I am 39 and have squamous cell carcinoma of the oral cavity. I have been dealing with this for 9 years and have had surgery of some form every 4 months or more this entire time. I went for another opionion recently and was told I now need a modified radicle neck resection and I am scared to death! anyone out there ever had this done or something similar let me know. They are talking trach's and feeding tubes (temporarily they say but who knows) Help!

Hello Ann, Yes many have had the operation you mention. The surgery is not that bad. I am concerned, though, that you need to be seen at a comprehensive cancer center. Have you had radiation?

Ann,

I'm sorry you've had such a long series of encounters with this disease. I'm guessing your prior treatments haven't been at major cancer centers (have they?). Oral cancer doesn't respond well to half-measures and usually is best dealt with early on with a fairly aggressive approach.

Please be sure to get an opinion from a major cancer center where you have access to specialists in surgery, radiation and chemo who can evaluate your circumstances and come up with a plan of attack. You should not have to have surgery every few months to deal with this.

A modified radical neck dissection is a fairly common procedure and tends to sound worse than it is. Many of us here have had them and found that we healed well (and quickly) afterward -- the surgeon may need to remove a number of lymph nodes to test whether and to what extent the cancer may have spread.

There is a wealth of information on this site to help you understand more about oral cancer, the risk factors associated with it, and the resources available to help treat it. Try to use what's here to come up with the questions you need to ask your doctors, and feel free to check back in here to let us know how you're doing.

Cathy

What you have been through treatment-wise seems completely out of the realm of what is normal for the rest of us that are posting here. It sounds like your diagnosis and treatment planning have been directed completely by a person or persons who have a distinct surgical inclination, as in most cases combination therapies yield the best long term results, certainly ones that do not require constant surgical interventions. It sounds like you would be best served at this time by a consultation with a multidisciplinary diagnostic and treatment team. What you are describing seems well out of the norm in the manner of treatment.

I am now going to get another conxult at Sloan Kettering. Even though the MD I went to last week was good I am afraid of having a PEG tube put in before the surgery. They are planning the neck resection as well as juaw resection , take out the floor of the mouth with primary closre and I think part of the tounge as weel. That scares me to think I might not eat again. U dib;t know what stage I am since I didn't know such a thing exhisted until I talked to everyone here. My hysband and I are very anxious. Thanks for all your support. Anybofy ever had a feeding tube reaulting from surgery that they got off of?

Ann,

The whole point of feeding tubes, ideally, is to be used as *temporary* intervention when someone is being treated for something where the treatment interferes with eating. But I think the stereotype people have sometimes is that once you have one, its harder, somehow, to get back to eating on your own.

I didn't have to have a feeding tube from my tongue surgery and neck dissection but my cancer had not spread to the floor of the mouth yet. I know there are several people here who have had that surgery, though, and recovered quite well--including only needing the tube briefly. Please don't be scared of the tube, it's not a life sentence by any means, its just a way to keep you nourished and thus help you heal faster.

I am using a feeding tube now because I had radiation which resulted in bad mucositis and it got to be too painful to eat anything and I am still having a VERY hard time eating anything orally. I don't know where I'd be if feeding tubes hadn't been invented but I do know I'd be in a lot worse shape than I am!

I'm sorry to learn you've been struggling with this for so long--was it leukoplakia before or also scc that you had surgery for? Anyway, no one wants to ahve the qualifications to join this group here, but I can tell you its a great group of folks who have supported me enormously with both encouragement and information throughout my battle the last 6 months. Please do come back and let us know what they tell you at Sloan Kettering and how you are doing.

Nelie

Hi Ann, What Nelie says is all true. I have had the surgery. It is not so bad. The tube is a piece of cake, but are you being seen by a comprerhensive cancer treatment center. I think you should see a couple of good oncologists before this surgey.

steve

things have changed again since this morning. I am now going to seek a consult at Duke here in NC so we don't have to travel 1000 miles for an appointmnet. Thanks for all your support! I have felt much for relieved since talking to all of you.

Ann,
Hang in there! Ask questions and going to a major hospital specializing in oral/head/ maxilifacial is IMPERATIVE. If you are in the right place they will guide you.
I had a tongue resection, grafted from my thigh, 2 tumors removed at the base of my tongue, and the right side of my neck resected and all the nodes taken out. My surgery went very well and I luckily didnt need any kind of therapy. There was a drain in my neck for a day. Unfortunatley I had to have 42 treatments of radiation and thats what knocked me for a loop. I also had a peg tube. Dont be afraid of that, I begged them to put one in I was so weak. They wanted to prior to the radiation and I was tooo stubborn. Please listen to what they reccommend. Good luck at Duke! Maria

PS I was 33 when diagnosed w/SCC on the tongue.Maria