Laryngeal cancer (recurrence)

@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.

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.

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

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.

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

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 .

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.

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.

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!

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. 🙏🙏🙏