Hospice survivor

cz

I am new to this board but not new to the bad and unexpected things that seem to find thier way into our lives. Back in 2010 I was placed in hospice with Cirrhosis of the liver and with all doctors giving me no chance, and now it's 2016 and I safely say that doctors dont know everything. Now I am facing a new foe called cancer of the larynx (i.e) tumor on vocal cords, went though 29 radiation treatments and I am 3 months post and not getting much of what to expect from the docs, but I do get more info from reading your posts and I just thank God that your out there..

 

Barbaraek

You ARE a survivor CZ

so you must have great strength and fortitude. This journey is a tough one and you will find this group to be helpful, informative and supportive. There are several active members on here who have experienced laryngeal cancer. Everyone going through the treatments here are real heroes. If you have questions...post them by all means and you will hear back from those who understand what you are going through first hand. I'm wishing you well in your recovery and hope that the road ahead is smoother for you.

 

Barbara

cz

Barbaraek said:

You ARE a survivor CZ

so you must have great strength and fortitude. This journey is a tough one and you will find this group to be helpful, informative and supportive. There are several active members on here who have experienced laryngeal cancer. Everyone going through the treatments here are real heroes. If you have questions...post them by all means and you will hear back from those who understand what you are going through first hand. I'm wishing you well in your recovery and hope that the road ahead is smoother for you.

 

Barbara

I knew I would find the right

I knew I would find the right place, thank you Barbara and as for now this journey begins...

wmc

Welcome to H&N group

Welcome and also sorry you find yourself needing to be here. You seem to have made it through the treatment, and on the recovery. Not sure if I have the answers, as I never had radiation for mine. SCC T3;N0; M0 3cm x 2.5cm x 2.5cm supraglottic. Yes my tumor was on the left vocal cord and preventing it working. My epiglottis did not close right as well. They did a full Laryngectomy and a neck dissection on both sides and removed lymph glands. 48 on the left and 38 on the right. Then installed a TEP Prosthesis [oneway valve] so I could still talk. 

As what you can expect I can't really say. Having radiation they were trying to do two things. First, get rid of the tumor, and second keep your vocal cords with hope they will still work. I am sure not a doctor; but the radiation may affect your vocal cords and make them and the surounding tissue a little tough and hard on the vocal cords. There main concern was to rid the cancer. You might have a slite differance voice and often it can go lower and even less volume, to sounding hoarse. The good news it you still have them. Most likely your neck will be stiff so keep streaching it slowley Also keep swalling lots of water. Most likey they will have you come back to get checked every 2 - 3 months the first year and every 6 months the second year. I would say to not strain your voice, but use a lower volume and just talk even if it only to yourself. They can freeze up some times and one or both will stop moving.  What I did was record my voice and ues it to see my progerss. I would guess you will get back most of your voice and very close to normal.

Bill

cz

wmc said:

Welcome to H&N group

Welcome and also sorry you find yourself needing to be here. You seem to have made it through the treatment, and on the recovery. Not sure if I have the answers, as I never had radiation for mine. SCC T3;N0; M0 3cm x 2.5cm x 2.5cm supraglottic. Yes my tumor was on the left vocal cord and preventing it working. My epiglottis did not close right as well. They did a full Laryngectomy and a neck dissection on both sides and removed lymph glands. 48 on the left and 38 on the right. Then installed a TEP Prosthesis [oneway valve] so I could still talk. 

As what you can expect I can't really say. Having radiation they were trying to do two things. First, get rid of the tumor, and second keep your vocal cords with hope they will still work. I am sure not a doctor; but the radiation may affect your vocal cords and make them and the surounding tissue a little tough and hard on the vocal cords. There main concern was to rid the cancer. You might have a slite differance voice and often it can go lower and even less volume, to sounding hoarse. The good news it you still have them. Most likely your neck will be stiff so keep streaching it slowley Also keep swalling lots of water. Most likey they will have you come back to get checked every 2 - 3 months the first year and every 6 months the second year. I would say to not strain your voice, but use a lower volume and just talk even if it only to yourself. They can freeze up some times and one or both will stop moving.  What I did was record my voice and ues it to see my progerss. I would guess you will get back most of your voice and very close to normal.

Bill

That sounds like good advise

That sounds like good advise I thank you. My ent doc said I would only need rad treatments but others thought I should follow with chemo which was out of the question due to the liver disease and left me no choice except hope for best. Anyway the first month after radiation I was feeling good and was getting my voice back and went back to ent and he said it was looking great, oh man was I happy but not for long because my throat started to swell and lost my voice which seems to be down to a whisper, it comes and goes. So went back to radiation oncologist and he said it was normal to have these kind of problems and could go on for months, it was nice to get that bit of info but wish he would have said so sooner. I would appreciate any other advise anyone has to give.

tommyodavey

cz said:

That sounds like good advise

That sounds like good advise I thank you. My ent doc said I would only need rad treatments but others thought I should follow with chemo which was out of the question due to the liver disease and left me no choice except hope for best. Anyway the first month after radiation I was feeling good and was getting my voice back and went back to ent and he said it was looking great, oh man was I happy but not for long because my throat started to swell and lost my voice which seems to be down to a whisper, it comes and goes. So went back to radiation oncologist and he said it was normal to have these kind of problems and could go on for months, it was nice to get that bit of info but wish he would have said so sooner. I would appreciate any other advise anyone has to give.

Welcome Here

Hi CZ, and welcome to the forum of survivors.  It sounds like you've been through hell and back again.  Never in my life have I heard of someone leaving hospice alive.  You are one strong person to be able to get out of that mess with your liver failing, etc.  Then to get cancer on top of that makes one wonder just how much a person can take.

 

Congrats on not getting chemo.  The rads are bad enough and now you know that the after effects will linger on for who knows how long.  But overall it sounds like you're doing great!  To be able to say you walked out of hospice is awesome.  You are obviously not ready to lie down and let your health diminish.

 

Keep us posted on your progress.

 

Tom

 

 

joannaw81

hello

Welcome.

Similar story with my mom. She was diagnosed with liver cirrhosis in 2007, doc said only transplant can save her at that time. She has been stable with that since than without the transplant. Later she was diagnosed with tonsil cancer back in 2010. Had 3 recurrances between then and 2012. On march 1 this year it was her anniversary of being cancer free for 4 years!!! good luck to you. You can beat this.

swopoe

Welcome! You are an amazing 2

Welcome! You are an amazing 2 time survivor and you give all of us hope. Wish you did not have to be here, but glad to have you as part of our family.