Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place”             

                                                                                                                -Susan Sontag

 

Yesterday I travelled to Dublin to see a guest speaker at the Royal College of Surgeons Ireland. Of course all guest speakers are prestigious, but I wanted in particular to see this gentleman speak Dr. Siddhartha Mukherjee is an oncologist, geneticist and the Pulitzer prize-winning author of The Emperor of All Maladies: A Biography of Cancer. https://en.wikipedia.org/wiki/The_Emperor_of_All_Maladies

I’m going to disclose at this point that I haven’t actually read the book. It’s on my to read list, but I have been aware of its existence and the fact that Dr. Mukherjee was the opening  keynote speaker at ASCO 17. So I was curious enough to register for his talk, and I’m glad I did. The fact, the lecture theatre was jammed, even though outside, it was a fabulous summer evening, shows the interest there was in what he has to say.

What I liked in particular about Dr. Mukherjee’s talk was the obvious empathy he has for his patients, and his passion for research.  The presentation started with a discussion about a quote by Susan Sontang, which I have posted at the top of this blog.  It explores the idea that you move from health to illness, and back again if your lucky to survive, always two passports, but only using one at a time. As we move though into an era of genomic diagnostics, are we prepared for the effects of becoming someone who holds on to their illness passport for all of their life.

A “Previvor” is a phrase coined for someone who has found they have a genetic predisposition for an illness they may never become ill from.

Do we want almost everyone living in “Cancerland” even if they are healthy.  The following review which was published after the publication of Dr. Mukherjee’s book gives some food for thought, which the Doctor admits he did not fully understand the first time he saw it, it was written by Stephen Shapin of the New Yorker :

A world in which cancer is normalized as a manageable chronic condition would be a wonderful thing, but a risk-factor world in which we all think of ourselves as precancerous would not. 

It might decrease the incidence of some forms of malignancy while hugely increasing the numbers of healthy people under medical treatment. It would be a strange victory in which the price to be paid for checking the spread of cancer through the body is its uncontrolled spread through the culture.

There are many ethical questions that need looking at, but as a stage 4 melanoma patient, and I know, its easy to say these things with hindsight, I’d rather be a “Previvor” than living with the uncertainty of a certain terminal diagnosis. Of course I might think differently if I was someone with a genetic condition such as Lynch syndrome, or if I carried the Braca gene. Waiting for disaster to strike, knowing its inevitable, is a special type of torture in itself, whichever side of the fence you’re sitting on. There is a concern however that we will begin to treat people as patients in the future, who may never have become a patient.

Dr. Mukherjee brought us through a journey of cancer from its first mention on a papyrus scroll in ancient Egypt, to the wonders of modern medicine, like Barbara Bradfield the first ever patient to receive Herceptin for stage 4 breast cancer, who is still alive after twenty years, proof that precision medicine could save lives, by targeting common mutations in the cancer gene.

 

The discussion was interrupted with a video clip, that, introduced the very human face of cancer, not just the tumour.  Dr. Lori Wilson is a prominent cancer surgeon, who was diagnosed with breast cancer. The clip shows the moment not long after she begins Chemo, when her family gather to support her as she has her head shaved, effectively becoming that other passport holder. Losing her hair is a visible reminder that she has now crossed over, to being a patient. Dr. Mukherjee said when the clip ended that he makes all his oncology students watch that clip. It’s a stark reminder that there is no them and us in the world of medicine , anyone can find themselves in Lori’s shoes,  cancer is not choosy,  To See the clip click here

Some people mistake pessimism with realism, me, I like to think I’m optimistically realistic, I certainly felt that way after hearing Dr. Mukherjee speak yesterday evening, It’s certainly true it’s a much better time, to be stage 4 melanoma patient now than 14 years ago when I was first diagnosed. Then I would have lived possibly nine months if I was a later stage patient. Now with a greater understanding of cancer mutations, and targeted precision medicine I have already survived three years, I hope to get many more I’m optimistically realistic about it though, because I know how quickly this disease can turn on a patient again, I have seen it happen to many friends I have made over the last three years.

Research will continue, and more lives will be saved in the future, from this group of diseases commonly known as cancer. But, it’s never been and never will be, an easy task to try, to separate something that grows, from within our own body, consuming and destroying us, from the cells that live alongside that would save us. They are both the same being……. When the mystery of DNA was unravelled, it was just the beginning of unravelling the cancer genome, huge progress has been made, but we are very much scratching the surface of a disease, that is actually part of us. It is after all our bodies ultimate betrayal of self. Welcome to Cancerland……..

 

me and doc sid
Dr. Siddhartha Mukherjee and Me