Exceptional Responders and Healthy Survivorship

Perhaps the greatest challenge for Healthy Survivors is deciding when it is time to let go of hope that treatment will help. "If I believed the statistics," Ella Remmings emailed me, "I would have been gone a long time ago. My chance of surviving Stage IV gallbladder cancer for five years was a whopping 5%. My oncologist said it would be more like six months. I was only 45."

That was in 2008. A researcher and healthcare strategist, Remmings thought "there was little reason to cling to false hope or to believe in miracles, yet the researcher part of me wanted to know: Who is in the 5% group? How do they find out before giving up?"

Remmings reached out to me because of our shared elite status in the cancer club: We've outlived our prognoses by years. We want to see changes in researchers' approach to trials, with more attention paid to patients now called outliers, super-responders, exceptional responders and medical miracles.

In her email, she reviewed the way trials were done, concluding that," the potential breakthrough benefit of a treatment outside of the average was inadvertently missed…by design.... Today we are no longer discarding patients who fall on the edges of the treatment response curves and...are dedicating more resources to studying this group of patients." 

Looking for lessons in cancer's 'miracle' responders,and this week's People Who Avoided Illness Could Be Key offer nice overviews.

Next, Remmings shares her perspective on how Healthy Survivors know if they are exceptional responders.