Need trach removed...Help

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Lynn1955
Lynn1955 Member Posts: 4
in Head and Neck Cancer #1

Hello, 

I am new to the forum but have been reading everyone's posts and think this site is great. Makes me feel like i am not alone on this journey. so a little about myself, In December 2015 i was diagnosed with laryngeal cancer and had surgery that removed 95% of the lesion. I did not do radiation or chemo and now feel like i am stuck. I wanted to take an alternative treatment route but in sept 2016 i had an emergency trach put it due to the tumor blocking the airway and unfortunately i cant go to the clinic that i planned on going because of it. So my question is has anybody had any expereince with having part of the cancer removed so that i can get the trach reversed. Also am interested in finding a doctor who will be supportive of my decision and work with me. Felling very scared and could really use some support or other options. Thank you for any suggestions or advice. 

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  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #2
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    Laryngeal Cancer

    Laryngeal cancer is a hard one.  My husband had it but did chemo and radiation first.  The tumor was large.  After a PET/CT scan we were told everything was good, but it wasn't.  He ended up having to have this larynx removed and a permanent stoma was done for him to be able to breathe and of course he lost his voice.  On another site, webwhispers which is a site that deals with laryngeal cancer, I read of several that had part of their larynx removed but I don't know if they were able to breathe without a stoma.    Not too many on this site have laryngeal cancer. 

  • Lynn1955
    Lynn1955 Member Posts: 4
    #3
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    Ladylacy said:

    Laryngeal Cancer

    Laryngeal cancer is a hard one.  My husband had it but did chemo and radiation first.  The tumor was large.  After a PET/CT scan we were told everything was good, but it wasn't.  He ended up having to have this larynx removed and a permanent stoma was done for him to be able to breathe and of course he lost his voice.  On another site, webwhispers which is a site that deals with laryngeal cancer, I read of several that had part of their larynx removed but I don't know if they were able to breathe without a stoma.    Not too many on this site have laryngeal cancer. 

    Thank you! I will check out

    Thank you! I will check out that site. How is your husband doing? so sorry you are going throught this. I was recently told that I would have to have surgery to remove voicebox, cartiledge, and lymph nodes followed by 6 weeks of radiation and chemo :(

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    edited April 2017 #4
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    Husband

    Husband fought the battle for 5 years and passed away but it wasn't due to the laryngeal cancer.  He had a second primary that was found a year after his larynx was removed -- at the cervicall of his esophagus and then spread to his lungs.   He finally said after the second primary came back after more chemo and radiation that he had had enough and declined all further treatment.  He did well for almost 3 years afterwards but the only thing offered was chemo and we were told up front it would only prolong and possibly hasten his time. 

    Be sure you have a good head and neck specialist.  We didn't at first just our local ENT who had stopped doing this type of surgery and he referred us to Emory Winship Cancer Center and a great head and neck specialist who has since left Emory and gone to Florida, I think.  But he is an excellent and a very caring doctor, something that is hard to find these days.  Something I can't say about the oncologist. 

    Wishing you peace and comfort.

  • lornal
    lornal Member Posts: 428
    edited April 2017 #5
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    Trach

    I had hypopharnx cancer. The cancer wasn't on they larynx - in fact, I had been scoped, and probed, and scaned (but not PET scan), and dialated so many times - but there was nothing to see or biopsy.  Until one time in December of 2013. I had already lost my voice.  And was told that basically, I could breath or I could talk - and breathing was a much better option.  I woke up on Jan 2 of 2014 - and I could talk - not good.  Ended up in the ER - given steriods - and then had a trach early the next week.  Worst 10 days of my life.  By then, I knew a laryngectomy was inevitible.  Assured by all that the laryngectomy stoma is much easier than the trach to deal with - and much more stable.  3 years out - life is good, breathing well - talking w/ alternate voices.

    As Ladylacy said - take a look at Web Whispers (webwhispers.org).   Free to join - it has a forum, email daily digest, and a very active facebook group.  There are folks on their with trachs, partial laryngectomies, and total laryngectomies.  There are care givers and speep-language pathologists.  A wealth of knowledge.

    Lorna 2007 & 2014

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