What I wish I knew about Multiple Myeloma treatments 25 years later...

Download the FREE ebook "Beating Myeloma: If I Knew Then What I Know Now" and arm yourself with the information about autologous stem cell transplantation, treatment options, and side effects that I wish I had known about when I began treatment.

Language of Oncology- What Multiple Myeloma Patients Need to Know-

Share Button

“I don’t want to call it dehumanization, but the language of (multiple myeloma) oncology that was instilled in us early in our fellowships is a language that we tend to adopt as a second skin.”

The language of oncology matters. Language matters even more to the newly diagnosed multiple myeloma (MM) patient. To say the newly diagnosed MM patient is in a fragile emotional state is an understatement. Therefore it is up to conventional oncology, in my opinion, to work hard to communicate with MM patients.

Language matters for MM patients in two ways.

First, volumes of important information goes unsaid by oncologists. I almost fell over when I learned that oncs have a different definition of the word “cure” than I did. Oncology’s definition of “evidence-based” is scary-and different from mine.

The concepts of cure and evidence-based are perhaps the two most important concepts to MMers.

Secondly, oncology suffers from the curse of knowledge. They know so much and have been practicing oncology for so long that they have forgotten what its like to be…normal. An example of this is oncs’ habit of tossing around the names of chemotherapy regimens as if everyone knows and understands these ridiculously confusing names such as

  • Lenalidomide,
  • Thalidomide,
  • Cyclophosphomide,
  • Bortezomib, etc.

The newly diagnosed MM patient often has to work with several physicians at the same time. During the first month after my diagnosis of MM, I met with

  • a pathologist
  • a surgeon
  • an oncologist

all in the same week after I was told that, at 34, I had an incurable but very treatable blood cancer called multiple myeloma? Do you think I was confused?

So what’s the solution? First and foremost, oncology has to change. Not only should MM patients work with MM specialists to greatly improve their average five year survival averages, MMers need to work with oncologists who know how to communicate.

Secondly, newly diagnosed MMers must work with a MM survivor who can break down MM treatment into manageble parts. I understand this sounds self-servicing but working with MMers is what I do.

Have you been diagnosed with multiple myeloma? Do you confident or confused when you leave your oncologist’s office after an appointment?

Scroll down the page, post a question or comment and I will reply to you ASAP.

David Emerson

  • MM Survivor
  • MM Cancer Coach
  • Director PeopleBeatingCancer

Recommended Reading:


How Much Does Language Matter in Medicine?

“Did the patient fail the treatment, or did the treatment fail the patient? Word choice can influence perceptions as well as outcomes. When physicians use jargon, it can leave patients feeling confused and disempowered.

In addition, some people find labels such as “diabetic” and “schizophrenic” dehumanizing, giving the disease center stage ahead of the person.

“A lot of the language that’s baked into medicine reflects a time when medicine was more paternalistic, when patients were not equals or partners,” says oncologist Tatiana Prowell. Is it time to rethink some of the old phrases, or is this just political correctness run amok?”

The Power of a Physician’s Kind Word

“Physicians sometimes wonder how much patients pay attention to what they say and what kind of impact they have made.

The answer appears to be that a kind word and expression of concern from a physician can have a far more powerful effect on patients than was previously thought. A growing body of evidence suggests that offering kindness, empathy, or words of encouragement leads to better patient engagement, a more trusting relationship, better health outcomes, and a less stressful practice for clinicians…

An Emotional Slap in the Face’: The Language of Cancer

“To pick up on that—I don’t want to call it dehumanization, but the language of oncology that was instilled in us early in our fellowships is a language that we tend to adopt as a second skin. So we talk to each other about “that cancer patient”; for example, “How is that ovarian cancer patient doing?” We are full of empathy but we’re really looking at people based on their disease…

First, frankly, our opinions about this don’t matter. The patient’s opinions matter. So if we believe that we are making some exceptional allowance to not hurt patients’ feelings, well, we should. If we feel as though we’re going above and beyond so that we’re not misunderstood, we should…

There is no place for blame, obviously, but the language we use can sometimes place blame. The more difficult point, and this is where I sort of hit a wall, is that changing the way we talk is almost as if you’re fighting with windmills…

 

Leave a Comment: