Are those scientific breakthroughs you read online hype or hope?
Your child has cancer. Your doctors have given you the information you need, but you crave more. You go to “Dr. Google.”
Many of us can admit to doing this; mining the internet for any sort of literature about your diagnosis, treatment options, prognosis, trials… the list goes on. And if you’re anything like me, I visited the same websites over and over again, hoping I would discover something new I didn't see before.
The more my son started to slip away from this world, the more I searched online for that miracle cure. I was grasping at air. Call it hanging on to hope, or a knee-jerk reaction to my fear of losing him, my “researching” on the internet gave me a sense I was doing something at a time when I really had no control.
I remember reading a story about a breakthrough in the blood-brain barrier and then a new thermal therapy, and I immediately thought it could save my son.
But, science is slow. Brain cancer is fast.
“Science is not short and sweet or easy; it’s a slog. It’s why people spend decades doing it,” says pediatric neuro-oncologist Dr. Adam Fleming.
I recently sat down with Dr. Fleming at McMaster Children’s Hospital to get his perspective on some promising research news. A study from Stanford University Medical School discovered that in mice, a fatal brainstem tumour was cleared by injecting it with engineered T cells that recognized the cancer and targeted it for destruction.
“It may lead to a cure one day. We certainly hope so, but the reality is that for every 1,000 articles like this, only one idea will ever show benefit as a human treatment. It's very exciting to scientists and researchers, but it just sends the message that we're months away from using it to cure human beings.”
In other words, that miracle cure I was looking for was not going to be found in a catchy article I found tapping on my keyboard today.
Case study
To put it another way, many of the treatments used today to cure kids cancer were:
1) exciting news articles in 1995,
2) clinical trials from 2000-2010,
3) published results in 2010,
4) FDA approved in 2012,
5) and accepted in standard practice by 2015
Not surprisingly, Dr. Fleming says families will bring articles they found on the internet to their child’s appointment asking why no one is looking at this or why can’t they do this now. (I did too!)
“The future will always be more exciting than what’s happening right now and every treatment will work a little better,” he says.
It’s only human nature to want it now and even more so when you are the parent in a life or death situation with your child. At the very least, these breakthroughs you hear or read about in the news media let you know you or your child is not forgotten. Researchers are still working on it and making progress against childhood cancers.
And even if you can’t find an article about your situation, it doesn’t mean there isn’t someone in a lab somewhere with a possible cure in their test tube.
“There are a lot of smart people putting out good ideas, they just may not have the funds or promotion to get those ideas out there,” says Fleming.
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