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Laryngeal cancer (recurrence)

Head & Neck Cancer | Last Active: Sep 3, 2023 | Replies (61)

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@jeffk

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!

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Replies to "Deb and I both had temporary trachs, key word being temporary. I am going to be..."

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.