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Diagnosed with sarcoma? Let's share
Sarcoma | Last Active: 3 days ago | Replies (853)Comment receiving replies
Similar to JeffK, I was diagnosed with a laryngeal cancer: Cricoid Chondrosarcoma. I was diagnosed in Dec 2013 and immediately scheduled for a total laryngectomy. After doing a lot of research on this rare cancer, I found studies published by Dr Jan Kasperbauer at Mayo Rochester and sought a second opinion from him. I had two conservative "debulking" surgeries in Dec 2013 and July 2016 to reduce the tumor size and retain functionality of voice, breathing, eating and drinking. With tumor regrowth after the second debulking procedure, it was decided that more extensive surgery was needed to remove the tumor and structurally support my airway. I had that surgery April 4, 2017 and am progressing through recovery. I had a temporary tracheostomy for 2 months. My case is very similar to Jeff K's and I am very thankful to have had his advice and support through my surgery and recovery. Our surgeons chose different methods to address our situations, but both have been successful.
I am also happy to help or listen.
Deb
Replies to "Similar to JeffK, I was diagnosed with a laryngeal cancer: Cricoid Chondrosarcoma. I was diagnosed in..."
That is awesome news! I am so happy to hear of your fantastic medical results and your continued recovery!
I am due back mid-October for a CT scan and hope to hear the same. I am back walking and was encouraged to get back to my 3 miles at nearly the pace I was pre-surgery. I still have some breathing and voice issues, but hopeful those will continue to improve.
Stay in touch!
Deb
Hello Deb, I hope this finds you well. I am quickly approaching my 1 year anniversary of the major removal and reconstruction surgery which was performed on October 24th, 2016. I have been blessed in recovery and am doing very well. As this day approaches I thought of your journey and wanted to check in to make sure you are well and walking at pace! Have a great day! Jeff
Hi Jeff,
Thanks for checking in and congratulations on your upcoming anniversary and strong recovery! How goes your running? I am doing well. In two weeks I have my first scan since surgery 6 months ago and I'm hopeful that it is clear and all is well. My voice quality is not much changed, so I'm going to see a speech/lang therapist next month for an evaluation and see what options there might be to improve that. Take care and continued good health to you! Deb
Hello Deb,
How did the six month scan go and what did you learn from the speech therapist? My voice is variable, good days, OK days and not so good days. The good news is that we still have our voices whatever the volume level. I am always glad to hear that you are doing well and fighting the good fight. Have a great Thanksgiving Holiday as we both have much to be grateful for! Jeff
Hi Jeff! I was just thinking about you! My appointment went very well- scan looks good and my surgeon is extremely happy with results. As a small piece of my cricoid cartilage remains, I will still be monitored, but I don't go back for a year. He discussed doing some revision to tissue to open my airway a bit more and possibly an injection to damaged vocal cord to "pump it up" and potentially improve voice quality. Have you had any additional procedures? Today is my speech eval-I'll let you how that goes. I agree, much to be thankful for! Deb
Deb, Hopefully you have had joyous Holiday season as we both have much to celebrate. I wanted to wish you a Happy and Joyous New Year's filled with great health. I am also curious to see what you have been doing with speech therapy. My voice is continuing to get stronger and I am still running, all good! Have a great day, Jeff.
Hi Jeff! Sounds like you are doing great! I found the speech therapy sessions to be helpful; the goal being to smooth the roughness of my voice. Good training and tips on how to breathe more deeply and relax the neck muscles and not try to force the voice so much. Your running may be achieving the same things!
Keep in touch and continued good health to you!
Deb
Hello Deb, this past Saturday, February 17th was the one year anniversary of having my trach removed. Truly a celebratory day, however it was definitely overshadowed by our grandson's church/school fund raising pancake breakfast. I hope that your speech therapy sessions are having the desired outcome. Sounds like the walking should also help with your breathing. Wishing you continued success on the journey to redefining the new normal as they call it!
Deb, Hope this finds you well and look forward to learn how your recovery continues to progress. On April 12th Mayo published an article concerning my journey and I wanted to share it with you. The following link will take you to the sight; the article is titled “Retaining His Voice With Radical Treatment” https://sharing.mayoclinic.org
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Hello Deb, I had my six month visit with Dr. Moore a couple a weeks ago and I am happy to report I am cancer free and well on my way to recovery. I have been working out and now built up to a 4 mile run which has been challenging to do because of the paralyzed vocal cord which still blocks about half of my airway. The good news is that I really do feel very good. Please let me know how your recovery is progressing. All the best Jeff.