June 21, 2013

The Story of Late Effects

MHYH is dedicated to telling the story of late effects of cancer therapy as told through the lives of individual survivors who are willing to place their lived experience into the hands of others for the benefit of survivors everywhere.

The Wall Street Journal along with several news outlets reported on a study of 1700 survivors of childhood cancer in a study out of St. Jude Children’s Hospital with Melissa Hudson, MD referenced as one of the principal investigators. The second sentence of the WSJ piece reads as follows:

“Researcher found in a large study if adult survivors of childhood cancer, that more that 95% suffered from a chronic health condition by the age of 45, including pulmonary, hearing, cardiac, and other problems related either to their cancer or the cancer treatment.”

“The authors reported that among survivor who had undergone treatments associated risks, who had undergone treatments associated with pulmonary [respiratory risks], 65% were then found to have pulmonary problems.”

“Of those exposed to cardiotoxic therapies, 56.4% turned out to have cardiac [heart] abnormalities.”

Phrases such as “extraordinarily high” [and] “greater than anticipated gave me the impression that the researchers, themselves, were shocked to some degree by the prevalence of late effects among survivors.

As a 35 year survivor of Ewing’s Sarcoma whose heart failed more than 5 years ago at the hands of chest radiation and an anthracycline-based regimen,  I must confess to you that I was not surprised.

I am, however, astounded, and yes, outraged, that these individual survivors had NOT been diagnosed by those charged with their primary care. These survivors were diagnosed BECAUSE they were REGISTERED PARTICIPANTS which necessarily means that there are others who are affected, yet don’t even know they are at risk. Not every survivor has the opportunity to be a REGISTERED PARTICIPANT.

The reality is there is a lacking among survivors regarding the specifics of their past diagnosis and treatment walking hand in hand with an unacceptable lacking within medical education as we know it today. Couple those realities with the paucity of clinical research in the area late effects, and I think we are hard-pressed to even begin to approach the prevention of these late effects.

Finally, my heart broke as I read through the comments section only to find a survivor’s value being measured by their return of investment [ROI] which seemed to be defined as the number of future tax dollars lost to chronic illness.

Are you KIDDING me?! Have we reached the point in our culture where we measure the value of an individual life in lost tax revenue? Are we REALLY going to STOP treating cancer, childhood or otherwise, because the ROI doesn’t justify the up front cost to cure?!

I will speak for myself: May the value placed on my health [and] wellbeing never be measured by the number of tax dollar generated. No, let the value of my life be measured by moments spent with family [and] friends, children with cancer [and] their families, and the impact of my lived experience on those in my past, present, and future. At the end of every day, those MOMENTS are PRICELESS!

We invite you to become a part of this story-unfolding in whatever capacity fits with your life in the here [and] now.

There’s no dollar sign on a piece of mind, so I invite you to share your piece by leaving a comment section.

P.S. I am now a 37 year survivor of Ewing’s Sarcoma.

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