I am currently being treated for this rare cancer at Mayo Rochester. Anyone else with this condition?
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Hi Jeff, Great to hear that you are running again-that is truly inspirational! I'm a walker, and getting back at it, which feels great. Progress has been slower than I'd like, and definitely a challenge to impatient nature! I just saw my surgeon on Wednesday and will see him again in 3 months for a scan. You had mentioned that you had an appt coming up in mid-July; have you been back for that yet? Have a great summer!
Hi Deb, I just wanted to tell you how much I appreciated this discussion. I'm hoping things are going very well for you and also for Jeff. This condition is so rare that I'm having a hard time finding relevant information to help me stay positive. (My surgery and diagnosis took place in mid-January 2020.) So, thank you very much for this! Julie
Hi Julie, You are post surgery and that's fantastic! I'm glad you found @jeffk and me; I know how hard it is to find someone with this specific condition. jeffk was a lifeline for me when I had a lot of questions. How are you doing now? Where and with whom and what surgery did you have? -Deb
Julie, we are members of a very small and special family of thriver's. Please let Deb and I know how you re doing and all of your concerns and questions. We would very much want to share our learning's and experiences. The good news is that we made it through the unending overwhelming question of will we really ever get the trach out? We both did and Deb did it in record time. Let us know how we can help. God Speed! Wish you a speedy recovery. Jeff
Hi Deb and @jeffk , my surgery was a tracheal resection for cricoid chondrosarcoma, Stage 1 and 2, at University Hospitals in Cleveland. It all happened so fast that I didn't do any research about best hospitals, so I was very fortunate to have an amazing surgeon (Dr. N. Scott Howard) and surgical team. Eight day hospital stay; trach removed two weeks after surgery. I can manage a soft whisper in a quiet room. Working with a speech pathologist to get off the dysphagia diet. My next surgery is in mid-March to reposition my vocal chord and hopefully get my voice back. Hoping for a nice alto singing voice. Thank you again and enjoy your day!
Good luck with your next surgery and take good care of yourself. Let us know how it goes!
When my surgeon Dr. Eric Moore shared that my voice would never be the same, I asked him if he could make it a blend between Barry White and Luther Vandross. The good news is that I still have a voice and unfortunately could not carry a tune in a paper bag. God luck with your next surgery and keep us informed.
Jeff, I could maybe do a little Bob Dylan 😉 I was recently back at Mayo for my annual CT scan, and all is good! As a result, my next scan will be in 2 years instead of 1. I also had a consult with Dr Bayan who specializes in voice disorders to see if anything could be done to improve the quality of my voice; she did not feel there were any great options that would be worth the risk of compromising my airway. It was worth checking out, though. Hope all is well with you! -Deb
Deb, I'm so glad all was good on your CT scan! Thank you for sharing that. @jeffk , sorry you didn't get the best of Barry and Luther. Were you able to sing before? I've been singing tenor in the choir with my husband for the last several years. I really miss singing along to the car radio too. But the airway is more important. It is rather unsettling to think that my voice will be different. I will let you know what happens!
Deb, I am so happy for you that your CT scan was all good and you are 2 years out from the next. My voice consult yielded the same answer. I was actually more interested in the breathing aspect given I was a marathon runner. The consensus was that the paralyzed vocal cord was in a great position to allow the functional one to open and close which provided total functionality. The risk in trying to open the airway could easily compromise swallowing, breathing and talking. I chose to keep it blocking 50% of my airway and learning to deal with it. Good news is that I am still running shorter distances, but all good! I never could sing anyway, my priest actually asked me to not sing in church way before I was diagnosed.
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