Hello all, as the subject line stated, I'm a new member.I'm 41, married & have 3 beautiful kids (Tesla 2 yrs., Thurman Jr. 7 yrs. & Austin 17).
After a couple of months of having a sore throat & ear aches & headaches, a few Dr. visits, and several courses of antibiotics I underwnt a surgery on Oct. 24th to have a cyst removed from a vocal chord & a biopsy performed on a "highly suspicious lesion" on my epiglottis.
3 days later, pathology confirmed invasive squamous cell carcinoma.
I was sent to the James Cancer center for a consult and exam, had a PET scan, and am scheduled for TORS(transoral robotic-assisted surgery) and neck dissection (both sides).
Removal of the epiglottis, wow, that's not something I'm looking forward to.
I'm scared as to be expected, and am wondering if I'll ever manage to eat on my own again along with a host of hundreds of other worries.
To make matters worse my stepfather who is 60, was diagnosed with a pancoast tumor of the lung that also involves the vertabrae and ribs(not a great prognosis) my mother-in-law who was 61 passed away 2 weeks ago from lung cancer that had spread.
That all being said, I will apologise in advance for any typos, punctuation blunders, etc. as my mind is nearly fried from stress & worry.
I joined here in the hopes of meeting others who may be familiar with the battle that I have begun, and to hopefully make some new friends along the way.

Sorry you have had to join the club no one wants to belong to BUT glad you found this place. There are many GOOD folks who will chime in and lend some thoughts. When is your surgery scheduled for?

Thank you for your comment and the welcome. I'm sorry about the delay in response but, I have had sick kids and have been running like crazy trying to get last minute arrangements made before surgery.
My surgery is scheduled for this coming Wednesday Nov. 23. It seems like there aren't enough hours in the day to squeeze everything in.
I'm becoming more and more stressed (and scared) as the day quickly approaches.
So many things run through your mind before surgery, if you know what I mean.
I'm really concerned about how long of a hospital stay I will have.
I have read that it can be anywhere from 5 days to a month and I haven't saw anyone else listed as having the same surgery that I will have.

Several on this site have had neck dissections on both side but i am not familar with the epi removed. Where is the tumor it self? Tonsil? Base of tongue? Robotic arms can be really a great help to the doc and therefor to you. Sorry the kids are sick at a time when the world is whirling by. So you know what your TNM is? my father is a stage IV base of the tongue cancer survivor - there is hope and good life - more in a bit

oh just reread your original post and see lesion is on epi - what did doc say this will do in change to swallowing? any chemo or rads or just the surgery for now - just is not the right word but you know what i mean

btw one of my good on line friends goes by tcatt and when i first saw your name you scared me that it was her hahahaha

any talk of possible reconstruction of epi?

[Method of epiglottis reconstruction].
[Article in Russian]
Pal'chuk VT.
Abstract
A new technique of epiglottis reconstruction is proposed because of its loss at laryngeal resection for tumor or severe laryngeal injury or scarring. New epiglottis is created from a full-thickness graft taken from oral fundus in the projection of the lower edge of the root of the tongue. Outline of the epiglottis with the petal up is cut on the skin in this region (2.5 x 3.5 cm). The anterior margin of the outline is round, the bottom is square. Hairy skin inside the outline is removed. A cut is made throughout the layers of the oral cavity fundus only in that part of the outline which belongs to the petal. Along the outline only skin and subcutaneous fat are cut horizontally. The created petal is pushed to the pharyngeal cavity. The hole in the oral bottom is closed with connection of its upper edge with the lower one using two thick silk sutures through all thickness of the wall. Illustrations are provided for reconstruction of the epiglottis and lateral wall of the larynx removed during laryngeal resection for tumor.

My understanding from my discussion with my surgeon I have 3 options... 1: aspirate on anything and everything 2:learn a new way of swallowing which involves holding your breath and attempt to get your vocal chords to close and do the epi's job 3: remain on some type of a feeding tube.
Not exactly options that I am fond of.
Any radiation or chemo will depend upon what they do or don't find with the neck dissection.

At first the Dr. said that he believed I was only a stage 1 and said there would most likely be only the partial laryngectomy done. After my PET scan (which didn't even detect the cancer on the epi. The dr. said that PET thresholds are not as miraculous as the general public would like to think) and going over my symptoms ( neck & ear pain) and doing a thorough physical exam of the neck area, I walked out of the office with paperwork for my upcoming surgery that says: " Laryngectomy subtotal supraglottic W/ or W/O radical neck dissection
lymphadenectomy cervical (modified radical neck dissection)
laryngoscopy direct diagnostic with microscope
esophagoscopy diagnostic".

Below that is what I am assuming to be a short summary which says: "transoral robotic supraglottic laryngectomy, bilateral neck dissection, trach placement."

So, I don't really know what stage he is considering it to be right now.

Tcatt is short for a nickname that my stepgrandfather called me when I was a child "Tracy-cat". The old timers used to have an old saying about people being more ornery than a cat bird. I can't explain that either but, I was ornery, and have always loved cats so, it kind of stayed with me.

Thank you for taking the time to read and reply!

wow! my friend is also a Tracey and a cat lover - now if you tell me you like Blue Man Group then I know your online twin I read one person who did leard the new technique of eating - it took them some time - nine months but they did it. another site talks of reconstruct but must have at least 1/3 left to work with according to site - so I guess maybe they will not know til they get in there - hopefully others will have some thoughts. While a tube is not the best answer it is better than the cancer spreading...... wish i had more info

ps - i also sent you a pm - fyi

@ a friend...

The idea of an "online twin" is kind of neat and my music tastes are beyond broad from AC/DC & Disturbed to Rod Stewart or some R&B and an occasional older country song....I can't say that I'm even familiar with the Blue Man Group so, alas, I must not be a twin after all.

Thank you so much for taking the time to pass on all of the info.
It sounds as if your father has been through a lot.

I can't imagine why my Dr. would not have even mentioned at least the possibilty of reconstruction unless he A. din't want to get my hopes up in case it may not be able to be performed in my case or
B. perhaps, because he already knows based upon the location, etc., that it can not be?

Hi Tcatt

You certainly do have a lot on your plate right now. I tried to stay as busy as I could before my own surgery so I wouldn't be able to dwell on the terrible things I was imagining (and I'm REALLY good at that). Hope your kids are all better.

It could be that your doctor wants to have a better idea of what he's facing before discussing the option of reconstruction. Whether this is a case of not wanting to dash your hopes, or of the doc wanting to cover his, um, bases, it's hard to say. I'm hopeful that he will be able to rebuild your epiglottis at some point.

Another cat lover? Yay! My kitty, Mr Pib, was an important part of my recovery. I really think he helped me start talking again because I knew he wouldn't make fun of me (not that anyone did) when my tongue was still raw and new.

I'm not a religious woman, but the night before my surgery, I prayed a lot for my doctor and his team. I didn't pray for myself because I had complete trust in them. This might be helpful to you.

You and your family are in my thoughts.

Julia

I will be thinking of you this week

Thinking of you Tcatt! Not fair that you have to miss Thanksgiving dinner this year but at least you're spared the cooking and cleaning.

Once you're up to it, let us know how you're doing.

Mimi

Yikes...only about 5 & a half hours till I have to report to admitting(@ 5:00 am)
I'm definitely not looking forward to this
We are at a motel that's only about 20 minutes away from the hospital.
I will post a short update when I am able. Thank you all.


@ Mimi McC. Thank you! I'm not that crazy about turkey anyway.