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Tuesday, August 19, 2014

In the Empire of the Sick, Cancer is King

Every so often I stumble upon a book that in retrospect could have been damn useful had I read it much earlier.  The Emperor of All Maladies by Siddhartha Mukherjee was published in 2010 and won a Pulitzer prize for non-fiction in 2011.   I was diagnosed with breast cancer in early 2012.

Cancer was hardly one of my preoccupations in 2010.  I was 45 years old and as far as I knew I was in good health. It was a great (and unpleasant) surprise to me in 2012 when the radiologist saw not one, but two tumors in my right breast, several other areas in the left one that were "suspicious" (one of which turned out to be another tumor), and clear evidence of infiltration into the lymph nodes.  And from that day forward cancer ceased to be an abstraction that happens to other people and became deeply personal.

While my empathy grew as a result of my experience, I must admit that my perspective did not.  If there was a bigger picture to ponder, a better understanding of the whys and wherefores of my diagnosis, active treatment and recovery left little time for it. (Shall I refuse my chemo because I do not understand how it works?)

Mukherjee's book is the big picture - a biography of cancer from the first allusions handed down to us from antiquity, to the most recent theories and treatments. If that sounds dry and uninteresting, I assure you that it is anything but.  Mukherjee is a gifted storyteller and what an abundance of stories he has to tell.

Mastectomy, chemotherapy, radiation therapy, HER, ER, triple positive, BRCA1/2, tamoxifen (to cite just a few of the dizzying array of names and acronyms today's breast cancer patient has to digest) all have long histories.  How and when they came to be part of the oncologists toolkit, and the political and social context around their development and use, are fascinating reading.

Some of the stories, however, are downright troubling.  The history of chemotherapy was one that made me wince.  To know that it began with testing on children without their or their parent's consent with some horrendous outcomes in the early days puts one's own experience (and suffering) with it in an entirely different light.  It is not comfortable to know that one is the direct beneficiary of so much suffering under such ethically questionable conditions.

Equally uncomfortable is Mukherjee's acknowledgement that theories and treatment options were quite often not based on rational step-by-step methodologies, but on instinct and intuition - what he refers to as "inspired guesswork."  One can be grateful for (and alive because of) the existence of brilliant well-timed insights, while being uneasy with the chanciness of it all.  For those living with stage IV cancer (or those of us who understand quite clearly that today's stage II can became tomorrow's stage IV in a heartbeat) there are no certainties that new and effective treatment options for what one has are "just around the corner."  This is the cosmic crapshoot of life in spades.

And yet, Mukherjee is optimistic.  There is progress, measurable progress, he says, and I believe him.  It's not just new treatments and new theories (his focus) but the attention now paid to the patient and his/her quality of life (mine).  I note that Axes 4 and 5 of the French national Plan Cancer (2009-2013) are about patient care and life during and after cancer.  When I compare my experience with that of my mother-in-law's nearly 20 years ago, mine was and continues to be so much better.

One (minor) criticism of the book:  how very U.S.-centric it is.  Is that because the bulk of cancer research was and continues to be done in the United States?  Or does it represent a bias on the part of the author?   A result perhaps of his being an English-speaker based in the US which meant that he favored local sources and thus didn't (or couldn't) look too closely at cancer research in other countries?


Anonymous said...

Cancer sucks on all levels - the process is physically painful and the results can create disabilities that don't go away. This is not to say that your medical team is fully engaged in doing their best to save your life. I believe that speaking up about pain and effects is key to helping make treatment more palatable. Speaking up is not self-pity but helpful to progress toward a better treatment protocol.

Catherine said...

I've heard a movie is being made from this book. Should be interesting, I think. More than once this title has been recommended - but I cannot bring myself to read an entire book about cancer. A movie, perhaps that could be done. Sounds like a good narrative, either way.

Anonymous said...

I also found it an impressive overview of cancer and cancer treatments (some of them horrifying, if I recall correctly that 'esteemed' surgeon who basically butchered women with more and more radical mastectomies).

But it did provide perspective and context to my cancer journey, although I only had the courage to read it a few years in.

Victoria FERAUGE said...

@Anonymous, Agree with you 100%. Saving a life and quality of life have to be balanced. The issue of pain control, the author said, was very controversial at one point. I found that horrendous.

@Catherine, I understand. I think I would have found it interesting and informative before I was diagnosed but not during active treatment or that first year of recovery. At that point I think it would have made me unbearably depressed.

@Andrew, You read correctly. The surgeons at one time though that they could cure cancer by removing more and more tissue which in the case of BC meant crippling the patients.

The irony here (in my case) is that my surgeon actually argued for my keeping the right breast (the left one was a lost cause). He thought a lumpectomy was quite sufficient and told me that there was only a 30% chance it would come back if I kept the breast. I said "no" and he respected that and removed both. After surgery he came by and asked me if I was still Ok with my decision and I said "yes, absolutely" and he was visibly relieved.