FIRST - REVIEW THE BASICS
The larynx is the second most common site for cancer development in the upper aerodigestive tract. Approximately 12,500 cases are diagnosed each year. Over 95% of the cancers that develop in the larynx are of the squamous cell carcinoma (SCCA) variety. Deaths from larynx cancer represent only 1% of all cancer-related deaths each year. The overall 5-year survivor rate for larynx cancer is about 68%. The most vulnerable "population" for this disease is males in their 50's and 60's ... less than 1% of cases are in people less than 30 years old. Smoking is one causative factor - smoking 1/2 pack a day increases the likelihood of getting larynx cancer by about 4 times "normal"; smoking 2 packs a day ups your chances to about 10 times "normal". For T1 tumors, XRT (radiation) treatment enjoys about a 90% cure rate; for T2 tumors, XRT treatment boasts about a 70% success rate. Surgery (total laryngectomy), however, for T1 and T2 tumors boasts success rates of 98% and 82% respectively. For the more advanced stages of tumors (T3 and T4), surgery is roughly 80% successful while XRT treatment is only about 50% successful. Therefore, if you have symptoms, your best hope is early diagnosis and treatment!!
CONTACT OTHER LARYNGECTOMEES
Contact the IAL (International Association Of Laryngectomees) or your local ACS (American Cancer Society) to put you in touch with other laryngectomees. Usually your doctor can provide you with the information on how to contact the nearest group in your area. Even if you are not normally a joiner of support groups, you should investigate your local support group for laryngectomees, often called Lost Chord or NuVoice clubs. Some of them provide free materials or can tell you where to apply for whatever equipment or rehabilitation benefits might be available in your area.. Clubs like this frequently get discounted or even free samples from suppliers. However, the most important part of going to a club is the assistance you receive from members who can answer questions, help you learn to talk and assist with other problems. You can find a listing on our site of many clubs, worldwide. The IAL has a similar list of IAL-affiliated clubs.
Join WebWhispers if you have not already become a member.
This site has many pages of helpful information, plus sections with Hints, Suppliers, and Humor. Laryngectomees, caretakers, and professionals can meet on an e-mail list to exchange messages, ideas and support.
American Cancer Society (Home Page)
A current report on Laryngeal and Hypopharyngeal Cancers covering what they are, diagnoses, staging, statistics, treatments, and follow up care. There is also a section on what is new in research and treatment.
This site has all of the current information on the IAL, helpful information, plus newsletters
INFORMATION - EDUCATE YOURSELF
The IAL has publications that are sent out free of charge. These include:
Pocket Emergency Cards
Emergency cards are available in English and Spanish. (Send stamped self addressed envelope and specify language.)
Emergency Window Stickers
These emergency stickers can be used on automobiles or on home windows. They are available in English and Spanish. (Send stamped self addressed envelope and specify language.)
Information about the IAL.
The IAL News
A newsletter that is published 3 times a year. A $5 a year donation is requested but not necessary.
Building A Successful Laryngectomee Club
Information on how to start a club or make your club successful.
Laryngectomee Visitor Program Manual
A training manual for those that want to make Pre or Post Operation visits to new laryngectomees.
Rescue Breathing for Laryngectomees and other Neck Breathers
Available in English and Spanish.
The above can be obtained from:
925B Peachtree Street. NE, Suite 316
Atlanta, GA 30309
Call some of the laryngectomy/medical suppliers, and request their catalogs ahead of time. You may want to pre-purchase a shower collar and some stoma covers or foam filters. Find out what your doctor recommends and what he will furnish so you don't duplicate. Most hospitals send you home with immediate needs. Look under Suppliers for a list of suppliers.
COMMUNICATION WITHOUT A VOICE
Call Inhealth Technologies at 1-800-477-5969 and ask them to send you their free Laryngectomy Needs Chart. This chart is useful during your hospital stay, as well as at home following your discharge. A dry erase marker can be used to add your own additional personal needs to it.
Obtain either a Magic Slate (one of the boards that kids write on and pull up the plastic sheet to erase) or buy a Magna Doodle, available in most toy stores. A pencil shaped magnet is used on the Magna Doodle "screen" to write. A pull knob on the bottom erases it. They come in three sizes. Get the medium or largest size.
Some people recommend obtaining an Electrolarynx before surgery. Please see the Electrolarynx Hint under Post Laryngectomy.
It is especially important if you live alone to make a recording for your answering machine. You might want to purchase an inexpensive recorder and make several, since one can be erased in error. You may also make a message for emergency needs to play after dialing 911 although you should notify 911 that a laryngectomee is going to be living at your address and they will mark your record to check any call from your house. (Katy Lyons)
Familiarize yourself with how being a laryngectomee changes your anatomy so you will understand how everything works after surgery and understand what your doctor tells you. Jot down all questions you may have for your doctors. Bring this list of questions along for appointments. Remember that no question you have is silly or unfounded. Knowledge is Power!! Get copies of your records as you go along, and keep them in a folder at home. This can save a lot of time and stress if you need them for anything later on. Please make an effort to become familiar with all the information available on our General Information page.
If you have children, take the time to explain to them as best you can about what is about to take place, and the changes that will occur. Young children should not be given complicated explanations. For older children, share your books and suitable videos. Let's not forget that our children can be just as anxious and fearful as we are at this time. However, little children adapt to the new laryngectomee unbelievably fast and usually want to try out the electrolarynx. Some toddlers find toys to put up to their necks so they can pretend to talk like their loved one.
TOP OTOLARYNGOLOGY CENTERS
According to the 2006 annual survey conducted by U.S. News and World Report, the TOP FIVE ENT hospitals in the United States are
(1) Johns Hopkins Hospital, Baltimore, Maryland
(2) University of Iowa Hospitals and Clinics, Iowa City, Iowa
(3) Massachusetts Eye and Ear Infirmary, Boston
(4) The University of Pittsburgh, Pennsylvania
(5) The University of Michigan Medical Center, Ann Arbor, Michigan
For the complete listing of the top 50 ENT hospitals in the United States (including their links), as ranked by U.S. News go to the annual survey.
(Note: US News is rating "ENT" programs - that includes all the people doing ear surgery
and hearing research, sinus work, pediatric otolaryngology, etc. So these programs may excel in these other areas, but could actually be marginal in laryngectomy. Thus, recommend you use these "ratings" as a guide only and as one of many "tools" available to you.)
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