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Illness Communication- Myeloma Requires Expertise

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“This set of communication skills during serious illness (MM) requires expertise and should be regarded as a procedure requiring special training and demonstration of competence,”

From the very beginning of my interaction with the world of multiple myeloma (MM), I’ve found the words, the very language used by oncology to be filled with jargon (confusion lingo). The article below is taking the importance of how oncologist’s communicate to a whole new level.

Years ago I wrote a blog post about how difficult it was for MM patients and caregivers to understand their oncologists. The blog titled “Multiple Myeloma-“Is my Oncologist Speaking a Foreign Language!?”has become a popular post on PeopleBeatingCancer.

Examples of oncological jargon-

  1. Neoplasm: A medical term for an abnormal growth of tissue, which may be benign (non-cancerous) or malignant (cancerous).
  2. Tumor: An abnormal mass of tissue that may be benign or malignant.
  3. Malignant: Refers to cancerous tumors that can invade nearby tissues and spread to other parts of the body.
  4. Metastasis: The spread of cancer from one part of the body to another, typically through the bloodstream or lymphatic system.
  5. Biopsy: The removal and examination of a small sample of tissue for diagnostic purposes, often to determine if a tumor is cancerous.
  6. Staging: The process of determining the extent of cancer in the body, including the size of the tumor and whether it has spread to nearby tissues or distant organs.
  7. Grading: The evaluation of cancer cells to determine how abnormal they appear under the microscope, which can help predict how quickly the cancer is likely to grow and spread.
  8. Chemotherapy: Treatment with drugs that kill cancer cells or prevent them from growing and dividing.
  9. Radiation therapy: Treatment with high-energy radiation to kill cancer cells or shrink tumors.
  10. Surgery: The removal of cancerous tissue or tumors from the body.
  11. Immunotherapy: Treatment that stimulates the body’s immune system to fight cancer.
  12. Targeted therapy: Treatment that targets specific molecules involved in the growth and spread of cancer cells.
  13. Clinical trial: A research study involving human participants to evaluate new treatments or interventions for cancer.
  14. Remission: The disappearance of signs and symptoms of cancer, either temporarily or permanently, in response to treatment.
  15. Palliative care: Supportive care focused on improving the quality of life for patients with serious illnesses, including cancer, by managing symptoms and providing emotional and spiritual support.

I think most MM patients can relate to this early challenge.

When I wrote about MM speak as a foreign language, I was talking about the terms such as stringent, partial, resistance, etc. that oncologists use with patients every day.

The communication skills that Anthony L. Back, MD is promoting is not about jargon, but about larger concepts such as how to talk to someone with a serious illness.

And because there are few more serious illnesses than multiple myeloma, I would think that Dr. Back would be in favor of MM oncologists getting the communication training that he is advocating.

The bottom line for the newly diagnosed multiple myeloma patient and caregiver, is to expect both jargon in addition to a sort of ineptitude from your oncologist. Expect your oncologist to use the phrase “curative intent” when he/she is talking about your MM therapy rather than saying the your chemotherapy is designed to put you into remission in hopes of extending your life as a MM survior as much as possible.

I’m sure that oncologists want to cure your MM but please understand that I know of no MM patient who has ever been cured by chemotherapy and radiation.

Have you been diagnosed with multiple myeloma? What stage? What symptoms? Are you confused? Angry? 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:

Clinician Talk Training Is ‘Game-Changing Experience’

“Now a professor at the University of Washington, Seattle, Back is on a mission: to educate every physician who treats people with serious illness how to communicate with their patients in a meaningful, fruitful, and compassionate way.

“This set of communication skills during serious illness requires expertise and should be regarded as a procedure requiring special training and demonstration of competence,” he said.

There is a great need for such training.

In a special article published online in the Journal of the American Geriatrics Society, Back and his team estimate that some 220,000 physicians and advance practice providers could benefit from training.

It’s important for clinicians to understand that communication skills are different from doctoring skills and that they can be learned, Back emphasized….

“People get into habits and keep doing the same thing, and when that strategy doesn’t work, instead of saying, ‘I need to change,’ they say, ‘That patient doesn’t get it, the patient is the problem,’ and tend to blame patients…

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