Would you get a Laryngectomy or stay with a Trach? How to cope?

Posted by suz22 @suz22, Apr 8, 2021

Hello members.
I've had cancer twice. 1st one was if the left vocal cord. 2nd one was in April 2018 base of the tongue and left tonsil. That was was a large tumor. I had radiation and chemo treatments.
I'm on a permanent FT, and trach. It really has been a difficult journey this last time around. Not being able to drink, or eat is tough. Plus, I can only whisper. Some people can hear me which is good. I've had a second opinion too. My ENT said I need a larengectomy, which I'm too scared to do. I just don't have faith in my medical team, sorry to say. I think this last time I was "over radiated", thats why all my issues. If anybody has any suggestions on how to cope or would like to know how many of you would remain on tubes, or get a larengectomy? With one, you would have to chew your food many times before swallowing, and you would have a microphone to speak. You would sound jechanical. Just horrible. Well, thank you for reading!

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

Colleen Young, Connect Director | @colleenyoung | Apr 9, 2021

Such a tough decision, @suz22. And I can understand your hesitancy if you do not have complete confidence in your care team. Have you considered getting a second opinion at Mayo Clinic? Here's more information about appointments at Mayo Clinic http://mayocl.in/1mtmR63

In the meantime, you want to connect with others who know first hand about feeding tubes, trachs and laryngectomies, so I'm tagging
@jeffk @jbhart38731 @msherfinski @phinken @jano @alpaca @loli @gaybinator @deborahe to name a few - some of whom have had their cancer care at Mayo Clinic. You can read more here:

– Complete laryngectomy https://connect.mayoclinic.org/discussion/complete-laryngectomy/
- Laryngeal cancer (recurrence) https://connect.mayoclinic.org/discussion/laryngeal-cancer-recurrence/

Suz, when do you have to make your decision?

Maureen, Alumna Mentor | @alpaca | Apr 9, 2021

@suz22 This is an awful decision and it seems to me that you need more information. Would having a laryngectomy enable you to eat again? Laryngectomees can usually learn to speak quite well with a speech valve linking the trachea and the oesophagus and they don't usually have trouble eating unless there's a lot of scarring from radiotherapy. Of course there is also the matter of keeping the cancer at bay and if both opinions you have received think this is the safest bet, you probably need to consider that. The microphone speech is robotic if you had to use that option but some patients learn to use it well. I wish you well. x

suz22 | @suz22 | Apr 10, 2021

In reply to @colleenyoung "Such a tough decision, @suz22. And I can understand your hesitancy if you do not have..." + (show)

Hi Colleen,
Thx for responding. Thier is no time limit for a decision to get larengectomy. Totally up to me, and can get it when I ask. But really don't think I will change my mind. The fear overcomes me.
And I appreciate you reaching out to other members. Alot of my friends tell me I'm a very strong woman. I don't think so. But not to be able to eat, drink, or speak is very depressing. Plus, I have absolutely NO family support or compassion. But do have 1 cousin, and my b/f. Otherwise probably would of given up long time ago. Also have a few close friends that kerp in touch with me.
Thx again for answering!

God bless,
Suz

jeffk | @jeffk | Apr 14, 2021

Two things that helped me through my cancer journey, was a never ending Faith in my medical team at Mayo and it always provided me with Hope that together we can and ultimately did make things better. I was truly blessed to end up free of cancer for over four years. I urge you again to get other opinions and find a doctor that you are comfortable with and believe in. God Speed.