HEADLINES

Kirklin Clinic Head & Neck Cancer Support Group,  Birmingham, AL

distributed by American Cancer Society

Pat Sanders, Editor

Jan 2003

 

 What’s new with surgical treatment for laryngeal cancer?

 

 

Two new surgical options for treatment of laryngeal cancer have recently become available in the US. Both were imported from Europe and will probably be permanent additions to our treatment options.

 

The first procedure, supracricoid laryngectomy, was developed in Paris primarily by the Drs Laccourreye. As you know, a total laryngectomy has been necessary for removal of extensive laryngeal tumors. Smaller laryngeal tumors have often been removed safely with a partial laryngectomy; preserving natural speech and avoiding a tracheal stoma. Supracricoid laryngectomy expands the number of patients that can have a partial instead of total laryngectomy. It is an extended partial laryngectomy that allows complete tumor removal while preserving speech and avoiding a permanent tracheostomy. 

 

Supracricoid laryngectomy removes more of the larynx than previously thought possible while maintaining function. Previously, when a cancer was invading the deep laryngeal muscle or was extending from the supraglottis (above the cords) down to the vocal cords, a total laryngectomy was often necessary. Supracricoid laryngectomy removes all of the tissue between the hyoid bone and the cricoid cartilage. All but the most posterior portion of the vocal cords are removed. A tracheotomy tube is left in place for only a short period postoperatively. A feeding tube is necessary and learning to swallow safely is the most difficult challenge postoperatively. With much of the normal anatomy removed, there is less protection of the airway when swallowing and aspiration (getting food into the airway and lungs) is a real risk.  The voice quality after supracricoid laryngectomy is very breathy and hoarse but is usually easily understood.

 

The second surgical procedure is endoscopic laser excision of laryngeal cancer. This procedure has been used for many years in the US for very early cancers. A German physician, Dr Steiner, has shown that the laser can be used safely in many more cases than we previously considered. In this procedure, a laryngoscope is positioned through the mouth to visualize the larynx. (This is the same procedure used to biopsy the larynx under anesthesia). A microscope with laser attached is then moved into position and the cancer is removed internally. Good cooperation between surgeon and pathologist is needed as the margins between normal and cancer bearing tissue are very close. Dr Steiner’s work shows that laser endoscopic excision can produce control rates similar to those with open surgery. There is the possibility of no external incisions and no tracheotomy or feeding tube. US surgeons are eager to see if the results in this country are also comparable with open surgery.

 

Clearly there are limits for both of these procedures and total laryngectomy is still being preformed regularly in our institution. These newer procedures do expand the options available for patients with laryngeal cancer. Experience with these newer procedures is growing in this country and comparisons of outcomes will begin to appear.

 

William R Carroll MD

UAB Division of Otolaryngology

Birmingham, Alabama

 

 

 

A Retrospect

1996 to 2003

 

Retrospect, a noun - Looking back on or thinking about things past

 

Eight years ago, I had just received the unpleasant results of a vocal cord biopsy and was starting radiation, which was followed a few months later by a laryngectomy after it was apparent the radiation had not stopped the cancer.

 

Seven years ago, I was working on the first issue of HeadLines newsletter, which was a “Come to the meeting” notice for the local group and, at the suggestion of another member of the group, I was trying to add ideas to share with other laryngectomees. This was an project that did not have a name or any planned content yet. I asked for help on both of those items in the first “issue” of our newsletter.

 

 How much have things changed since then in our world of laryngectomees? In my compilation of all of the issues, this is the first thing in the book.  It is from February, 1996.  Look familiar?

Humidify-----------Humidify-----------Humidify-----------Humidify------------Humidify

 

·         Many of our winter time problems are caused by a lack of humidity, so be sure to have a humidifier by your bed.  Breathing the moist air can relieve mucous and cough.

·         A small atomizer filled with clean water can be used to spray on your stoma cover when you are in an area where you can’t control the humidity, such as in your automobile or in a room where you don’t have a humidifier.

·         Wear your stoma bib.  It helps to catch and hold moisture as you breathe.  If you are raking leaves, woodworking , vacuuming or anything that raises dust, dampen your bib so it will clean the air for you.

·         You may purchase foam filters for use with or without appliances.  There is a new one for in-dwelling that you can change once a day.  One of our members says he has hardly coughed since he began using it.

·         Drink lots of water

 

There is not much change in what we write now about humidity except there is even more information available about the value of moisture for a healthy stoma. There is a bigger variety of stoma covers now and colors have come alive. The HME has been refined, promoted, and comes in sizes, brands, and with several types of holders.

 

In March, 1996, I wrote about being able to talk on the telephone without having both hands tied up and recommended a headset.  It cost $50.  The last one of these headsets I bought came from an excellent choice offered by WalMart for $10. I bought an entire telephone with optional headset for $30.  Don’t tell me things don’t improve; however, the hint of using a telephone headset to free up your hands is still a good one especially on a portable or wireless.  Lots of changes on these and all of them for the better.

 

In May, 1996, Charles Lamar wrote about planning a kit for travel and told what he always carried with him as his security blanket: Servox with extra battery, Microspore tape (to hold prosthesis strap in place), small scissors, small mirror, surgical tweezers, small flashlight, Kleenex with additional items in another kit: Saline solution or clean water, Syringe with pipette (for irrigation and flushing), complete TEP prosthesis kit, K-Y jelly, Cotton swabs, stoma button, stoma bibs, flashlight and extra batteries.  These are still appropriate years later.

 

In July, 1996, I wrote about learning to use the Servox and after some specific instructions, I stressed that you have to help people to understand you. Get them to look at you so they can see you speak as well as hear.  Don’t try to talk over loud noise.  Signal for the other person to turn off the vacuum, or the radio and don’t try to answer from the other room or even when you are looking in the other direction.  Hand signals, holding up an object or pointing can help someone to understand you.  Use every method of communication and, if you find something that works well, share it with us.  I urged them to use patience in learning, the determination to keep trying and to work at clarity in their speech. There have been many articles written about learning to talk with an electrolarynx with a lot more detail than you are reading here.  There are many types of ALs and they have been improved, but the basic instrument still works the same way for our speech and the old practice-practice-practice advice is still good.

 

In September, we had a great report from Vonda and Robin Bearden who attended the IAL Annual Meeting by accident.  They had planned a camping trip with friends and, when the friends couldn’t go, they decided to go on to Arkansas anyway to visit other friends. One of their first stops was the welcome center in Mississippi where they noticed a Florida couple and the man had a trach.  They were on their way to the IAL convention in Hot Springs and the Beardens were easily persuaded to follow along.  They only had one day to spend, but they said, “It seemed as if the whole world had turned into people with trachs and they were all talking at once.  The noise was unbelievable with some using esophageal speech, some the electronic larynx (like the Servox), some with prostheses and there were many there with normal speech.  We met nice, friendly, people from all over the United States, and there were many from other countries.” The IAL Annual Meeting today is much the same.  Come to Atlanta in June 2003 and experience it for yourself.

 

We finished up the first year with a page of Helpful Hints for Laryngectomees that are worth repeating.

 

·         Try paper towels instead of tissues, which, when damp, fall apart and you can breathe bits into your trachea.  Carry a roll of the select-a-size paper towels in the car with you.  They peel off about a 6” paper towel, which when torn in half is a perfect size for cleaning around your stoma, and it doesn’t disintegrate.

·         Get a good magnifying mirror and light.  Some of the makeup mirrors will do well.  I found an electric light with a snake stand  (at Wal-Mart or K-Mart, $10), so that it can be tilted easily in any direction, and combined that with a magnifying mirror propped up at the right level so that I can see in and around my stoma.

·         You might like to change your regular shower head for a Shower Massage, hand held type.  Especially, when you are a new laryngectomee and nervous about showering, you can use it as a hand held sprayer and avoid your stoma area.

·         Winter is coming  and it is time to remind everyone that we need a humid atmosphere. Put the humidifier by your bed so you breathe  the proper humidity while you sleep.  For daytime use, fill a spray bottle with water and mist your stoma bib so it is always damp.  Carry that bottle with you in the car.  You can even irrigate with the spray, or, if you get a coughing spell, you have a water source to sip.  Just fill the bottle with clean tap water every day, and keep it beside you.  When the heat is on often, due to colder weather, the humidifier needs help, so use the spray bottle at night, also.

·         There are small foam pads, that sell in packs of 100, with adhesive at one end that can be used for filtering and humidifying.  They attach easily to the inside of clothing or stoma bibs.

·         Call for a catalog  to order supplies

·         If you have a TEP, pipettes can be used to easily squirt a small amount of water through the prosthesis (the water goes into your esophagus and on down to your stomach).  This cleans the opening and helps to keep it from blocking up with food or mucous. You can install the end piece of a pipette on the end of a syringe and use more water and  a more forceful flow. (See Headlines, May, 1996)

·         Also, for TEPers,  even though the stoma and trachea are not sterile areas, if you are using your thumb or finger to close your stoma to talk, there will come a time when your hands are not clean and you are not near a place to wash them. You need to have a packaged moist towelette (some gasoline stations have them to use after you pump your own gas) or you can buy dispenser packages of these (there are choices of packaging and types at the grocery or discount store).  Otherwise, remember the handy spray bottle of water that you should take everywhere with you?  Spray your hands and wipe on paper towels.  Don’t take the chance of touching your stoma with anything that might irritate your skin or your breathing.

 

Throughout the year, about a half dozen members of our group contributed while I learned to edit and prepare a newsletter.  We had some personal stories and experiences, good articles on the emotional side of this surgery for both patients and caregivers, helpful articles relating to ways of speaking or everyday care, problems with taste and the loss of some of the ability to smell.  We learned a lot that first year by sharing.

 

Now, what has changed during these years since then?  My first thought is “information”. When I looked for information 8 years ago, I went to the public library and found next to nothing.  There were a few little booklets at ACS (American Cancer Society), based more on having any cancer than on laryngectomees and what we do to learn to live again.. The IAL (International Association of Laryngectomees) might have been able to send information, but there were no brochures available to tell us what the IAL was and where to find them. My computer was installed the day I came home from the hospital in April, 1995, but it was 6 months later that I got online…and believe me, there was not much there either. On CompuServe, they had a cancer forum for people with all types of cancers where I “met” a few laryngectomees and I was able to get advice and sometimes to give it (a habit I never gave up).

 

In 1996, Dutch Helms’ Larynx Cancer group started forming around a web site he had started.  This group became WebWhispers.  The Larynx-C group started in early 1997 and many of us found Dutch’s group from there.  For the first time, we were able to compare notes and learn from each other on a daily basis.

 

There are some differences in treatment, then and now, but it does seem that radiation is more effective and is used in different ways.  Chemo was not used often then but with new discoveries, it has become quite common in treating head and neck cancers and recurrences. People may be saved by surgery that wouldn’t have been attempted a few years ago.  Laser surgery is used more. Due to these improvements in treatment, early diagnosis, and the ability to share information so easily on the Internet, I think more of us are living longer.  We are certainly living better.

 

Everything starts somewhere as an idea in someone’s head.  HeadLines did. WebWhispers did. Larynx-C did.  Your local group did. Support your local group so there will be someone there to help the next person who needs to know where to go and how to live with a laryngectomy and join the online groups to stay in daily touch.

 

 

Happy New Year

And many more to all of us