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Pacific Northwest Laryngectomy Conference

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I was privileged to attend the PNWLC held at Oregon Health and Sciences University (OHSU). Over the next couple of days I will be relating some of the insights gained:

The biggest insight was the extremely proficient use of the electro larynx by many of the patients. The speech was loud and clear. Up to this point, I thought that the devices only produced hard to understand speech. I was clearly wrong.

There were about 20 patients, and they were divided between users of the electro larynx and the TEP prosthesis. I was the only patient who attempted esophageal speech. My TEP prosthesis was also working, and I divided my own speech between esophageal and TEP.

However, the patients who used the electro larynx had the best voice for medium to big rooms. The electro larynx was better than even my speech therapist, who has excellent esophageal speech. I can't tell you how surprised I was.

I will add more tid-bits about the conference in separate posts. Rick.

hwt's picture
hwt
Posts: 1906
Joined: Jun 2012

Interesting....thanks for sharing. Look forward to additional posts.

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

From an otolaryngologist at the PNW Laryngectomy Conf.: The rate of cancer recurrence for patients treated with total removal of the larynx is 5% per year for the first five years. After five years, very small chance of recurrence.

Also: since smoking is a factor in most laryngeal cancers, if a cancer returns, it could be in any area that the smoke reaches including the lungs. Reasoning: If a patient received enough smoke to trigger a cancer on the larynx, he/she probably received enough smoke to trigger a cancer in the lungs.

Great insights to think about. Rick.

Mrs. Sarge
Posts: 198
Joined: Apr 2012

I only had Stage 1 of the true vocal cords, with 1 recurrence (from insitu) but was wondering if you have seen any prognosis for someone who's never smoked, but probably abused my voice singing/praying/talking? I was told that IF it recurs that I could possibly be in your shoes with a total laryngectomy, so I am holding my breath, almost!

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

No Stats but I'll keep looking.

I also am a non-smoker. But I was born in the early '40s, when everyone smoked. In the late 1950's, I believe I was the only adult passenger on a domestic flight who was not smoking. Also I grew up in a multi-flat house, occupied by relatives. My father, his brother, and his mother were all chain (3-pack/day) smokers. They each seemed to light a new cig, as soon as the current one burnt out. And the three families spent a lot of time together. Gatherings of the extended families often grouped me with 20 or more smokers.

So I don't think I needed to smoke myself. There was enough smoke in the environment. I think that most of us in our 60's or 70's are smokers whether or not we ever put a cigarette in our mouths.

Sorry for the rant. Rick.

A word about losing the vocal cords. There are three ways to restore speech: esophageal, voice prosthesis (see Atos), and electro larynx. (I prefer esophageal speech, but this is a very individual choice.) Virtually everyone gets some level of functional speech back in a couple of months.

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Actually, I remember back to the beginning of my treatment road. Both my radiation oncologist and the American Cancer Society stated that there is a 10% chance that Stage 1 laryngeal cancer will return and a 25% chance that stage 2 laryngeal cancer will return.

My radiology oncologist said that my cancer hid in the cartalege, where it is hard to detect and/or treat. Therefore when it returned,there was no option but take everything out.

I wish you could have attended the Pacific Northwest Laryngectomy Conference. There, you would have met a dozen laryngectomees who have made a great adjustment to their new bodies. It seems impossible, but it's really quite manageable. Rick.

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