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deborahe
@deborahe

Posts: 26
Joined: Feb 25, 2017

Cricoid Chondrosarcoma

Posted by @deborahe, Feb 25, 2017

I am currently being treated for this rare cancer at Mayo Rochester. Anyone else with this condition?

REPLY

Welcome to Connect, @deborahe.
At the moment I wasn’t able to find a current member who is talking about Cricoid Chondrosarcoma. But I would like to connect you with other members. Please meet @allisonsnow who is also being treated with a rare cancer at Mayo MN. As well, you may be interested in joining these conversations about head and neck cancers where you’ll meet members @mrsjhagen18 @lzzie @loli @alpaca and others

– Head and Neck Cancer http://mayocl.in/2eskY6G

In the meantime, Deborah, why don’t you tell us a bit more about yourself. When were you diagnosed? What treatments are you getting? We look forward to getting to know you better.

Hi Colleen,
I presented with wheezing and a raspy voice in 2013. A laryngeal mass was discovered and pathology determined a Grade 1 cricoid chondrosarcoma. The first surgeon I saw recommended total laryngectomy and I sought a second opinion. Through research I found a surgeon at Mayo that had published works on more conservative approaches to this cancer that preserve functional voice and breathing. This cancer is slow growing, rarely metastatic, and not treated with radiation or chemo. I’ve had two outpatient endoscopic procedures with Dr Kasperbauer at Mayo Rochester to reduce tumor but due to recurrence am now discussing open surgery and reconstruction involving larynx and trachea.

Deborah, I had Laryngeal chondrosarcoma and presented with a hoarse voice and difficulty breathing. I saw 8 world class surgeons throughout the US and fortunately I met Dr. Eric Moore at Mayo. He was the only surgeon who had an approach that had a high probability of a successful outcome preserving all functionality. He removed my tumor in its entirety, opened my airway and preserved the one remaining vocal cord and kept in tact the paralyzed vocal cord so that I could breathe, eat and speak. I had a temporary trach that I was able to remove post op after a couple of months. I urge you to visit with Dr. Eric Moore at Mayo, he was the answer to my prayers. Jeff

@jeffk

Deborah, I had Laryngeal chondrosarcoma and presented with a hoarse voice and difficulty breathing. I saw 8 world class surgeons throughout the US and fortunately I met Dr. Eric Moore at Mayo. He was the only surgeon who had an approach that had a high probability of a successful outcome preserving all functionality. He removed my tumor in its entirety, opened my airway and preserved the one remaining vocal cord and kept in tact the paralyzed vocal cord so that I could breathe, eat and speak. I had a temporary trach that I was able to remove post op after a couple of months. I urge you to visit with Dr. Eric Moore at Mayo, he was the answer to my prayers. Jeff

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Jeff, Thank you so much for your detailed reply. It’s very encouraging to hear of your successful surgery, especially as there are so few people with this cancer. I had surgery two weeks ago with Dr. Jan Kasperbauer at Rochester. I left the hospital with a temporary trach as well. Did you have any additional surgeries to reduce granulation and swelling? Deb

I had both granulation polyps and swelling that were handled mostly with meds and an inhaler. The swelling and granulation is very common post op. I also had to have surgery to place a stent to help open it more and it worked very well. The worse part was the trach. I wish you the best and hope your trach comes out soon. Jeff

I forgot to ask if they took cartilage from your ear and implanted it into your forearm for the reconstruction process?

The trach is no fun, that’s for sure. My surgery involved rotating the trachea 90 degrees and using tracheal cartilage to support the airway rather than using cartilage from another area, though that procedure was discussed at one point. When did you have your surgery?

My major surgery was on October 24th. The last surgery to remove my stent was Enid February. I have had my trach out since the end of February. When yo are up to it cap it ad much ad you can. That will help you return to normal. Jeff

Thanks, Jeff. Were you able to manage the trach care on your own? So far, I have needed help with the saline and suctioning on a regular basis. Any tips?

Deb, I had a lot of mucus and I was able to lavage with saline viles. Frequently I had to do it more than once and did it many times a day. I also cleaned and changed the inner cannula very frequently. The suction process did not work for me and I had a strong cough that really helped. Jeff

Hello, just wanted to check in to see how you are doing with the trach? Jeff

Liked by Jamie Olson

@jeffk

Hello, just wanted to check in to see how you are doing with the trach? Jeff

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Hi Jeff, Thanks for checking in. I am managing it better and followed your ideas- I quit using the suction and started cleaning inner cannula more frequently, and think that’s helped quite a bit. Looking forward to getting rid of it, though!

Liked by Jamie Olson

Did they also discuss changing the whole trach once a week and fully cleaning it and rotating them? My wife whose name also happens to be Deb would pull out trach and insert a clean one that she would have all set up with the collar. Because I had a strong cough mucus woul also escape around the trach and I changed split gauze very frequently as well.

Also meant to ask if your tumor damaged one of your vocal cords? I have one that it totally paralyzed. When was your procedure?

You have to remind yourself at least three times a day that this is only temporary! Focus solely on getting it out. Jeff

Hi Jeff, I’ve been back for checks weekly, so they change out the trach at my visits. It seems I’ve had a very similar experience to you.
Yes, one vocal cord is paralyzed, so my voice has been compromised for some time. But some voice is better than no voice at all.
My surgery was on April 4. I’ve also had a big neck brace that holds my head in a flexed position with chin down since my trachea was rotated to limit stress on the surgical area, but that comes off in a few days.
Do you need any additional procedures at this point? You must be about 6 months post surgery. Do you feel you’ve recovered completely yet?
Thank you for your continued messages and support! I really appreciate it!

@deborahe

Hi Jeff, I’ve been back for checks weekly, so they change out the trach at my visits. It seems I’ve had a very similar experience to you.
Yes, one vocal cord is paralyzed, so my voice has been compromised for some time. But some voice is better than no voice at all.
My surgery was on April 4. I’ve also had a big neck brace that holds my head in a flexed position with chin down since my trachea was rotated to limit stress on the surgical area, but that comes off in a few days.
Do you need any additional procedures at this point? You must be about 6 months post surgery. Do you feel you’ve recovered completely yet?
Thank you for your continued messages and support! I really appreciate it!

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Yes six months past my major surgery.  Had a few setbacks along the way and had the trach in for 4 months.The good news is that I am back at work, breathing, eating and talking.As the doctor says my new normal.  I asked him to make sure that my c voice ended up between Luther and Barry.  He did good I can talk.  Have a great day.  

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