Laryngeal cancer (recurrence)

Posted by msherfinski @msherfinski, Apr 17 10:13am

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??

@msherfinski, it is such a blow to hear that cancer has returned. And hearing that the next step is a complete laryngectomy is scary. Fortunately we have several members who have walked this path too and are ready to virtually accompany you and answers your questions. @arismac @deborahe @jeffk have had laryngeal cancer. You can read more about Jeff's story here:
– Retaining His Voice With Radical Treatment https://sharing.mayoclinic.org/2018/04/12/retaining-his-voice-with-radical-treatment/

@loli @lynalexa @alpaca @karly are no strangers to cancer recurrences.

Msherfinski, when is the surgery scheduled to happen? What are your biggest concerns? Ask as many questions as you want.

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@colleenyoung

@msherfinski, it is such a blow to hear that cancer has returned. And hearing that the next step is a complete laryngectomy is scary. Fortunately we have several members who have walked this path too and are ready to virtually accompany you and answers your questions. @arismac @deborahe @jeffk have had laryngeal cancer. You can read more about Jeff's story here:
– Retaining His Voice With Radical Treatment https://sharing.mayoclinic.org/2018/04/12/retaining-his-voice-with-radical-treatment/

@loli @lynalexa @alpaca @karly are no strangers to cancer recurrences.

Msherfinski, when is the surgery scheduled to happen? What are your biggest concerns? Ask as many questions as you want.

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I haven't seen a surgeon yet, just going by what the ENT told me. "Extensive Occurrence of tumor. Both sides. Likely candidate for complete laryngectomy." I don't know if I'm putting the cart in front of the horse, but the way she told me, I'm scared!! Supposed to go to Froedhert in Milwaukee sometime next week. Its It's been about 3 years since my diagnosis and I thought I was cured!! I don't have any other symptoms besides a weak voice. I feel pretty good otherwise, so it's kind of baffling. Don't know if I should just let them do what they're going to do or seek out other options?? I had a appetite until they told me this(yesterday). Any input would help. Thanks. MS.

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I'm so sorry to hear about the recurrence. And it certainly is scary. I just watched a video of Dr David Lott from Mayo in AZ discussing laryngeal transplants and regenerative methods. He is definitely at the forefront of treatments. If you are able to, try to research and get a second and maybe a third opinion so that you feel you have the best information going forward. You are in my thoughts! -Deb

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@msherfinski

I haven't seen a surgeon yet, just going by what the ENT told me. "Extensive Occurrence of tumor. Both sides. Likely candidate for complete laryngectomy." I don't know if I'm putting the cart in front of the horse, but the way she told me, I'm scared!! Supposed to go to Froedhert in Milwaukee sometime next week. Its It's been about 3 years since my diagnosis and I thought I was cured!! I don't have any other symptoms besides a weak voice. I feel pretty good otherwise, so it's kind of baffling. Don't know if I should just let them do what they're going to do or seek out other options?? I had a appetite until they told me this(yesterday). Any input would help. Thanks. MS.

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I was also told I would need a total laryngectomy. Get the best information that you can and don't feel that you have to just go with what one Dr recommends.

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@msherfinski

I haven't seen a surgeon yet, just going by what the ENT told me. "Extensive Occurrence of tumor. Both sides. Likely candidate for complete laryngectomy." I don't know if I'm putting the cart in front of the horse, but the way she told me, I'm scared!! Supposed to go to Froedhert in Milwaukee sometime next week. Its It's been about 3 years since my diagnosis and I thought I was cured!! I don't have any other symptoms besides a weak voice. I feel pretty good otherwise, so it's kind of baffling. Don't know if I should just let them do what they're going to do or seek out other options?? I had a appetite until they told me this(yesterday). Any input would help. Thanks. MS.

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Don't panic . Thank goodness something was seen. There are to many variables to know for sure what is going on. Your ENT may have told you worse case. IF it is cancer and your only one symptom it could be early.
I was followed 17 years and last 3 of those had lesions on my eppiglottis and folds by the same group that treated my cancer. I was treated for wrong diagnosis over 2 years before correct diagnosis. Had a total Laryngectomy June 17 2019 stage 4.
Wishing you well. Paulette

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@deborahe

I was also told I would need a total laryngectomy. Get the best information that you can and don't feel that you have to just go with what one Dr recommends.

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What was you're outcome?? I don't know if I should let them do what they feel needs to be done or try to get in at Mayo in Minnesota .

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@msherfinski

What was you're outcome?? I don't know if I should let them do what they feel needs to be done or try to get in at Mayo in Minnesota .

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I was diagnosed with cricoid chondrosarcoma in 2013, so my situation may not be the same as yours. Cricoid chondrosarcoma is slow growing and has a low metastatic rate. I got my second opinion on treatment from Dr Jan Kasperbauer at Mayo Rochester, and I still see him. I had two tumor debulking surgeries (outpatient) to reduce the size of tumor and allow more space in my airway. When he felt a third debulking wasn't the best option anymore I had a more complicated surgery in 2017 to remove tumor, but retained my airway, swallowing and voice.

Liked by loli

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I am so sorry you have to deal with this again. Deborahe is giving you the beat advise, and the only thing I can add, is that we are here to support you through your journey. We will walk through it with you, as we might be of assistance at some point.

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Colleen shared my story with you. What it may not clearly detail is that I went to the top doctors across the country and only one was confident that he could save my functionality. My learning is that you have to have more that one opinion and I highly recommend Dr. Eric Moore at Mayo. You may have a very different situation however your voice, breathing and eating functionality demands you seek alternative perspectives. I will send prayers and thoughts your way and you MUST get additional opinions! God Speed!

Liked by deborahe, lynndian

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@jeffk

Colleen shared my story with you. What it may not clearly detail is that I went to the top doctors across the country and only one was confident that he could save my functionality. My learning is that you have to have more that one opinion and I highly recommend Dr. Eric Moore at Mayo. You may have a very different situation however your voice, breathing and eating functionality demands you seek alternative perspectives. I will send prayers and thoughts your way and you MUST get additional opinions! God Speed!

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Thank you to all responders. God bless each and everyone of you!! I am just so frightened right now. Have to get my head straight and figure this out. I'm from the Milwaukee area. Is it very hard getting an appointment at Mayo?? Any input would be helpful. 🙏🙏🙏

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I live in Delafield and it is a 4 plus hour drive to Mayo. I am confident that with your diagnosis you will be able to quickly get into Mayo. I implore you to go there! They have the best doctors, research and treatment that you could ever desire. The Rochester location is the number 1 hospital and ENT in the country. You need to turn your concern and apprehension into proactive action. You need to control your own destiny and be your own advocate! Dr. Eric Moore's number to secure an appointment 507.284.3542. God Speed…

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Boy o boy, what an amazing number of responses in quick order. You see @msherfinski, you're definitely not alone. Perhaps you're putting the cart before the horse. I say you're doing your homework and as @jeffk says being your own advocate. Good for you.

Should you wish to consider Mayo Clinic for a second opinion (and many are encouraging you to do so), here is the contact information http://mayocl.in/1mtmR63

Here's an article about the benefit of second opinions. Most physicians and specialists recognize their value.
– Mayo Clinic researchers demonstrate value of second opinions https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-researchers-demonstrate-value-of-second-opinions/

Keep asking questions. As @loli and @deborah said, we're here to accompany you.

Liked by deborahe

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@phinken

Don't panic . Thank goodness something was seen. There are to many variables to know for sure what is going on. Your ENT may have told you worse case. IF it is cancer and your only one symptom it could be early.
I was followed 17 years and last 3 of those had lesions on my eppiglottis and folds by the same group that treated my cancer. I was treated for wrong diagnosis over 2 years before correct diagnosis. Had a total Laryngectomy June 17 2019 stage 4.
Wishing you well. Paulette

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Hi @phinken Paulette, I'm grateful that your first post on Mayo Clinic Connect was to offer support to a fellow traveler. You're so right that it is good that @msherfinski's team found the anomaly and now something can be done. It's so easy to panic when you only have the report and not yet a consult with the specialists.

Paulette, can you share a bit more about your laryngectomy? How did you prepare? What is/was the recovery and rehab like?

Liked by deborahe

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@colleenyoung

Hi @phinken Paulette, I'm grateful that your first post on Mayo Clinic Connect was to offer support to a fellow traveler. You're so right that it is good that @msherfinski's team found the anomaly and now something can be done. It's so easy to panic when you only have the report and not yet a consult with the specialists.

Paulette, can you share a bit more about your laryngectomy? How did you prepare? What is/was the recovery and rehab like?

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Hi, Msherfinski here.. Just talked to another ENT and was told the doctors at Froedert would probably scope me on my 1st visit, which has already been done by a good doctor yesterday and then do a biopsy. The problem is that if the tumors are cancerous, they would want to remove the voice box right then, otherwise I risk swelling and would need a trach to breathe. This is being thrown at me all at once and I just don't know what to do. Please help!!!

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Make a phone call to Mayo first thing on Monday. Give yourself the weekend to try and process all that’s been thrown at you. Discuss with family and friends so that you have as much support as possible as you navigate this.

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