FAQ39: What Should Medical Community Know About "Laryngectomees"?
by Dutch Helms
While probably ALL potential ENT's, Otolaryngologists, and SLP's get SOME training in or exposure to "treatment of larynx cancer and laryngectomees," it is but a SMALL PART of their overall training programs, given the breadth of issues that they must be prepared to deal with in their careers. The "general medical support" community (regular doctors/nurses, etc.) probably get LESS exposure.
As they then go into regular practice, and unless they work at a major cancer center that deals routinely with laryngectomees, many may go years or DECADES before they even SEE or TREAT a laryngectomee. At that point, the chance that they remember all the details of their modest "laryngectomee training" of years ago is SLIM at best. For example, in the Houston metro area, I am my Primary Care Physician's ONLY current lary patient ... and the first one he has had in the past nine years. I am my ENT's only current lary patient ... and the first he has had in past five years. My current ENT is now comfortable with "laryngectomee follow on care," but has not performed an actual Laryngectomy operation for four years and now refers all such operations to the "experts" at MD Anderson in downtown Houston. The point is ... we are RARITIES ... whether we like it or not.
Given this, it is in our OWN SELF-INTEREST to be our own best advocate for our "care and treatment." A friend of mine once said that visiting the average hospital or the average family doctor as a "laryngectomee" was roughly the equivalent of taking your prized, used, imported Austin-Healy Sprite to your local GM or Ford dealer for maintenance/repair/service. Are they good mechanics? Yes! Are they professionals and do good work? Yes! Do they know all the "ins and outs" of your Austin-Healy? Probably not! They will likely need to "look things up," special order strange parts, and undergo some "on-the-job" training.
Anything and everything we, as laryngectomees, can do to HELP our medical personnel treat us appropriately and correctly is, again, in OUR OWN SELF-INTEREST. And we should be fully prepared and willing to do it. As David Blevins accurately pointed out: "We constitute .00018 percent of the general population (based on the figure of about 50,000 larys in the US within a population of 280,000,000)." How knowledgeable would YOU be about an issue that you never encountered in 99.00082% of your life's experience?
So .. to beat this dead horse one last time ... it is in OUR OWN BEST INTEREST to be prepared to serve as our own advocate when we seek medical care, recognizing we are a very tiny majority that requires a modicum of "special care" ... care that may well be strange or unfamiliar to those to whom we turn for treatment. To do less would ignore reality and might even jeopardize our very lives.
Hope this helps.