Laryngeal cancer (recurrence)

Posted by msherfinski @msherfinski, Apr 17, 2020

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??

@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?

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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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Thank you Deborahe for your input. It kind of made up my mind . Will work on getting into Mayo on Monday. God Bless you!!

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@msherfinski

Thank you Deborahe for your input. It kind of made up my mind . Will work on getting into Mayo on Monday. God Bless you!!

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All the best to you. We’re in your corner!

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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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Thank you Colleen Young. Mine was discovered late and was very complicated. It was June 2019.. I don't think it would be helpful to share in this group. Thank you

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Hi, this is msherfinski. I've received a couple of doctors names from you wonderful people. I have Dr.Eric Moore(507-516-4392). From Jeff. I also have a Dr. Jan Kasperbauer. From Deborahe. My cancer is 21/2 years post radiation. My ENT said it was extensive occurrence, now on both sides and I am a likely candidate for complete laryngectomy. I need to find the best in this field, so I can call them for availability and then try to get a referral. Any other names and phone numbers?? I sure could use your help,. Thanks again !!

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@msherfinski

Hi, this is msherfinski. I've received a couple of doctors names from you wonderful people. I have Dr.Eric Moore(507-516-4392). From Jeff. I also have a Dr. Jan Kasperbauer. From Deborahe. My cancer is 21/2 years post radiation. My ENT said it was extensive occurrence, now on both sides and I am a likely candidate for complete laryngectomy. I need to find the best in this field, so I can call them for availability and then try to get a referral. Any other names and phone numbers?? I sure could use your help,. Thanks again !!

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Hi Paulette here. I missed where you live but I think you are closer to Rochester. I believe you will find the best answers and care there. I live and was treated in Florida. Wishing you well on this journey.

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@phinken

Hi Paulette here. I missed where you live but I think you are closer to Rochester. I believe you will find the best answers and care there. I live and was treated in Florida. Wishing you well on this journey.

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Thanks phinken. I live about 5 hours from Rochester.

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@msherfinski

Thanks phinken. I live about 5 hours from Rochester.

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Hi @msherfinski, Just checking in. How are you doing today?

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@colleenyoung

Hi @msherfinski, Just checking in. How are you doing today?

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Thank you Coleen! I'm still pretty depressed, but I am making some progress with treatment. I have a consultation set up for Friday at Froedhert in Milwaukee. I also have been in contact with Mayo as to a second opinion if needed . They are in the process of getting my records sent to them. My Oncologist called me today and told me the ENT that scoped me is not a Cancer specialist. I think she was trying to give some ray of hope. She wants some further testing before my consultation, so who knows. I am trying to keep upbeat, but it so damn hard. My wife try's to cheer me up,(God Bless her) , but I just can't stop thinking about a life win a file in my throat, especially since one of my passions is swimming. In short, I'm very much bummed. Thanks for your concern!! msherfinski

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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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Hello everyone. My surgery for biopsy is going to be next week. Said they would need to put a Trach in because the tumors are blocking my airways. He told me he thought they were cancerous. Don't really know what to do now. Said it would require a 4-5 day hospital stay. Can anyone help me, I'm scared as hell. If they are cancerous he said laryngectomy would be in order.

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