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Caretaker: Laryngectomy alternatives?
My partner was treated in 2015 for Stage IVa left true vocal fold SCC. Treated with Chemo (Cisplatin) and Radiation. Followed by bilateral neck dissection. He worked through the entire treatment & was an amazing rockstar. Refused JPEG until the very end when his throat was extremely raw. Things started to change 2 years ago when he started having alot of heart/breathing issues. Next aspiration pneumonia (probably hospitalized 10 x's in that 2 years). Went from 220 to 145 in 6 months. Anyways, they finally figured out that he was having swallowing issues. Started back with Speech but not getting better. Finally had to have a JPEG put back in last year. Back up to 175 and when we went to ENT found that both vocal cords were moving so he did a round of filler & stretch. Voice was great and the amount of phlegm decreased significantly. 2 months later, decline in voice & increase in phlegm. Total failure on swallow study. Another round of injections with a calcium base & stretch. Barely any change. Last appointment ENT feels that the muscle moving his voicebox up to swallow has fibrosis/atrophy as well as some dead nerves where he can't feel the aspirations.
Options don't feel all that great. Stay as he is and possibly have constant aspiration on saliva or a Laryngectomy.
I'm looking to have him get a 2nd opinion, but I'm stuck on where to look. Depending on location it would more than likely have to be a televisit. I'm at a loss on what else can be done.
The ENT made it sound like the Laryngectomy would solve the aspiration & he would be able to eat again, then I started into the black hole of the internet. He's in his early 70's and is working on regaining his strength. They also treated him for prostate cancer last year with Hormone therapy that was absolutely brutal on his body while dealing with the other issues.
Can anyone else provide insight on real life after a Laryngectomy?
I'm his only support so it's been a bit rough so I feel like I'm spewing out alot of information.
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I don’t know anything about this. Just came to say I’ll pray 🙏🏼.
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2 ReactionsLaryngectomy is not uncommon in throat cancer patients, often occurring early on in treatment but occasionally much later. No one wants to lose their voice in this world but it's not the end of living either. I had a friend who went through similar yet lived many years after treatment, dying from heart issues years later. He refused to use a type to voice pad or any similar devices. He simply kept a small notepad and pen in his pocket for communication and came up with clever gestures to get his point across at meetings or in public. So life changing? Not really. Just different.
Sad to read what your partner is going through. No one should have to make decisions like this in life. Courage.
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2 ReactionsThanks for your feedback. It's not the loss of voice (though that is a big deal), it's the idea that the medical professionals don't seem to be willing to look at other alternatives. Plus, when I start on a deep dive on the "real life" consequences of the surgery, it is much more difficult than they like to let on (same as the real after affects of all the cancer treatments).
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2 ReactionsI'm so sorry his cancer returned. It can be so exhausting as both the patient and the caregiver to have to do all of the work in finding what other options are out there. Not just that but if you still work, it starts to interfere with that while you make countless calls, emails, and internet searches trying to see what else is out there.
Good Luck to your husband and I hope that this avenue pans out for you.
Hannah
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1 ReactionHi.
My last radiation treatment was Dec. 20, 2024
After my first post radiation checkup everything is worse, more pain (now in my ear) and total loss of voice…
Has anyone experienced something similar?
I’m freaking out. It’s been 2 weeks since I lost my voice and less sound comes out day by day…
Hi @radiationroko Almost four months out and this is happening to you. It does seem unusual and as I often suggest, if things seem to be getting worse during recovery, it’s time to get to the ENT or Oncologist to have a check.
The ear pain is not uncommon although rather annoying. OTC pain meds might help with the ear but I would get into a conversation about my voice loss soon. Good healing otherwise.
My husband had a laryngectomy in August 2023. It was definitely a big adjustment for him (he’s a professor), but he’s doing very well now. No more worries about aspirating, and he’s in much better shape than he’s been since his vocal cord cancer recurred in 2022. Hang in there!
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