I know science is for scientists.  And medicine is for medical professionals.

But to be of benefit in our health care system, science and medicine must reach the end consumer -- people.  Regular, average, ordinary, everyday people.   People with feelings who are sometimes struggling to cope with a very real threat to their ability to live a quality life, or to live at all.

For those people, the words of science and medicine matter.  They help describe circumstances and set expectations.

Choosing words carefully can make a difference for people.

Frontline caregivers know this.  That’s why bedside manner is important.  You wouldn’t want medical professionals making a diagnosis of multiple myeloma to kick off the discussion with “Based on current data, most of you are dead within five years.”  That would be bad.

So I want to know which scientist came up with the term “progression-free survival.”

I am sure the choice was made out of devotion to scientific precision or something like that, but talk about turning a positive into a negative!

I am extremely fortunate.  I am in remission.  Complete response.  No myeloma detected.  I got there with novel agents (another odd term that communicates nothing really about how they work and what they do, but we will save that discussion for another time.)

After balloon kyphoplasty, five rounds of chemotherapy and stem cell collection, none of which was fun, I feel great -- as good as I did pre-diagnosis.

Now I am told that maintenance therapy with Revlimid ^[1] (lenalidomide) can extend my “progression-free survival.”  Not my progression-free life, not my progression-free time, but my survival.

I don’t know about you, but survival is kind of a scary term.  Precise perhaps, but not exactly optimistic.  It’s kind of like being told that you are on the Titanic, but you haven’t hit an iceberg ... yet.

Another friend who has fought off cancer told me the main psychological goal for cancer patients is to try not to prepare to die, but to prepare to live.  Focusing on “survival” is not the way to prepare to live.  And while I don’t know how long my remission will last, I am focused on living today.

I suspect progression-free survival is a hold-over from an earlier period when multiple myeloma patients didn’t survive much.  And it’s used widely for other cancers.

Now, however, we are in a new period when recent advances in drug development hold the promise of turning myeloma into a chronic disease to be managed for the long haul.

One of my doctors, Dr. Ken Anderson at the Dana-Farber Cancer Institute in Boston, spoke recently of a day when his myeloma patients will be cured.  Given myeloma’s an incurable disease, he was pressed about what he meant.  He replied, “When my patients grow old and die of some other cause.”

Carefully chosen, encouraging words.  That’s what I’m talkin’ about.

When I was diagnosed, I asked every doctor I met to tell me the hallmarks of a successful cancer patient.  To a person, each answered: “A positive attitude.”

So can we find another term, please?  One that helps set a positive attitude.  Can we remember that words matter?

When we invent new terminology in the future, can we remember the end user, and think about the importance of a positive attitude to promoting progression-free life?

This is a guest patient opinion article by David Mitchell. David was diagnosed with multiple myeloma on November 8, 2010 at the age of 60. He is currently living a progression-free life with his family in Potomac, Maryland.