Internet Laryngectomee Support
December 2002
Internet Laryngectomee Support
December 2002
It got to the point where he could not walk across a room without having to
sit down to catch his breath. Finally he was rushed to the hospital after
passing out. The initial diagnosis was a probable lung infection. But a few
days later, in February, 1997, a laryngoscope showed the need for emergency
surgery. As luck would have it, ENT surgeon Dr. Mark Singer (co-inventor along
with Dr. Eric Blom of the modern TEP voice prosthesis), was on call that
Saturday. Although he did not know it at the time, he subsequently discovered
that he could not have been in more capable hands. 
After the surgery Nat also worked with and befriended Dr. Singer's SLP
(Speech-Language Pathologist) colleague, Dr. Carla Gress (who has subsequently
moved from California to Virginia). Nat did not speak for seven months and was
limited to what he could write down on a tablet. But then, after passing the
insufflation test* to see if he was a candidate for the TEP, Dr. Singer did his
puncture procedure and installed his prosthesis. He was fortunate to be among
those who speak immediately
one of
the bombers in which Japanese Admiral Yamamoto was traveling after the U.S. had
broken the Japanese code and learned of his travel plans. The shooting down of
the plane was viewed as "payback" for the role the Admiral had played in the attack on Pearl Harbor. The painting depicts one of the Japanese bombers going
down after being hit by gunfire from Captain B. F. Holmes' P38G "Lightning"
fighter near Bougainville Island in the south Pacific.
Nat Quick can be reached at
n.quick@comcast.net
* An insufflation test is conducted by
an ENT physician prior to the TEP (Tracheo-Esophageal Puncture) surgery. The
TEP surgery creates a passageway between the trachea (from just inside the
stoma,) and through to the esophagus. A prosthesis, which is simply a small
hollow silicon tube with a one-way valve on the end which is in the esophagus,
is then installed in the puncture tract. With the insufflation test, air is
injected down the patient's nose via a tube connected to his or her stoma, or
mechanically by a pump. The goal is for the patient to direct this air upwards
to vibrate the upper part of the esophagus. If unsuccessful, additional work
may be required to relax the muscle surrounding the esophagus, etc. See graphic
and expanded explanation of the insufflation test on page 14 in the September,
2002, issue of the IAL News,
http://www.larynxlink.com/Main/newslett.htm.
Summary of Head and Neck Cancers -
Larynx Cancer
An article appearing in the
November issue of the Cancer Control: Journal of the Moffitt Cancer Center
by Muhyi Al-Sarraf, MD, summarized the treatment during the last
decade of locally advanced head and neck cancers including cancer of the
larynx. Despite the fact that the incidence of head and neck cancers has
generally increased over this time period, overall survival rates have improved
as has quality of life along with the preservation of organs including the
larynx. One encouraging statistic is that patients with head and neck cancers
have enjoyed the greatest decline in mortality rates for cancer during the
period 1990-1997. Further improvements are expected as a result of the
development of new chemotherapy drugs, drug combinations, combinations of drugs
given along with radiation therapy, treatments which better target just the
tumor, and better sequencing of various treatments.
The drug cisplatin enjoys widespread use in combination with radiation
since it acts to make cancer cells more vulnerable to radiation and since it has
fewer side effects than many of the alternatives. Some other cancer drugs have
mucositis (inflammation of the mucus membrane such as in the trachea,
esophagus, or stoma) as a side effect. Dr. Al-Sarraf reports that at the
present time cisplatin given by itself on a three week schedule is the most
common drug given in combination with radiation in the U.S. Another common drug
given along with radiation is carboplatin.
For patients with inoperable cancers (called unresectable tumors),
the standard treatment is now chemotherapy along with radiation. Radiation
alone has been shown to be inadequate. Many treatment centers give an initial
dose of chemotherapy, and then combine radiation with chemotherapy.
The conventional treatment for advanced larynx cancers was surgery or
combination of surgery and radiation. Dr. Al-Sarraf reported that patients who
respond well to a cisplatin-based combination chemotherapy continue to respond
favorably to radiation therapy. However, those who do not respond to the
chemotherapy also tend to not respond to radiation. As a consequence, he and
his colleagues offer chemotherapy first to patients with advance stage larynx
cancer. Those who do not respond go immediately to surgery. He concluded by
stating that induction chemotherapy (given initially) combined with concurrent
chemotherapy along with radiation was the best non-surgical approach to dealing
with later stage larynx cancers.
It should be remembered that Dr. Sarraf's report applies to later stage
tumors and not stage one cancers where radiation has been a successful treatment
when used by itself.
Cancer Sucks!
by Tammy Wigginton, CCC/SLP
The other day I was telling a colleague that a mutual laryngectomee patient
of ours was going to have a biopsy next week. The doctor observed a "suspicious"
growth during her routine otolaryngology follow-up. My colleague said, "Oh that
is so sad, so unfair. You know she never even smoked." I didn't say anything
at the time, because frankly I didn't trust myself. However, I thought to
myself "If she had been a smoker would the circumstances be somehow less sad?"
I find I am equally saddened when a person is diagnosed with laryngeal cancer
regardless of his/her social history.
It seems the general population, and perhaps even health care workers, have
less empathy for head and neck cancer patients/survivors than they do for other
cancer patients. This seems very unfair to me in light of the fact that we have
all made poor lifestyle choices that may or may not negatively affect our health
somewhere down the road. We all know tobacco is unhealthy. We all know we
should avoid excessive alcohol consumption. We know we should exercise, watch
our diets, get at least eight hours of sleep at night, drink eight glasses of
water a day, reduce our stress, and get annual checkups. Yet, how many of us
always do exactly what we should do? Not many of us, and I include myself. How
many of us know people who reportedly had "healthy" lifestyles and developed
some sort of cancer anyway? How many of us know people who make all the wrong
lifestyle choices and yet manage to outlive most of their friends and family
with "healthy" lifestyles?
Many people would like to believe they will never have to worry about
throat cancer because they do not smoke and they drink in moderation. Yet, I
have seen plenty of laryngeal cancer patients who quit smoking thirty years ago
or who never smoked or drank alcohol at all and "mysteriously" developed throat
cancer. Minutes into a preoperative consultation, people have informed me "I
never smoked!" as if to imply, "God or the Universe has made a terrible error."
"I don't deserve throat cancer. Only smokers get throat cancer." I have also
counseled people who have made unfortunate lifestyle choices that may have
contributed to the development of their throat cancer. Many of these people
hang their heads in shame and tell me "I smoked a pack a day for 30 years."
This implies to me that they feel as they are "being punished by God or the
Universe" and they feel as if they "deserve throat cancer." As far as I am
concerned, in the "laryngeal cancer boat" there is no "nonsmoking or "smoking"
sections. All laryngeal cancer patients are in the same boat and deserve the
same degree of empathy and compassion regardless of their tobacco/alcohol
history.
Over the years I have observed my head and neck cancer patients in the
company of others. Without fail they are asked, "Did/do you smoke? Wouldn't it
be nice if life were that easy? I don't think laryngeal cancer patients should
feel any more or less guilty than any other cancer patient. In general, only
head and neck and lung cancer patients are expected to respond to smug questions
by nonmedical personnel regarding their tobacco history. Does the general
population ask breast or prostate cancer patients "did you smoke?" Do people
routinely ask colon cancer patients whether or not they "ate plenty of leafy
green vegetables?" No! That would be considered impolite and very
insensitive. However, it is perfectly acceptable for a complete stranger to ask
a laryngectomee "were you a smoker?", i.e., "Isn't it YOUR OWN FAULT that you
developed cancer and lost your natural voice?"
Unfortunately, or fortunately, cancer is not fair. Cancer is just a
disease, not a social indictment or punishment. If we all got exactly what we
deserved based upon our lifestyle choices more than a few of us would be down at
the cancer clinic and/or the free clinic on a routine basis. NOBODY deserves
cancer no matter what lifestyle choices he or she may have made. Do smoking and
excessive alcohol use contribute to the development of laryngeal cancer? We
believe it does. However, there are also other factors involved in the
development of cancer: heredity, exposure to environmental toxins and irritants,
gastroesophageal reflux disease, etc.
My general advice to my smoking laryngeal cancer patients is: "Nobody
deserves cancer. If you have made poor lifestyle choices, forgive yourself.
Concentrate on your recovery. Make better lifestyle choices and begin today by
putting your past behind you. Guilt is a useless emotion. It is a waste of
energy and will hamper your recovery. Focus on the positive. " I give my
nonsmoking/non-drinking laryngeal cancer patients pretty much the same advice:
"Nobody deserves cancer. Don't waste a lot of energy trying to figure out "what
you may have done wrong" or "what may have caused this." We may never know.
Continue to make healthy lifestyle choices and continue now by putting worry
behind you. Worry is a useless emotion that will hamper your recovery. Focus
on the positive."
When someone asks me about the tobacco history of one of my laryngectomee
patients/friends, I ask them "does it really matter, because cancer is cancer."
A new laryngectomee friend of mine has a bumper sticker on his car that really
sums it up: Cancer Sucks!
Tammy Wigginton is a speech/language pathologist at the University of Virginia
Medical School in Charlottesville, Virginia, and she is a member of the
International Association of Laryngectomees Board of Directors. She can be
reached at
Tammywigginton@cs.com
The Other Artificial Larynx- the
Pneumatic
The word "pneumatic" comes from the Greek word pneumatikos, meaning
air or breath; pneumatic devices are those powered by air, and pneumatic
artificial larynges are powered by the exhaled breath of a laryngectomee.
The cup-like part of the pneumatic AL is put over the stoma and you breathe
out. Your exhaled breath vibrates a reed or rubber diaphragm and a tone is
produced. This tone is then transmitted via a vinyl tube into the back of your
mouth. You then use your teeth and tongue as usual to form the various sounds
of speech. This is the same idea as the electric larynx which conveys the
electronically produced tone into your neck or mouth via an oral adapter or from
an intraoral AL such as the Cooper-Rand. But you produce the tone by supplying
the air pressure to vibrate the reed or membrane.
Probably the best known pneumatic artificial larynx is the "Tokyo." The
story is that an American laryngectomee member of the merchant marine, Al St.
Germaine, got the idea by playing around with a party noise maker and tubing.
He took the contraption he had invented ashore in Japan and found someone
interested in further developing and producing it. The "Tokyo" is technically a
far cry from his original idea, but its design has survived through the years
and been widely imitated.
When it was available, the Tokyo cost over $100. As far as we know and at
this time, the Tokyo is no longer available in the U.S. The previous
distributor, Clyde Welch in Iowa, retired. A significantly less expensive
pneumatic costs about $30, but is currently only available in Japan. At the
present time the only pneumatic AL readily available in the U.S. is the ToneAire
II from Communicative Medical. The current sale price is $50.
speech. A major advantage of the pneumatics over
electronic ALs is that to use them requires lung power. Unlike electronic ALs,
regular use should help retain breathing capacity.
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Welcome New Members
We welcome the 23 new members who joined us during
November 2002:
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Stanley Bates Winston-Salem, NC esrobot@bellsouth.net |
Ronald Batty Balderton, Newark, UK ronald.batty@ntlworld.com |
Bernard Beetles Fleetwood, Lancashire, UK bernardwbeetles@onetel.net |
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Michael Capelle Elmhurst, IL mjcap12@addressisp.com |
Tom Clark Channahon, IL TGCL47@aol.com |
James Cochran Olive Branch, MS lighthouse_ms@msn.com |
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Maurice Cullen Macroon, Co. Cork, Ireland cullen4@eircom.net |
Bryan Edmands Leeds, W. Yorkshire, UK Bryanedmands@aol.com |
John Egan South Orange, NJ tillou305@cs.com |
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Elizabeth Farrant Cowley, Oxford, UK lizfarr@ntlworld.com |
Mary Glisson Bainbridge, GA scamper@vol.com |
Tony Hicks Liverpool, UK Jim68Jan234@aol.com |
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Arthur Jacobs Omaha, NE lindjac1@aol.com |
Dr. Peter Lee Northwood, Middlesex, UK Leeonics@aol.com |
Gloria Lokos Lacey, WA glorialokos@msn.com |
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Gerald Moore Redford, MI ghmoore@mailstation.com |
George Olsen Gardnerville, NV olsenbng@pyramid.net |
Venus Radford - Caregiver Terrace, BC, Canada bugfly@telus.net |
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Mary Silvestri - Caregiver Central Village, CT myattsil@hotmail.com |
Suzanne Walters Buffalo, NY TutuBapa@aol.com |
Charles Wardell Mesa. AZ straw57berry@worldnet.att.net |
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Mike Warren Spalding, Lincolnshire, UK mike@warren1847.fsnet.co.uk |
Mary Wegener Chilliwack, BC, Canada ahaus1923@hotmail.com |
