I had a sarcoma on the larynx debulked 2 weeks ago because I was struggling to breathe. I’m still a fortnight away from starting radiotherapy but I’m worried that I am again suffering shortness of breath and concerned. that I might need further surgery to prevent obstruction of the airway.
My biggest concern is that once radiotherapy commences one of the side effects seems to be soreness and swelling of the throat. If I’m struggling to breathe now how might that progress and what is the likely medical response? is my problem common? Might I require a tracheostomy and if so what does that mean in practical/pragmatic terms? Consultants are all very positive but short on practicalities. What can I expect going forward?
Hi Nigel.
I have no personal experience but I do know of others who have had temporary tracheostomy after surgery. Hopefully someone might see your post and reply.
Can you ring your CNS for advice. They are often much better at practical help than the consultants.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
https://todaymycoffeetasteslikechristmasincostarica.com
Good evening Nigel, i think the trouble is nobody knows how you are going to react to the radiotherapy so there are lots of questions with no definate answers, If the worse happens they can do a tracheostomy as this will make sure you can breathe properly , i have had two while i recovered from surgery and they are a bit uncomfortable to begin with and takes a bit of getting used to. Im not sure what is involved with larynx debulking, what ever happens you will be in good hands and they will know how to react if breathing/swelling becomes an issue. They can always stop the radiotherapy if it becomes uncomfortable. I wish you all the best with your continued recovery,take care.
Chris
Its sometimes not easy but its worth it !
Thank-you all. I’m seeing the ENT Consultant on Wednesday to work through my concerns and see if I need to have another debulk (reduction of the tumor) before radiotherapy starts. The thought of having a tracheostomy scares the life out of me but if it has to be then so be it. Stopping radiotherapy isn’t an option. I need to get rid of this thing. 
Good luck with your appointment with the ENT consultant.
Chris
Its sometimes not easy but its worth it !
