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I was just told my laryngeal cancer returned. Next step complete laryngectomy. I'm scared! I don't want to lose my voice box. What can I do??
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Can you or your wife call and talk with one of the doctors at mayo before your biopsy? You may not get different answers from a second opinion, but isn't it worth pursuing? Personally, I always feel that I cope better when I have gathered as much information as possible to make the best decisions. All the best to you.
Thanks for replying Deborahe. I will try to call Mayo Monday, but I don't think they would let me talk to a doctor. Froedhert going to be calling me to set up the biopsy. The Doctor there painted a pretty grim picture. He did point out it was my decision though. They're concerned is the tumor blocking my airway. He said he thought it was cancerous. I am emotionally drained. I just don't know how to go about this. I've been praying, that's for sure!!
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Deb and I both had temporary trachs, key word being temporary. I am going to be brutally honest and I get you are scared as hell which should motivate you to get to Mayo! I live in Delafield as I shared with you, and when I was first diagnosed I went to Froedtert and saw Dr. Joel Blumin who told me most likely I would need a total Laryngectomy as well. Then I went to Dr. Bruce Campbell at Froedtert and heard more of the same. I then went to UW Madison where they thought they maybe able to save some of my functionality. Proceeded to go to Cleveland Clinic and saw the top two ENT surgeons there and they wanted to chisel away at the tumor to open my airway which was already only at a 10% opening. Ultimately in time they said I would need a Laryngectomy in time. From there we went to Mayo where I saw Dr. Moore who had a cutting edge procedure that he had performed once before. He felt he could remove 100% of the tumor and reconstruct my airway with my ear cartilage and keep all of my functionality; eating, breathing speaking. I had a temporary trach to breath during procedures and healing. After my first visit to Mayo I had already set up visits to Stanford and he had a way to get most of the tumor and keep my functionality. I also went to Mt. Sanai where there was also another radical procedure proposed, however reconstruction was a possibility. My point is that I was not going to accept that a Laryngectomy was the only option. If I would have listened to the first diagnosis I would have a permanent trach, feeding tube and mechanical device to speak. Your situation may be different but if I were you I would get in my car today and drive to Mayo and knock on Dr. Moore's office door! We made one phone call to get into Mayo and 3 days later I was in his office. If your airway is blocked so much that you can't breath you may very well need a temporary trach, however there are different ways for that procedure to occur as well and to protect my procedure it had to placed in a very special place. We live on a lake and as you already said you kike to swim and I am know teaching my grandkids to ski, swim, and fish. My surgery was in October and the attached photo I sent to Dr. Moore with a big thank you. You may not get the same result but if you do not get second opinions you will always be second guessing yourself. Turn your fear into action! GO GET A SECOND OPION. If I did not get a second opinion I would have had a Laryngectomy, but now I am still functional and thankful for everyday! Turn that fear into motivation and get going!
Thank you Jeff!! That's a very inspirational story and I am so glad of your success. I guess my only question for you is. were your tumors cancerous?? I'm thinking that maybe I should let them go ahead with the biopsy. I just don't know what I should do. The surgeon thought they looked like cancer.
Jeff, do you think I should go ahead with the biopsy??
I had Laryngeal Chondrosarcoma a very rare form of slow growing bone and cartilage cancer that grew inward and paralyzed one of my vocal chords and took out half of my voice box and closed 90% of my airway. All of that was reconstructed with the help of ear cartilage the was implanted in my forearm to grow and ultimately used to replace the cricoid cartilage in my esophagus. There were less than 200 cases like this ever reported, so I like you thought I had no hope. I attached photos of my procedure to show you the "art of the possible", not to scare you more. You can see how large of a tumor was removed from my throat. I really want to motivate you to go to Mayo. None of us can make any decisions for you. You have to take control!
Thank you so much Jeff for taking the time to address my concerns. I would like to get into Mayo and see Dr. Moore if possible. I just don't know if I should have the biopsy done first.
My ENT diagnosed me and I got an MRI which clearly showed a very large tumor. No doctor felt I needed a biopsy until the removal at the time of surgery. My airway was blocked 90% and I had no choice but to have it removed whether or not it was cancerous. The challenge was how to remove it and salvage functionality. Given the amount of blockage you have to your airway you most likely will have to have it removed. You have to come to grips with the fact it has to be removed under any circumstances. If you call Dr. Moore and share the dire nature of your diagnosis and that you must do something in days they will work with you! I will call Dr. Moore personally if you want me too.
Jeff, you may be the Godsend I really need right now. I would say my tumors are blocking about 75%of my airway. Right now I can breathe pretty good. If you could, give me your number and I can text over my personal information. God bless you Jeff for the help. A phone call from you might help.
@msherfinski, I just read in another discussion that you are currently in the hospital and you just had the tracheostomy. How are you doing?
In which discussion was the post? Thanks, Jeff
Mark was helping Lioness in this discussion, @jeffk
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