what questions to ask the ENT today?

[Bettybuckets]

I am just back from 4 weeks visiting friends in NZ and then a friend from nz came back to the USA with me and for past 3 weeks we explored fall foliage in Maine and then just had 4 days sightseeing in Washington DC. So todays important ENT appt snuck up on me!

I have one paralyzed vocal chord which makes my voice rasp. Previously, the ENT sent me away for voice training but that hasn’t worked. The chord paralysis may be caused by a tumor pressing on the nerve that coordinates the two vocal chords. I have lobular so nothing shows up on scans.

Has anyone had this? What questions should I be asking during this short visit? I hear they can put Teflon or other filler in by the non working vocal chord to fill the space so I won’t warble like an old lady. I suppose I should ask what if it gets worse and both sides get paralyzed then I may aspirate food. What to do then? I am sad that as our world gets smaller and I am more tired- I always thought I could keep up with friends visiting me or just chat on the phone but now my voice is giving out too. Has anyone experienced this?

[LibraryGeek]

Can’t help with your question but your trip sounds fabulous- and how great that your friend came back with you. I was supposed to do a Fall in New England trip for my silver wedding anniversary in 2020 but was first cancelled because of Covid, and I would have been there now but had to go on chemo and couldn’t get insurance (UK). Still hope to make a shorter visit in the future…

You have done so well to do this trip.

Jackie x

[Bettybuckets in reply to LibraryGeek]

I am so sorry you missed out but hope you can go another time. Insurance for all of us and our much anticipated trips is such a big problem… especially for overseas visitors to the usa.

[Claireperth]

no help here, I have a weak hand from a similar situation! Glad to hear you got out and travelled! 🥂

[Bettybuckets in reply to Claireperth]

Hello Claire in Perth- that must be hard not to have strength in your hand. From nerves?

[Claireperth in reply to Bettybuckets]

yes tumour on shoulder tangled with nerves and lymph nodes under arm which damaged nerves going down to the finger tips! It’s very debilitating as I am right handed! Oh well that’s the breaks with MBC!! Cheers Claire

[Bettybuckets in reply to Claireperth]

gosh I didn’t even know that could be a thing. The big bulgy lymph node on my neck bugs me every day and would like to zap it away. Dr likes it to be trh canary in the coal mine go tell if therapy is working. I think it will lead to spread to brain or other deadly outcome. Did they consider radiation to it? I have never had radiation but it seems like it helps so many people.

[Claireperth in reply to Bettybuckets]

Ibranc reduced the tumour thank goodness as my arm swelled up to twice its normal size! However I am left with permanently damaged nerves and a very damaged lymphatic system in that arm which becomes swollen and very painful from time to time!!

[Bettybuckets in reply to Claireperth]

I have had minor issues from the 14 lymph nodes removed. Only one was positive. But from that they told me to avoid hots tubs flying and hot tubs. Darn those are 3 iof my fav things!

[Claireperth in reply to Bettybuckets]

i had 12 nodes removed which were all bad unfortunately.

[MyMiracle13]

Hello. Yes I have experienced this when I was first diagnosed with MBC in 2018. It turned out to be a tumor on the mediastinal and hilar area which was pressing on something that affects the voice. I don’t think it was a nerve but my ENT called it something and told me that looking at the scan, he didn’t want to do anything invasive because whatever the tumor was pressing on was too close to the heart. It lasted for almost 3 months but with God’s mercy, Ibrance shrank the tumor and my voice was restored.

[Bettybuckets in reply to MyMiracle13]

that is a nice and miraculous story. So happy for you!

[MyMiracle13 in reply to Bettybuckets]

I believe with the right medication, the tumor will shrink and not press on your vocal chord.

[Aprilfoolz1]

Betty, your trips sound wonderful ! My stage IV dx was finally discovered due to laryngitis due to a left side paralyzed vocal cord (I had a few other symptoms that both cancer ctr and general practitioner said was a virus, pre-Covid). I had many enlarged and distant lymph nodes of cancer including one pinching my left laryngeal nerve . I have idc so these showed up on scans . Wouldn't a petscan show higher levels of FDG tracer with ILC ? There is a newer type of petscan that utilizes estrogen that works better for ILC that is hormone positive, maybe called FES Pet?. In my case, Ibrance and fulvestrant shrunk the lymph nodes almost immediately but my voice did not come back . I saw a different otolaryngologist about 6 months into treatment who told me that the laryngeal nerve is not flexible so he did not expect it to "bounce back " or recover. (This is after the scoping test that is projected on a tv monitor as I drink opaque liquid so they could see / video the paralysis). 2 months later , my voice came back. Redid the scoping test / video and my left vocal cord is almost at 100% ability.

Depending on how long your vocal cord has been paralyzed it could come back. The doctor mentioned to me surgery to add filler or shim it closer to the other side but I don't know how successful or invasive that procedure is .

I have a lot of empathy for you as having my vocal quality poor and distorted was a constant reminder to me that I had cancer and I talk a lot in my job so it was frustrating (and sad ).

Let us know what the doctor advises !

[Bettybuckets in reply to Aprilfoolz1]

Thanks for writing… I think it has been going on too long to come back but glad Ibrance helped you. I was on it for 18 m and now on Verzenio… and it hasn’t improved things. I feel just like you… that my sore tired voice is a constant reminder. Also worried for if it gets worse cause talking with friends is my joy and I talk a lot. They advised me to practice active listening. And get some voice training. Sounds slow and frustrating as it is an hour away and that is tiring. They said I could do some training as a zoom call.

[Aprilfoolz1 in reply to Bettybuckets]

How long has your vocal cord been paralyzed ? My came back after 8 months . I would try the zoom speech/ voice training and get more info on the filler / injections . I hope something helps to get your voice quality closer to " normal ".

[Bettybuckets in reply to Aprilfoolz1]

it came on gradually but I think 6months. You said your came back after 2 months. What did you do to fix it? I had the scope down my nose and watched it on the TV screen but didn’t drink anything. Was it the white liquid that fixed you? Or did you do the speech training or just rest and then it recovered? Very interesting and happy for you!

[Aprilfoolz1 in reply to Bettybuckets]

I saw the otolaryngologist 5.5 months after my "laryngitis" onset and 4 months after starting Ibrance / fulvestrant . At this time (5.5 months with laryngitis) the otolaryngologist did the scoping and said left cord 90% paralyzed and unlikely to "bounce" back as it had been almost 6 months and it is not a flexible nerve once pushed out of shape. I had been seen by oncology ctr and pcp but they didn't take me seriously for 10-12 weeks which delayed starting treatment. I scheduled the appt as soon as I started treatment but of course there was a few months wait to see this otolaryngologist . I could tell the I/F was working to kill off / shrink the cancer because I had a petscan after 3 months that showed a dramatic decrease in FDG and besides laryngitis I had a lot of pressure on my windpipe which started to disappear within weeks of starting treatment . I could finally sleep lying down again (so thankful !)

First appt with otolaryngologist was 2/25/19. Covid shutdowns in Seattle started in March so I didn't pursue any speech training at this point . I noticed in the end of April my voice started to come back. Slowly . At first it was better in the am but would go back to "laryngitis " by 2pm. This slowly continued to improve. Early May it was "normal". I called to cancel my f/u appt of 5/26/19 with the otolaryngologist and they didn't cancel but had me come back in and redid the video scoping . My left cord was now 10% paralyzed so a dramatic improvement . Doctor was so happy and surprised . I had completed my second petscan by this time and it showed the superclavical lymph node that was the reason for paralysis completely resolved . The opaque water for the video scoping was used to see clearly as they observed my vocal cords while I repeated sounds for the doctor , it had nothing to do with fixing the paralysis.

Sorry for the long explanation. I am hoping this gives you some hope that your vocal cord could "come back".

Edited to add: Covid did slow my work temporarily at this time which consequently gave me vocal rest . I don't think that is what fixed it but it could have helped .

[Bettybuckets in reply to Aprilfoolz1]

I think my thank you post didn’t go up. I really appreciate the explanation. Thank you for taking the time. This is surprising hard for me. My friends keep thinking I’m crying or on the verge of tears from trh sound of my voice… I’m not! And it is frustrating that on the phone some have asked if I am crating when I am just talking. I know it is first world problems as many more worry about pain and real hard issues. I just Prost it doesn’t get worse.

[RB_77]

You’re definitely not on your own, my wife had appointment with ENT for paralysed left vocal chord this week (same reason). Options were do nothing and see if chemo works, speech therapy or filler injection. She’s chosen speech therapy for now as first chemo cycle. Would be interested to hear if anyone has had filler option.

[Bettybuckets in reply to RB_77]

thank you! I too will try voice therapy. Any improvements with the voice training yet?

[RB_77 in reply to Bettybuckets]

No sessions yet, have to wait for a referral so might be a while 😀

[Bettybuckets in reply to RB_77]

keep me posted. I’m going to call and try for an appt

[JKMS]

Hi - different cause but one of my vocal cords was paralysed during surgery to remove the mets in my mediastinum. They stated it would improve but I was doubtful and pushed to see an ENT surgeon, rather than just a speech therapist. I had a vocal cord medialisation which was a quick procedure under general and I have had no issues since. They said I would need to have the procedure regularly but I have had no issues since then thankfully. I really hope you resolve the issue successfully as I agree it can be tough on top of everything else we have to face.

[Bettybuckets in reply to JKMS]

oh thank you for weighing in. Is there a difference between an ent and an ent surgeon? I am going to google that procedure to become more aware of options. Thank you so much.

[JKMS in reply to Bettybuckets]

I think they are same - in the UK we would tend to describe the specialist as a ENT consultant/surgeon rather than just an ENT. I really found it one of the easiest procedures I have had with no pain after and would have again in a heartbeat if required.

[Bettybuckets]

I talk a lot of pleasure but now it hurts. They are pushing for slow voice training which I ageeed to because no risk and I am afraid of being put to sleep and dying. But this quality of life Is making it easier to consider and I don’t think I will be good at following directions of voice training. So I don’t wNt more months of not being able to talk without pain. I will get help from my oncologist. Sure would be great if I could get my ovaries out AND do this procedure at the same time. One stop shopping.

[Hidden]

yes bettybuckets I have the paralyzed vocal cord , it it it is very frustrating. My EMT agave me an injection of collagen into the cord . It has worked , I had feared it had quit working and was fading again to which he said no to use my voice more . It was so depressing loosing my voice , it was gone for about a year thru the pandemic. .

My voice is not the normal but at least I can talk and be understood.

Good luck , communicating is so important.

Luann

[Hidden in reply to Hidden]

sorry ENT