Hello - I have not been here for a while.

I am looking for information and advice for my mother that will likely undergo a total glossectomy and laryngectomy shortly. She had a partial glossectomy with reconstruction 10 years ago and unfortunately the cancer has returned.

Chemo and Radiation are not options. She has been on a PEG tube for 1.5 years and does not eat by mouth at all.

I would love to hear from anyone that has had this surgery to learn what to expect (Complications, healing) for the surgery, post surgery and living afterwards (tools to use). Also, any pre-surgery recommendations and what to prepare at home would be helpful.

Her only other option is to do nothing - so this is the better of the two! Looking on the bright side!

Thanks - Jennifer

Hi Jennifer, this is certainly a daunting prospect isn't it? But it is very doable and is so much better than the alternative.
My Husband Kris had this surgery 3 years ago, March 2012. He was 60 years old at that time We were both terrified. However, we tackled this head on and got on with it. Kris is alive and well today.
This was brutal surgery. Kris had to return to theatre on Day 3 to fix a leak in the internal suture site. We had been warned that this could happen due to the previous radiation Kris had had and therefore the poor healing properties of the tissues there. After this, really he had no big setbacks. The tracheostomy tube was removed on about day 5 . He used a humidifier in the hospital to keep secretions moist and easy to cough up. I really recommend that you get a nebulizer. Kris nebulised saline at least 4 times a day for the first 6 months. This is so important to add moisture to the lungs and to keep secretions moist , and easy to cough out. Now, Kris uses the nebuliser every morning , more often only if he feels that he needs it..
Kris spent 4 weeks in the hospital - but our health system in New Zealand is quite different to your own.
Recovery was long and slow. He was very tired for at least the first 3 months and needed me to help with most activities of daily living.
Due to the bilateral radical neck dissection , Kris had many difficulties associated with lifting his arms. Such as dressing himself, driving etc. do make sure Mum gets early physiotherapy to offset this.
Showering was of course a problem. How to stop the water pouring in the Stoma? The Stoma is the permanent hole in the neck left after the Laryngectomy. In the early days I held a flannel over the hole while he showered. He soon discovered for himself how to shower without getting water in, he just tucks his chin down to occlude the hole. There are shower guards that you can buy , but most Lary's dont use them in my experience.
Get your Mum an IPad . Kris uses this to communicate. Download the Speakit app. With this you type what you want to say and then the app will speak it for you. In the immediate post op period a whiteboard and marker pen are really all you need. Kris wrote everything down, he really did not want to use any technology for the first 10 days or so. Some recommend a Boogie Board, check out Amazon or google to find information on this.
I would also ask the Team about communication post surgery. Kris has a TEP - a Trans Esophageal Prosthesis. This was inserted 6 months post surgery. Although it is not perfect, it does work for Kris and our Family in that we understand most of his speech
There is so much I could say, but please check out the following websites for great information.
www.webwhispers.org
Lary's Speakeasy Laryngectomy Throat Cancer group On Facebook
Strictly speaking a Laryngectomy. On Facebook
Laryngectomy Support. On Facebook

These sites give wonderful supportive help for Laryngectomees and I have learnt a lot from them.

Issues around the Total Glossectomy are best understood on this OCF Forum.

Kris is doing wonderfully well. He lives a full and independent life. Although he had to retire due to communication issues, he is busy keeping our 3 acre homestead in shape, does online editing in a voluntary capacity and educates himself with online Uni papers. Life is different, but good.

Please ask me any specific questions you like. I am more than happy to help and advise where I can.

Tammy

Jennifer,

That's some very good advice Tammy gave you. One thing I would add is to contact the Speech Pathologists at the hospital, if you haven't done so already. They will play an important role in the coming months helping your mother learn to speak again. Feel free to also ask me any questions about laryngectomies (I had one 17 years ago) - sorry, but I'm no help on glossectomies.

A humidifier was a big help to me. You might want to get your Mom one if she doesn't already have one. Several of them can be helpful - one for the bedroom and others for any other rooms in the house where she spends time.

Your mom will probably have plenty of mucus "plugs" in her trachea following her surgery. When she's in the hospital, the nurses and respiratory therapists will suction them out but she may need a suction machine when she gets home. I had to use mine frequently for a while.

It will be tough for a while, especially at first, but as you say, it's better than the other option. Wishing the best for you and your mom.

Thank you Tammy and Andrew for this information. It is very helpful. I have also reached out to support groups in our area (Boston) so now the process begins.

Were as her tonuge is also being removed we were told that speaking would NOT be possible post operation. Are there any high end large room humidifiers that anyone could recommend?

Thank you!!!!

Hello again.
I do not think that information on speaking is correct.
Kris has also had his entire tongue removed. Our team always told us he would speak again. He does speak.
An Electrolarynx does not work in this type of patient. But a TEP does have value. This was inserted 6 months post surgery to give the tissues time to heal. Kris was able to make sound immediately this was inserted. He then worked with a speech therapist to help him get clearer speech. We understand about 90% of what he says and this method of speech has proved invaluable for us both. Yes, sometimes he does resort to pen and paper, but mostly he speaks. It is gravelly and gurgly, but it works.
Do ask the team specifically about the TEP for the future.
Is your Mum being treated at a Comprehensive Cancer Centre? A CCC? These hospitals have the experience of dealing with complicated patients like your Mum on a daily basis and research proves that they have better outcomes and quality of life for their Patients.
I would not be happy if the team said speech would not be possible. It most definitely is.
Tammy

Jennifer, I believe I have also read stories on this site of others with glossectomies who have regained their speech.

Have you gotten a second opinion? If it was me, I would definitely get at least one more, to find out if there are other doctors in your area who say speech again is possible.

Tammy is completely right about a CCC, a Comprehensive Cancer Center. That's the first place I would go for a second opinion and you have one there in Boston, the Dana-Farber/Harvard Cancer Center.

Re the TEP, Tammy referred to it as a "Trans Esophageal Prosthesis", here in the U.S. it stands for tracheoesophageal puncture, which is the name of the surgery which is done before the prosthesis can be used. It's a simple procedure; the doctor simply punctures a small hole in the wall between the trachea and esophagus. When mine was done, I checked into the hospital in the morning and was back home that afternoon. They placed a catheter through the hole to keep it from closing back up and to allow the tissue around it to heal. About 10-14 days later, the Speech Pathologist removed the catheter and inserted a prosthetic valve (there are several different types). As soon as he had it in, I was able to speak immediately. Eureka!

Re your humidifier question, I use a Crane model EE-5200W that's worked well for me for quite a few years. It's a good model for the bedroom and I refill it every night before bedtime. It probably wouldn't work quite as well for a large room though.

Hope that helps. I'm glad you've reached out to support groups in your area. Best wishes and hang in there.