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Now looking at total laryngectomy

Puggle's picture
Puggle
Posts: 87
Joined: Aug 2011

I haven't been on here much lately so I'll give a brief history.  I am the caregiver for my husband, now age 52. 

July 2011 - He was first diagnosed with stage II throat cancer of the epiglottis.  Went through the normal 6 weeks of radiation and 3 rounds of cisplatin.   Follow up PET scans showed cancer free.

Dec 2011 -  A spot on his lung that the doctors were watching started to increase in size. 

Feb 2012 - Lobectomy, removal of his middle and lower right lung.  Kidney function shut down due to prior chemo treatments.  He was in the hospital for about 3 weeks.

April 2012 -  6 weeks of radiation to chest.  We declined chemo at this time because he was still so weak from the surgery.

Dec 2012 -  A few small spots (too small to biopsy) appeared at the surgery site. 

Jan to May 2013 -  Additional chemo (carbo, avastin and alimpta)  every 3 weeks.  Made it through 5 rounds and his blood counts were so low they couldn't give him any more.  Received one treatment of avastin alone as "maintence chemo".  Shortly after starting the chemo is January of 2013 he started experiencing throat pain.  His doctors just prescribed pain meds.  Nothing extreme was found by the ENT during an office scope. It seemed to be radiation recall because the outside of his neck was also getting red.

July 2013 - After severe neck pain, his ENT did a biopsy and saw that he had a lot of dead tissue and also an abscess in his throat.  The abscess was causing a lot of food to stick in his throat.  He was put on a liquid diet and sent for swallow classes.  The ENT did suggest a trach may be necessary.

Sept 2013 -  Almost overnight he was extremely fatigued, actually hardly able to walk.  Bringing up tons of mucus.  Went to the ER and found that the abscess that was in his throat actually broke through this larynx into the front of his throat.  He was also aspirating the liquid diet.  In the hospital for 20 days with MRSA blood infection (from the abscess) and aspiration pneumonia.

Nov 2013 - At home recovering, G-tube placed in hospital.  Nothing by mouth and getting stronger.  Per ENT, throat and epiglottis are extremely swollen.  Scheduled for biopsy and trach on Nov 27th. His heart rate has been extremely high and bp very low.  On Saturday, Nov. 16th starts coughing up blood.  Lots of blood and huge clots.  Back into the hospital via ambulance.  ENT doctor performs the biopsy and trach on Sunday.  Tells me that it looks like his pharnyx has degraded and is now affecting the cartoid artery.  Choices are complete laryngectomy right now (and the doctor said it was risky with his current state) or try to put in a stent to buy us a bit of time to think this through.  Opted for the stent and found that it wasn't the carotid but a lesser artery that they could glue.  He is doing well now.  Heart rate way now, bp normal.  Breathing very easily with the trach.

So...  this is still only a temporary measure.  We must do something soon or run the risk of another bleed that may not stop.  He is open to getting a laryngectomy because he is tired of the pain and also not being able to eat so it looks like we will be going down that path very soon.  Very concerned just because of the extent of damage in his throat.  In the words of his ENT  "It's a mess down there" and "Extremely worse that when the last biopsy was done in July".

 I just wanted to see if anyone of the site has had a laryngectomy AFTER going through the chemo and rads.  Has anyone else had radiation recall or massive throat issues after radiation? 

Also, any feedback from all laryngectomies.  Any issues eating after?  What about the voice prothesis?  Totally scared to go down this path but it looks like we have no choice. 

Thanks....  JC

 

longtermsurvivor's picture
longtermsurvivor
Posts: 1755
Joined: Mar 2010

What he is experiencing is radiation induced soft tissue necrosis.  Many at this site are more familiar with osteoradionecrosis, which is the same process, only affecting bone, primarily of the lowerr jaw.  But the effect is the same.  Enough damage to the vessels in the area, and they cannot carry enough oxygen to keep the tissues alive.  The result is what you two are going through right now.    The only positive about this is that the process is self-limited.  Tissues die off until they reach the edges of the area that has been devitilized, and if the medical team can just support him enough, life will eventually go forward again.  In this light, what is being recommended makes perfect sense.  Whatever is required, which can include laryngectomy, permanent feeding tube, repair of major vessels, all of this is designed to bridge the gap between the mess you find yourselves in right now, and a future that doesn't have him stuck  in the ER and ICU all the time.  It is important to just take it a day at a time right now.  Better times are ahead, just hard to see at the moment.

 

best to you both

 

Pat

debbiejeanne's picture
debbiejeanne
Posts: 2224
Joined: Jan 2010

jc, i was dx w/larynx cancer in aug 2009.  sept and oct 2009 went thru 35 rad tx.  was cancer free until feb 2012.  tx:  total laryngectomy with neck disections.  i can't tell much about the surgery b/c i don't remember anything about it.  i was however, in the hospital for 1 month due to complications.  i had a fistula and infection in my neck.  i eventually had another surgery to graph skin from my leg to fix the fistula.  i can't recall my recovery at home either.  i asked the ent surgeon why i can't remember such a major event but he had no idea why.  anyway, now to what i do remember.  i had a very hard time accepting the laryngectomy and the new me.  i couldn't talk for 1.5 yrs and that put me in a deep, deep depression.  when you can't talk you feel very cut off from the rest of the world.  it took about a year or a little longer for food to start tasting like anything.  i had no desire to eat b/c it had no taste.  thanks to the rads my throat is partially closed and i have to have it dilated every few months.  food and pills still get stuck in my throat.  i have to cut all pills, even small one, in half so i can swallow them.  i have to suctio mucus out of my stoma about every hour or so.  i have to clean the lary tube 1 to 2 times a days.

as of today, i am much, much, much better.  i can talk now and that alone made my life better.  i feel as tho i'm among the living again.  i eat anything i want altho food gets stuck sometimes.  i just get it unstuck on go on eating.  i don't mind the lary tube that much any more, i just accept it as part of the new me.  i've been told my voice sounds just like donald duck.  that's fine with me, at least i have a voice and that's a big deal.  my point is, it may be had to accept this life style at first but once you start doing normal things again, i.e., talking and eating, you become less aware of it and life moves forward.  even tho i can't swim anymore i still get in the pool and hang out.  the one thing i miss and probably always will is snorkeling.  that was my passion in life and i'll never be able to do that again.  they make a device thats supposed to be safe for us to snorkel but i just don't trust it.  i'm too afraid it will leak.  anyway, that's only one thing i can't do but i CAN do a million others.  good luck to you and let me know if you have any questions.  i'll be happy to help in any way i can. 

God bless you and your hubby.

dj

hwt's picture
hwt
Posts: 1819
Joined: Jun 2012

Sorry I can't offer any advice but I can send prayers your way. 

Candi

Ladylacy
Posts: 457
Joined: Apr 2012

My husband was diagnosed with laryngeal cancer in July 2010, large tumor but no spread.  He underwent 35 radiation and 2 chemo treatments.  He had a PEG tube inserted before treatment started and it seems like right after radiation started he couldn't swallow anything.  In February of 2011 he had difficulty breathing and the ENT did a trach and another biopsy.  Cancer was back and we were referred to a H&N specialist.  This doctor said that the tumor never went away but was hidden by the swelling in his throat.  He underwent a laryngectomy, partial neck dissection and had to have his throat reconstructed due to the radiation.  Six weeks later he was able to eat again.  I certainly wish he could eat again but due to a second primary at the cervical of his esphoagus that is impossible  now.

My husband had absolutely no problems with his surgery.  In fact he was only in the hospital for 5 days and his specialist was very surprised due to his age and the previous radiation.  Our surgeon joked with us and called my husband a posterboy/man for those that have to have a laryngectomy.  The mucus in his throat is very horrible but it is something that he has learned to live with.  

I remember the first night home from the hospital, I woke up and couldn't hear him breathing and it scared me to death.  But once a laryngectomee you breathe thru the stoma in the neck and they make no sound.  I remember reaching out and touching him to make sure he was still alive.  Something to get used to is all I can say.  Once in a while I hear him make a noise but that is because of the mucus in his throat and/or stoma and once he clears it, it is all quiet again.

Another great site for laryngectomees is www.webwhispers.org.   Much information and great people to help you like here.

Sharon

 

Crazymom's picture
Crazymom
Posts: 286
Joined: Nov 2011

Prayers your way!...hang in there adn things will eventually get better.  Ann

Puggle's picture
Puggle
Posts: 87
Joined: Aug 2011

Thank you all.  It is much appreciated.  I feel much more confident that this is the right aproach for us to take.   I will post on the board and let everyone know how things progress.  As of right now, the plan is for him to be released this weekend and follow up with his ENT within a week to discuss next steps and timing.

DebbieJeanne, can I ask why you were unable to talk for 1.5 years?  Did they not give you a voice prothesis or did you have problems with it?  My husband doesn't have much of a voice now but at least he can communicate a bit.  i can understand how terrible that would be.

debbiejeanne's picture
debbiejeanne
Posts: 2224
Joined: Jan 2010

i used stickies but they didn't work.  i bought a lary button but that didn't work either.  finally after trying and failing for 1.5 yrs. one day the therapist put 3 little holes in mt lary tube and i've been talkig ever since.  I have a tep.

God bless you,

dj

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