Childhood Cancer Deserves a Better Spokesperson

Charles Hemenway, MD, PhD (who speaks, by the way, not like the majority of pediatric oncologists that I have met) wrote a review of the movie "The Fault in Our Stars, based on the book by John Green about two characters with childhood cancer.  While he acknowledges that a work of fiction does not have to be accurate, what he goes on to say denegrates the cancer experience of all children who have undergone treatment, regardless of their outcome.

The most outrageous thing he says is that dying from a childhood cancer is not common.   Yes, getting cancer is rare for children, but once you have it, dying is not all that rare.  As a physician, a 30% mortality is nothing to minimize, and as a parent that number is absolutely heartbreaking.   These are children, after all, who have not yet had a chance to experience the things that bring joy into many of our lives, including the experience of falling in love.  The question he should have answered is "Does this happen?" and the answer is that it most certainly does--children with cancer are frequently hospitalized and attend cancer related events together, and they have many opportunites to meet each other, to fall in love with each other, and to know children who have died.  That is a reality he has apparently failed to appreciate in his years of caring for his patients. 

Next on my list of complaints is the use of the word 'cure', because for the vast majority of survivors of child hood cancer, they have significant health and psychiatric effects from their cancer experience.  In the June 2013 issue of JAMA the first article to prospectively evaluate the long term effects of cancer treatment noted: At age 45 years, the estimated cumulative prevalence of any chronic health condition was 95.5% and 80.5% for a serious/disabling or life-threatening chronic condition for adult survivors of childhood cancer.  That means almost everyone has problems from their treatment.

Finally there is his denial of the emotional trauma of cancer and the effects it has on families.  That is not as inexcusable as dismissing the children who die, but it is a close second, and it neglects the literature on the subject.  I am not saying that cancer is necessarily a different experience than other life threatening illnesses.  It is, however, life threatening, and that trauma ripples out across a family, and remains there over decades.  Cancer is no walk in the park, no matter what age you are.

I know this rant is long, but I want to close with how much I loved John Green's book, and his depiction of the emotional roller coaster that happens with serious illness and at the end of life. Don't pay attention to the nay sayers, the  joy that can be found for dying teens in his book is a ray of hope to be hung onto.  He brought childhood cancer to the attention of many and contributed to dimishing ignorance.  Which is more than can be said for Dr. Hemenway's reveiw.