FAQ16: Partial or Total Laryngectomy?

by David Blevins

The following is a copy of an Email sent by WebWhispers member David Blevins to couple contemplating an upcoming partial or total laryngectomy, raising points that might be considering in weighing the various options.
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This has to be among the most important decisions ever thrust upon you. And it is coming at a time when making a calm and totally rational decision is far from easy.

One thing to keep in mind is that the membership of WebWhispers is almost all laryngectomees, meaning we no longer have a larynx. Only a tiny percentage of us would be individuals who had a successful partial laryngectomy. You would anticipate that most individuals who had partial laryngectomies went back to their pre-cancer lives and did not feel the need to join a group like WebWhispers. Indeed, you are more likely to encounter individuals within our group who initially had a partial, but ended up having a cancer recurrence or a new cancer site and having the remainder of the larynx removed. So it is important to understand you are not likely to get balanced recommendations from our group because our experiences were either negative regarding a partial laryngectomy, or it was not an option for us. I was told that I was not a candidate for a partial.

What follows are some opinionated thoughts on the issue which you may wish to take into consideration as you make the decision:

ENT surgeons favor the total laryngectomy because it is an easier operation and it has a higher long term success rate than the partial laryngectomy. I do not recall the exact numbers, but the long term success rate for a total laryngectomy is probably in the neighborhood of 90% (success being defined as being cancer-free five years after the operation), while the rate for a semi-laryngectomy may only be, for example, 65%. 

However, by having the partial laryngectomy you get the following major benefits (1) you continue to breath through your nose and mouth. Other than the loss of our pre-cancerous voice, this is probably the biggest problem for laryngectomees...the consequences of breathing through a hole in our necks. By continuing to breath through the mouth and nose you retain the critically important functions of them in breathing...to warm, humidify and filter your incoming air. You also do not have a hole in your neck which causes you to need to keep it covered. You are also less safe around water as a neck breather than a mouth and nose breather. By continuing to breath through you nose you also retain the ability to smell. The ability to smell is greatly reduced, or essentially non-existent in larys. (2) you retain a voice which is more likely to have good volume and be more like the pre-cancerous voice than the kinds of voices laryngectomees use. Different outcomes are possible for individuals, but the generalization usually holds.

If a partial laryngectomy had been an option for me I would have jumped at the chance. But for me retaining the maximum quality voice was terribly important, so I would have happily assumed the greater risk of a recurrence and opted for the partial. But this is very personal and individual. The oral communication needs of your husband should be taken into account.

On the other hand, it is pretty common for people who are facing a laryngectomy to think (at least for a time) that this is basically the end of life as they knew it. This is not true. I highly recommend that you and your husband talk one-on-one with a fully recovered larygectomee. You canget the name of the closest support group on this web page: http://www.larynxlink.com/Main/clubmap.htm Talking to one or more fully recovered laryngectomees will help you visualize the consequence of the total laryngectomy. I conclude with a copy of an e-mail which I have sent to individuals facing a laryngectomy, or those who just had the operation:

To A Laryngectomee-to-be, or a New Laryngectomee:

Despite all of the medical progress made, the word "cancer" is still
pretty frightening.

But having dealt with radiation and then the surgical removal of my
larynx, I think that some of the most important messages I would want to
convey to a new laryngectomee are:
  1. This is NOT the end of the world. Cancer of the larynx has one of the
    highest cure rates for any cancer. The odds are WAY in your favor that this
    cancer will be removed, will not return, and you will live.

  2. You will speak again, although the specific means you will use may not be
    known right from the beginning. One irony is that many laryngectomees can
    speak in several different ways. For example, before the cancer I could only
    speak using my larynx. Now I can talk using the artificial larynx and the
    TEP prosthesis. There are some of use who can also use esophageal speech.

  3. Not only can you survive this, you can also "thrive." Although I
    certainly had fears about whether I could or not, I returned to my full-time
    job as a teacher, and I know lots of laryngectomees who work at jobs
    requiring that they speak including lawyers, preachers, auctioneers,
    salesmen, and other teachers.

  4. While I certainly miss my old vocal cords I do not consider myself to be
    "handicapped". I think the word "inconvenienced" sums up how I feel now. I
    have a few more daily "maintenance" jobs to add to showering, shaving and
    brushing my teeth; but that is basically it. I also have a couple of
    additional things to remember to bring with me when I leave the house besides
    my wallet and keys.

  5. It helped me so much to talk with other laryngectomees before the surgery
    and afterwards. I am also so glad that I joined my local laryngectomee
    support group, and also joined the WebWhispers Internet support group. I am
    now active in both, and in the International Association of Laryngectomees. 
    It is helpful to know that you are not alone, that others have faced what you
    are facing and can help you through it, and provide you with living examples
    of how you can successfully survive all of this and move on to a full life.

  6. Physical healing takes time. Healing from a laryngectomy is not measured
    in days or even weeks, but in months and even years. So do not assume that
    the problems you have early on after the operation will continue. You will
    get better and better; but gradually. It is fairly typical to also "mourn"
    the loss of our voices, and it takes awhile to get over the trauma of all of
    this. And mourning is perfectly ok, it is also part of the healing process. 
    You might need some professional help to deal with the understandable
    depression this may cause. But do know that there is life, and a full one,
    on the other side of this healing process.

  7. If you can do so, try and retain your rights to return to your job after
    you have healed. Many employers will be ignorant about cancer survival and
    assume you will not be able to do whatever the job requires. And you may be
    pressured to resign or retire early. If possible, avoid making any
    option-ending decision at a time when you are vulnerable. You may have to
    educate your employer on what a laryngectomee can still do.

​I am 95% the same as before my cancer. The 5% is really no big deal now
unless I focus on that instead of the 95%. Part of the healing process
involves an improvement to that 5%, but also changing your focus back to what
you do have and can still do. There are actually several advantages to being
a lary. Just a couple are that it is now impossible for you to choke on
food, and also impossible to snore.

Best wishes to you. If you are fortunate, you will get the support of
good professional help and other laryngectomees who have traveled the path
you are on. Please feel free to ask any question you have. And having a
hand or two to hold while we travel in unfamiliar territory is a big comfort.

Regards,
: )o
David