Laryngectomy, to be or not to be.
Hi, I am hoping some of you may be able to give me some first hand knowledge on having my Larynx removed!
After nearly 4 years initially which included 35 rad treatments and Chemo for 7 weeks I was given an initial diagnosis of possible remission. The problem being a very large squamous cell carcinoma and in stage 4. Many follow up visits including the ENT and rad Oncologist over the past years with each year bringing different problems, be it swelling, choking, phlegm, lack of voice and the Old problem that started it all massive ongoing pain from my Tri Geminal Nerve. This nerve was initially affected by the Tumour and the tumour progressed along it until it reached my throat. At this stage it was finally diagnosed by a PET Scan. Unfortunately for me it required an extremely high dose of radio therapy which has left me with an enlarged but also necrotic larynx.
I have been informed by the ENT that the Larynx will need to come out as it could either turn cancerous or septic and become life threatening.
I am hoping some wise soul who has been through the experience can lead me to make a decision on removal.
Interested in more discussions like this? Go to the Ear, Nose & Throat (ENT) Support Group.
This is a sad turn of events for you. You are very helpful with others on the H&N group and yet your own battle continues. I don't like to see people whittled away bit by bit. It's not the way life should be. Hope someone chimes in soon. Here is thinking about you.
I had throat cancer twice, and I never smoked. I had a large tumor on the base of my tongue, plus tonsil cancer. I had 35 chemo and high radiation treatments for 3 months. The radiation damaged my epiglottis to where it does not function at all. Therefore, I cant eat or drink anything by mouth, because i have no protection of liquids or food going into my lungs. My ENT told me many times i need a larenjectomy. The radiation also severely narrowed my airway, and i had a trach put in my neck so i could breathe better. So, either I could remain on a feeding tube and trach, or get a larenjectomy. I did ALOT of research on larenjectomies and personally it scared me. Thier is alot of daily maitenenance involved plus you will not be able to speak. After about 4-6 months they give you a microphone that you press against your neck to get words out. They teach you how to do this. But your neck will get sore from pressing on it. I have tons of mucus cause of the hole ( stoma), that they cut in my neck for my trach. It blocks my vocal cords so most of the time cant speak. Then sometimes when I get lucky I can manage to speak alittle, I had a tough decision to make, but I decided Not to get a larenjectomy. But, for you your ENT said its life threatening if you dont get a lary. I would suggest getting a second opinion from another ENT, then make your decision. Unfortunately, we are at the mercy of our doctors. I wish you the best of luck, and hope I helped you.
Many thanks Suz22, it seems we are in a similar boat with many non-functioning parts in our Throats. There has been a lot going on since my post just two weeks ago. I have had a consult with my ENT, a scope and then a further meeting just to discuss my options. I am in the hard basket with any doctor as the cancer has had more than just throat problems for me. Some of which cannot be, now or in the foreseeable future fixed. Age is my biggest drawback, at 75 they are reluctant to enter into anything radical.
Of course, a Laryngectomy is radical, but not out of the question. Like you I have done heaps of research to try and get a better idea of what to expect, the impact on me in a general health sense and any lifestyle problems. This is now the third year in a row they have told me that my larynx needs to come out, that it is pre-cancerous. I have now had five biopsies, none of which said cancer, including the last one which followed only two weeks later by another much more intrusive one. The PET showed lots of heat in my larynx but no spread to any other area including lymph nodes. I now know just what is causing the problem, since my last discussion with the team. The muscle structures of the Larynx are very swollen, these control the Epiglottis and the vocal chords.
The swelling is stopping both from doing what they should and is also causing the excess amount of mucus and coughing. The coughing causes more swelling as it strains the already inflamed muscles. Just to add to the already hefty load, I still have this damage to my tri-Geminal nerve structure that feeds into the larynx. This cannot be repaired. Removing my Larynx won't get me out of pain. That is my most pressing life changing problem, that is outside of Choking and aspirating food or liquids and coughing my silly head off. A combination of excess mucus, localised swelling in parts my epiglottis should not have, also brings in another problem. Fungal infections! These are my worst enemy and it would seem many others after radical Radiotherapy. The nooks and crannies caused by the therapy are a breeding ground for Fungal spores. It all adds up to more heat, more swelling, more coughing, more mucus and then the cycle repeats.
The final upshot is the Larynx stays where it is, for the time being, I am now on a course of anti-fungal and constant monitoring with a visit every three months to the ENT and half yearly visits to the Rad oncology.
I did not believe the benefits of a total Laryngectomy outweighed the lifestyle and health consequences of removal. So for now, I am going to remain Whispering Jack, with my little, tiny voice and my swollen larynx.
Many thanks for your great post and insights from another basket case of fixing the Cancer, but not the patient.
Good luck to you in your ongoing battle.
Thank you Ntodd for your response. I can understand what you go through on a daily basis, especially when it comes to the pain. After my treatments in 2018, I have horrible pain in my throat every single day. I cant moisturize my throat tissues, and of course the wicked coughing spells make it worse.
On a better note, it seems like you have a good medical team monitoring your condition. I had the number 1 ENT at my hospital, but I had to drop him. He was very arrogant, and full of himself, with absolutely no bedside manners. He would make jokes about my neck being skinny. To his surprise some of the new residents would defend me. It's a teaching hospital. My new ENT, just changes my trach, but does not even check or scope me. Totally useless, I can change my trach myself, and save the $45 copay.
I'm 64 yrs old and was looking forward to my golden years. But cancer takes away your quality of living, affects your financial stability, among other things. I had a great job working for the county with a good salary. I got sick with cancer and lost my job, cause I could barely speak, and have to survive on tubes to breathe and eat.
I'm glad for now you dont have to endure a larenjectomy. That surgery in my opinion, is not more beneficial It just creates more issues to deal with, and being older, it's not easy at all.
Hope in the future, like me, you can manage what we have been dealt with.
Thanks for your reply suz22. Just one point that has made a remarkable difference to me. Anti-Fungal treatment. I restarted the treatment a few days back now and have had truly great success with the amount of mucus forming in my throat. This has dramatically reduced the amount of coughing to clear the airway and some of the pain association with swelling down as well. My doctor has given me two courses of 14 days each a small capsule to be taken 1 each day. Should it return I can restart the next course preferably after seeing he or the ENT team.
Small light at the tunnel at the least. By the way a scope doesn't or can't show fungal spores, they are too small. Only a Biopsy designed to look FOR THEM. But maybe your doctor could look at this option and see if it can make a difference. I don't think for you it would be very expensive as an option.
I am in Australia, yes down under. Cancer is a worldwide problem, and I came across this site while researching options. Luckily for us we have a fantastic medical system. It can be totally free, via our public hospitals. We have the option of private via Insurance, but it still has too many out-of-pocket expenses. I pay $6.60 for any script on our PBS and nothing for hospitals specialists or doctors. Cancer patients also get special attention if they are people like me, more remote. Travel expenses and accommodation are available if required. So the financial burden is removed and allows us to get on with healing.
Time will tell with me and the ongoing Larynx problem, but I will be doing everything in my power to try and regain some better health. It is also my wish that yourself and all the others can get to a point where all the problems with the various cancer sites can get some long-term help and relief. Please take care and look after yourself.
Thank you very much Ntodd. I don't know if I have fungal spores. I had quite a few doctors scope me, but I also had Pet and CT scans. The doctors never mentioned fungal spores after my test results came in. Can you quickly tell me what happens when they are left untreated, and what are the primary symptoms? I promise I will not bombard you with messages. Thx again! Oh and by the way I live in the United States, North East region.
Hi Suz22, The fungal thing is so overlooked and it's primary symptom is Mucus, way too much of it. The mucus is delivered in an effort to overcome the infection that the fungus may cause. So, you end up with a Double whammy. Both the original fungal infection and a possible movement into also a bacterial infection.
Worth treating it as if you have it, even if you don't know. You will notice a difference upwards in both fungal problem and general health if so. The one I am on is
(Brand) Dizole 50. fluconazole 50mg.
Small capsule easily swallowed. I imagine you need a script for it, but don't know in your case.
See if it helps, don't worry about questions that's what we are here for.
All the best
I have lots of mucus but it has decreased somewhat in the last 6 months or so. I can keep it under control the best I can. I also have a suction machine where I place the tube through my trach into my throat and it acts like a vacuum, sucking out the secretions.
I will mention to my doctor about the possibility having a fungal infection, and see what he tells me.
I really appreciate your help, and you are very fortunate to have excellent medical staff, and the technology to pinpoint fungal infections. They sound somewhat more advanced than here in the US. The health insurance coverage I have pays for all my liquid food and required medical supplies. I only have a copay for my specialists, so not too bad.