’s even precise. The precision is in its early stages: a vast world of possibilities is in front of us, though we don’t yet know most of what it means.

The new era is upon us. But news doesn’t travel fast in medicine – thousands of new scientific papers are published every day, and it takes years for new knowledge to reach every doctor.

You can help. Precision medicine is the new horizon of cancer treatments. Just as with the discovery of bacteria, there is much still to be learned, and most cancers aren’t there yet. But work is progressing at an unprecedented pace. For medicine to best achieve its potential, it’s essential that we spread the word.

One way to start learning more and spreading the word is by visiting www.precision-medicine.me – it’s a brand new collaboration of more than a dozen organizations and individuals (including me) aimed at getting the best treatment and trials for cancer patients, starting with lung cancer. I hope you’ll check it out.

e-Patient Dave deBronkart is an international keynote speaker, author, and health policy advisor who serves Antidote as Special Advisor for Patient Perspectives

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