Lessons Learned on the Medical Road

Below are a few lessons that I’ve learned on this journey.  Hopefully they are useful.

Proper Cancer Staging and Correct Diagnosis are Critical at the Outset

This basic information determines the game plan for your treatment.  If it’s not accurate, you can solve the wrong problem or solve it incompletely.  I mentor other cancer patients and have heard about treatments that turned out to be misguided by an inaccurate initial staging of the cancer.  If you detect any crack in your doctor’s confidence ask them to explain how they arrived at your diagnosis, how certain they are, and whether additional testing could be helpful.  You are setting off on a journey and you better make sure you know where you are going.

Don’t be afraid to ask these questions:

1. How many cases like mine have you seen?
2. Is there another doctor who is more experienced than you are?
3. What would you do if you were me?

How hard you press on these questions is related to how serious and unusual your case is.  My initial diagnosis was unusual so my doctor's answers to the three questions above were:

1. Not many…maybe two or three.
2. Yes.
3. I would go to the Mayo Clinic.

Ever Watch a Fishing Guide Clean Fish?

The above advice is particularly important if you are facing a delicate or complicated surgery.  You want the surgeon who has performed your surgery many times.  I consider myself a competent cleaner of fish.  But when I watch Blair Therrion up at Forrest Lake Lodge in Ontario clean the entire camp’s catch in 20 minutes and produce flawless fillets, I am reminded that there is a big difference between competent and excellent.

The Gray Area…Your Doctor’s Dilemma

I believe that all doctors want the best outcome for their patients.  Oncologists are especially caring; you have to be to choose that specialty.  But I have a theory that there is a gray area....A scenario where doctors are aware of a treatment that could be helpful yet may be reluctant to bring it up.  

Here’s an example. When colon cancer spread to my liver I made it clear to my University of Chicago doctor that I would go anywhere and do anything (within reason…e.g. no coffee enemas or Amazon sweat lodges) to fight it.  He suggested a program at Sloan Kettering.  It meant another surgery to implant a titanium pump and would require trips to NYC every few weeks for specialized chemo.  I did it and it was very effective.  Sidebar: I know what you’re thinking: If it worked so well why are you writing about dying?  Good question.  Just before my liver was declared free of tumors, the cancer jumped to my lungs and that started a new battle.

I have since spoken with several people who have a diagnosis similar to mine.  None have been offered this option.  I don’t think it’s because they have uninformed doctors,  I believe it's because doctors are reluctant to offer treatment programs if they judge them to be outside of what the patient is willing to do.  Almost everyone I’ve told about my Sloan Kettering treatment has said: “Wow…you go to New York for a few days every three weeks…I would never do that.”

Think about your doctor’s position.  He has you on a solid course of treatment…it’s the standard program available right in your home town.  But he is aware of a specialized oncologist at MD Anderson who is doing leading edge stuff with your type of cancer.  Does he mention it to you?  I think it depends.  If you haven’t signaled that you want to hear about all options, he may not.  Why?  Because, for you, the idea - and/or expense - of traveling to Houston for treatment may be out of the question and the only thing he’s accomplished is instilling doubt in your current treatment plan along with a vague sense that your doctor - with whom you feel pretty close - is trying to dump you.

So if you want to hear about all options, be sure your doctor knows that.

Don’t Google too Much

Seriously, don’t.  That’s what you are paying the doctor for.  If your diagnosis, treatment plan and, especially, survival rates are just one search phrase away, then a lot of money is being wasted on Med Schools.  That said, it is helpful to do some research yourself to become more aware of options but then use as a starting point for questions with your doctor and not as definitive information for you.

Bedside Manner is Nice. Knowledge and Experience are Better

It’s great if you can have both but it’s better to have the nerdy, passionate, straight-shooter than the friendly guy from the country club who’s a scratch golfer.  As with other professions, there is a wide range of skill levels and they don’t always correspond to personality.

Remember what they call the person who finishes last in their Medical school class: Doctor.