Friday, July 15, 2011

The Experts are Wrong (Sometimes)

“It's another fact of cancer that the more informed and empowered patient has a better chance of long-term survival.”     Lance Armstrong

I’m by no means an expert in cancer diagnosis, but I’ve learned a few things from the experts and the so-called experts in the past year that have helped me avoid costly, perhaps life threatening mistakes. I feel that it is important to share these, because the most important lessons – as they often are in life – are the ones they do not put in books or brochures outside the doctor’s office.  So sit back and join me on a journey through my diagnosis experience and see the lessons I have learned.  They can literally save your life.

Experts have a hard time seeing beyond the focus of their expertise.
Many of the lessons I’ve learned deal with the fact that I am not, in medical terms, an “expert” and those that are considered experts are not always the right experts.  This can sometimes be because of the question that you - the patient – are asking, either implicitly or explicitly.  When I was starting to have mysterious black eyes on my right side I went immediately to an optometrist and then to an ophthalmologist.  I was already assuming, implicitly by my selection of specialist, that something was wrong with my eye.  These experts correctly told me that there was nothing wrong with my eye.  They incorrectly told me that everything was probably OK, that my symptoms were some temporary isolated trauma that would go away soon. I took only their expert opinion about my eye and disregarded their other conclusion, as I knew it was an assumption beyond their expertise.  The black eyes continued so I was right to disregard their sweeping statements of my good health.

Generalists can have a hard time looking beyond the obvious.
Assuming that my actual eye was OK I then went to my generalist doctor to see if there was something else that would explain the black eyes.  He agreed with the specialist that it was some kind of local trauma and that the big picture – my excellent overall health – led him to believe that there was nothing wrong with me.  He went further to posit a theory that I was punching myself in my sleep or sleeping on a closed hand that caused the trauma.  Perhaps my wife was beating me after I passed out from drinking too much?  He even offered a personal story from his boyhood as evidence of this possibility.  I asked specifically if there was something inside my head that could cause the black eyes.  I asked if I needed some kind of brain scan.  He vehemently claimed that it was impossible for something in the head to cause bleeding on the face – the head was just not made this way.  His assumptions and conclusions were all wrong.

If you do not like the answers you are getting, then examine the questions you are asking.
Still looking for answers I figured I needed a different kind of expert, one on the area around the eye and not one that just looked at the condition of the eye itself.  I had no idea what kind of expert that would be and asked my kid’s optometrist.  He recommended an ophthalmological surgeon who would have the expertise of the whole eye structure - the orbit – that contains the eyeball as well as optic nerves, etc.  I stumbled across a brilliant doctor in Boca Raton by looking for the eye doctor office with the most number of doctors and ad space in the phone book.  Most of these do cosmetic surgery, but they would have the right frame of reference I was looking for.  Immediately in my first meeting with him he assumed there was something behind my eye and ordered an MRI that plainly showed the growing tumor there.  I think he was brilliant because even though he could not immediately come up with a reason that an orbit tumor could cause the black eye, he went with what his analysis was telling him.  He was surprisingly honest and open with me about this.  He did later came up with a theory that the tumor was rubbing the walls of the orbit , rupturing small blood vessels that leaked blood into my face under the right eye causing the black eyes.  Brilliant.

Even world-class experts have a hard time seeing beyond the focus of their expertise.
I was referred to the best orbit surgeon in the US to deal with the tumor.  He treated me for what he assumed was a cavernous hemangioma (basically a knotting of blood vessels) in my right orbit.  He planned surgery after waiting two months for the blood to clear up in the orbit.  He never once brought up the idea that it was something else, a cancer tumor perhaps, even though his staff had my previous melanoma history.  I believe the disconnect of giving my history to his staff and then only listening to his opinion in the few minutes allotted to me allowed this mistake to happen and is a potential downside of large teaching hospitals.  I should have asked this question but I did not.  I should have insisted on a biopsy and I should have sought a second opinion, but I did not.  When I developed a skull lesion he continued with his treatment protocol.  Even when, the Friday before my scheduled Tuesday eye surgery, a PET scan showed I had metastatic melanoma throughout my body, he still believed the evidence suggested it was a hemangioma and not a cancer metastasis.  Was he covering his ass or just being stubborn?  I learned from this the medical theory of unified diagnosis, which says you look for the diagnosis that explains as much of the problem as possible.  The possibility that the eye tumor was a hemangioma while all my other tumors were metastasis was not unified.  But he was an eye surgeon focused on removing the thing in my orbit and he was not looking for the reason why it was there.  I made some mistakes here but thankfully it only cost me a couple months of diagnosis.  Lesson learned.

Finding the right type of doctor does not mean you’ve found the right doctor.
My first oncologist was very unpleasant, but I know that an asshole doctor can also be a brilliant doctor so I stuck with him through my initial staging process.  I found him after searching for the doctor at the regional cancer center that was most published, most involved in research and best known.  He was indeed the expert on melanoma at that cancer center and I was fortunate to get an appointment with him, or so I thought.  In his brusque manner he examined my PET scan and said I had to choose from one of four treatment options, with just a few sentences of explanation of each.  He urged me to make a decision quickly, and even called a couple of times over the next week asking what my decision was.  The options were all standard treatments with 0-15% response rates – chemo, high dose IL2, BRAF and Yervoy.  He did not mention any of the other options out there, and although he was familiar with the t-cell therapy he said I was not a candidate because my tumors were not large enough to harvest.  This was absolutely wrong, and the treatments he offered were standard and did not take anything into consideration about my specific health and condition.  Indeed, he did not ask anything about my current health or general medical history.  And when I told him I wanted an opinion from MD Anderson he said his cancer center could offer anything MD Anderson could.  Wrong, wrong, wrong.  I walked out of his office and never went back.  Another doctor I know, when told about this, asked me what you call the person that graduated last in their class at medical school?  “Doctor.”

Experts can be right and wrong at the same time.
My third opinion came from a well-known oncologist in Florida who was one of the nicest doctors I’ve met in my journey so far.  He was very generous with his time and was very willing to argue the merits of different treatment protocols, but I believe he was wrong in his conclusions.  Who am I to question a well-known oncology expert?  Case in point, he said that biochemo treatment was proven academically as ineffective and that he had personal experience with the failure of the treatment to cure his patients.  He asked me not to go through with it at MD Anderson.  This really perplexed me and I dove into the scientific data for answers.  I read many medical journals, often putting a “Dr.” in front of my name to get a trial subscription to the expensive ones.  What did I find?  After biochemo was first introduced and began making headlines it was rolled out across the country.  A study of the resultant experience with biochemo found that the earlier stated results of 30%+ response rates were not being replicated and the toxic side effects were much more difficult to patients than earlier studies had stated.  So the doctor was right?  No.  I also found a later study of this study’s results which showed that the treatment in the medical centers where there was biohemo expertise (Angeles, MD Anderson, etc. ) remained successful.  The conclusion was that the expert staff at these centers – doctors and nurses with special training and experience with the protocol - could better help patients handle the side effects of the toxic treatment which allowed the patients to get higher doses that lead to higher results.  Your local cancer treatment center could not achieve the higher doses as patients developed problems with the toxicity and therefore had the lower results.  There is still controversy about this – I believe stemming from some kind of institutional inferiority complex of many regional cancer centers - but it made sense to me.  It explained how he could be right and wrong and the same time.  Additionally, I made an estimation of the demographics of this doctor’s practice which lead me to assume that most of his patients were elderly as it seemed to treat the large retirement population where it was located.  He probably rarely had the healthy patient like me looking for rigorous treatment.  His cancer treatment experience and expertise did not match my needs.  He was right, but not right for me.
     I’m not saying that I am not still making mistakes, but I always question assumptions – others and mine.  The experience of cancer diagnosis is a scary one, more so than the actual treatment protocols.  I've heard it described as being transported to another country.  One day you are making coffee before work, taking your kids to school and planning your weekend.  The next day after diagnosis you are alone in a foreign land where everybody speaks a different language.  There are many people willing to help you, offering to show you the way home.  But the path home is painted in the art of self reliance.  That is the current state of cancer care, like it or not.
     Cancer is not going to get an easy break from a misinformed doctor.  Not with me. Not now. Not ever.


  1. William this is brilliant - I hope you don't mind but I've forwarded this to several friends and family members because so often people just take the first advice they receive and don't question doctors, and the results can be disastrous.

    I hope you're feeling good and enjoying the tour! Can you believe Voeckler?!

  2. Hi William - this is great. I found your blog from a MRF tweet. So true about docs. We put our lives in their hands without thinking twice and this is a big mistake. You must be your own advocate and do the research - especially with melanoma. I love your tip about using Dr names to get the research. It really pisses me off that cancer patients have to pay for research on cancer! And I know of a number of people who are complete responders to biochemo in San Francisco and dont understand why it isnt more widely used. Maybe I missed something but was just wondering what stage of melanoma you had before you went to 4? All my best, Emily

  3. hi william - i wanted to say thank you for sharing your story. i was diagnosed with stage III melanoma last year and am set to finish my year of interferon treatments next month. your blog gives me a boost on the tough days to keep up the fight. it also gave me a nudge on my decision to start my own blog to get my thoughts out and so i started it last week. take good care - sending you good thoughts....

  4. Excellent incite to a world that most of us know nothing about but should. Keep up the good work.

  5. William-
    I continue to be inspired by you and your strength! You are so right in everything you say. Doctors are human beings doing a job and they are not always right. You know you better than anyone else, and you will continue to be your own best advocate.

    It is your strong good fortune that you are bright enough to understand this very confusing information well enough to keep moving forward searching for the right cure for yourself, and now obviously for others in similar situations who have found your blog. Cancer has no idea who it is dealing with here!

    Love to you and the whole family. We are praying for your continued strength as you battle!

    Love, Casey, Scott and Jake

  6. W., it's a privilege to be able to tune in and follow your journey as it unfolds. You really do write exceptionally well(!), and what you've said about "experts" resonates soundly with things I've experienced over the past several years helping my mother in her own health care battles. Trust no one (at first)! :-)
    Most importantly, I think one cannot overlook the curative value of having caring friends and family - as you so obviously do - surrounding you and cheering you on at each phase. When situations threaten to turn into a street brawl, you gotta have a posse at your back! Lisa and I send you our love and massive respect.