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scc of the epiglottis

bigchili
Posts: 8
Joined: Mar 2012

hello, i have been told stage 1 N0 early stage rdiologists wants to radiate surgeon wants to remove epiglottis; cantdecide which one is least invasive, has anyone been through this? which one has the least side effects and how bad? thanks.

longtermsurvivor's picture
longtermsurvivor
Posts: 1836
Joined: Mar 2010

Hey, welcome to the board. I may be asking a dumb question, so bear with me. Unless there are factors that aren't clear, it would be my thought that after surgery to remove the epiglotis you wouldn't be able to swallow, so a permanent feeding tube would be necessary. It would also be my thought that after radiation, you likely would recover swallowing function and be able to eat normally. did this important discussion take place in either office?

If my assumptions are right, to me there would be no problem choosing my course of treatment. In fact, when i had my first primary, it was at the base of the tongue extending very close to the epiglotis. I was told that surgery would render me unable to properlly swallow, so I did choose radiation. It cured my cancer, and left me able to eat solid food. I won't say the radiation was easy. it was not, but it left this very important function intact.

Best to you,

Pat

bigchili
Posts: 8
Joined: Mar 2012

thanks Pat for your reply, local hospital says 35 rad treatments, MD Anderson says surgery to remove part or all of epiglottis, some rehab to swallow differently, he said radiation is no fun at all and will fry it anyway; im definitely confused.

nwasen's picture
nwasen
Posts: 235
Joined: Feb 2011

Surgeons are always going to want to cut.
I had stage 4...huge mass on the back of my tongue plus lymph nodes. I was given a choice of surgery with chemo and radiation or chemo and radiation. I chose the latter as I wanted to be able to eat and swallow and talk like I always have.
Was it easy? No, but a year and a few months out I am almost as good as new.
Even at Stage 1 I would think you might have some radiation or chemo. Be sure to ask.
I had rehab for two months and gave me back my ability to eat almost everything....
Keep us posted
Nancy

bigchili
Posts: 8
Joined: Mar 2012

thanks nancy. i am told early stage ct pet all showing it is confined to epiglottis, no lymph nodes, and so far no more hot spots, i will decide very soon, good luck to you.Ron

longtermsurvivor's picture
longtermsurvivor
Posts: 1836
Joined: Mar 2010

type answers. But I would think the questions that need answered are pretty straightforward. If "some rehab" is all that it takes to get you to swallow again after this surgery, exactly how much rehab are they talking about, and can it fail? Or are they certain you will rehab enough to avoid permanent tube placement. How much surgery is this, exactly? What's the length of stay? Do you get a tracheostomy, and for how long? What about a peg tube? or do you get NG tube feedings, and for how long?

With respect to radiation, you'd be just like everybody else around here. It is a pretty heroic treatment. YOu lose your sense of taste, and salivation. And you probably get those back, but maybe not. It is a a tough treatment, that many of us have been through. It is very successful, and you have a favorable cancer to begin with. But it will likely produce some very real disability. If you are like many of us, that disability is short-medium term, and you will return to good function later. If you are like some, there are potential permanent problems that are possible.

Pat

bigchili
Posts: 8
Joined: Mar 2012

thanks Pat for your insight, i learn something from every response. i think i should have gone straight to MD Anderson to start with instead of trying to handle this ordeal locally. thanks again for your help. Ron.

Puggle's picture
Puggle
Posts: 88
Joined: Aug 2011

Prior to having a PET scan we talked to the surgeon and were planning on having the surgery. It would have been laser surgery to remove the tumor, not the whole epiglottis. The surgeon told us that after the surgery his voice would always be raspy but the benefit was that we could always do radiation after if necessary. It is more difficult to do any kind of throat surgery after radiation. Removal of the whole epiglottis was never mentioned. You may want to confirm this with your doctor.

The surgeon sent us for the PET scan and also told us he wanted us to talk to the radiation oncologist as well... just in case. As it turns out, there was node involvement on one side so the doctors told us that rads and chemo were the way to go. If we went the surgery route we would still have to do radiation and chemo after anyway.

The rads and chemo are brutal but it can be done. Six months out he got the all clear on his H&N cancer. (Got some lung issues now but that's another story... not mets but 2nd primary).

rizzo50
Posts: 1
Joined: Mar 2012

I had similar diagnosis in april 2006, stage 1 in the epiglottis. I chose the transoral laser microsurgery at MD Anderson and supraglottic laryngectomy was performed. Yes, the epiglottis was completely removed and yes, I had some swallowing issues after surgery but a nasal feeding tube was installed for just few (3) days. MDA showed me several different ways to swallow and with practice and patience, I am doing fine now 6 yrs out. Several swallowing tests were perfomed and I no longer aspirate when I swallow. I made all of my follow up appts. and I only have good things to say about MDA. I know this post is few days old but thought you might like to hear from a surgery only perspective, different side of the coin maybe. Best luck in your decision.

longtermsurvivor's picture
longtermsurvivor
Posts: 1836
Joined: Mar 2010

this is pretty neat stuff. I'm hoping the original poster comes back to read your story. having digested what you just said, there's no question what I would do if i were in this situation. thanks for your insight!

Pat

Grandmax4's picture
Grandmax4
Posts: 597
Joined: Dec 2011

On November 2,2012 at The James Cancer Center, in Columbus, Ohio, I underwent robotic surgery and my epiglottis was removed. Also, 4 nodes were removed, but tests on them came back negative.
I have had one spell of pneumonia from aspiration,spent 3 days in the hospital. After weeks of therapy to learn to swallow differently I seem to be doing great now. Had a check-up yesterday and my Dr was very pleased with my healing.
I would like to ask you rizzo50 what type foods you are eating, I am still eating soft foods mashed potatoes, gravy, plain soups, yogurt, ice cream etc. I'm afraid to try solids yet.
I chose surgery because I feel when there's a chance to remove the cancer one should take it, I wanted it out of my body..and I'm extremely blessed that I did not have to have any follow up chemo or radiation.
My main complain is the mucus in my throat, I can't cough hard enough to get it out, it almost feels like it's attached but my Dr doesn't see that ( scope )... any suggestions or encouragement to get rid of this? I feel good, but would feel great if I could cough this crap out.
I'm doublely blessed that I did not require a trach, my shoulders were not affected,I had a feeding tube down my throat for 2 weeks only, and my energy is high.
Have been having a problem with thrush but that's because I'm on a steroid inhaler for mild copd.
I hope you'll find time to answer some of my questions, I really think our cancers and the treatment we chose are rare...thank you

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

A favorite place of nwasen from the postings above....

JG

milkmanswife
Posts: 2
Joined: Jul 2012

My husband is waiting on the appointment to go to The James Cancer Center in Columbus, OH. His ordeal started with removing tonsils although they turned out not to be cancerous and biopsy on epiglottis. He completed 7 weeks of radiation and 5 platinum chemotherapy treatments on Dec. 13th 2011 for SCC on the epiglottis and left side lymph node. He was stage 4 with the epiglottis 80% covered when he started. His first PET scan came back saying it was within the normal ranges of swelling and the Oncologist team said cancer was gone. ENT doc pushed up the second PET scan by a month because a polyp had developed in the center of the epiglottis. The PET scan still came back in the normal ranges but when ENT did biopsy of polyp it came back as SCC. The ENT said that the treatment had just missed a small amount of cancer and it would now have to be removed with surgery said they may remove lymph node also. We are very scared with what is to come. He got really bad with the treatment, had to have peg tube, all the bad side effects. Then appendix burst after treatment was over doc said not related to treatment just bad luck. Not sure what kind of surgery they are going to do now. Have never been to the James, was hoping someone might have some insight on what we should expect. Thank you.

Grandmax4's picture
Grandmax4
Posts: 597
Joined: Dec 2011

2 up, may I ask who is the surgeon you're seeing at The James? If you don't have one, I'd suggest Dr Ricardo Carrau..he's wonderful and will answer all your questions. Best wishes

milkmanswife
Posts: 2
Joined: Jul 2012

I wasn't sure if you were asking me or not but, they called today, he got Dr. Carrau. He sees him on the 24th. Hopefully the surgery won't be too extreme. He has been through so much already. But he is still with us, actually feels great right now. That's why we were shocked that the cancer is still there. Hopefully they will get it all and he can start healing again and someday this will be a distant memory. It does make me feel better that you suggested Dr. Carrau and when they called that is who his appt. is with.

Grandmax4's picture
Grandmax4
Posts: 597
Joined: Dec 2011

I was talking to you. From the moment I met Dr Carrau and his team, I felt safe, I could sense the care they would give me and I wasn't wrong.
The care at The James is excellent, the staff treats you like family, they're very busy but take time with each patient.
Please keep me updated on your Husband, I wish him the very best care and the wisest treatment, and feel confident he'll be getting it from My Doctor.

Grandmax4's picture
Grandmax4
Posts: 597
Joined: Dec 2011

how you liked Dr Carrau and how your Husband is doing?

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