Getting told I had a Stage IV tumor that had spread to the lymph nodes prompted me to make a sculpey clay version for "show and tell". The CT had my tumor described as "this enhancing lesion yet I do not believe it enhanced anything in my life so I will use the term tumor. It measured 2.5 cm in AP direction and 2.8cm in transverse dimension by 3.6 in craniocaudal direction. (I confess I never looked up those terms and just did my clay model by LxWxD). Just curious as to the dimensions of other posters tumors when discovered. The ENT surgeon said that while she could get in to take it out, she could not put me back together, so I just did radiation and chemo.

My tumor was 4.778cm. Now you have me curious about the other dimensions, I'll have to find the paperwork.

Funny, I just asked another OCF board contributor the size of his tumor. My doctors advised me that if it was a stage I or II classification that either surgery or radiation would suffice. And if it was larger then it would be chemo/radiation and then afterwards maybe surgery. Because of the size and location of the tumor they all recommended surgery then radiation and no chemo. The one doctor told me if you have to get a tumor on the tongue you have it in the best possible spot for access. I don't feel that lucky. All of them are very confident that I have this disease beaten. The one day my mom said to my RO, "Boy, I come here every day with my son...your job is so depressing. How do you do it all?" My RO replied, "It's cases like your sons' that made me and keep me as a doctor." I felt real good about his answer. Then my mom goes, "So, it's a guarantee that my son is going to beat this cancer." RO goes, "There's no guarantee's in life." LOL..Way to go MOM...LOL...Way to go.

My cause is unknown. They all agree because of tumor location it was not HPV related. One thinks it's because I work with various chemicals at work, I do work with a lot of carcinogens. Another says we'll never know. Another thinks that my tongue was being agitated for years before I got this cancer. I looked up my records and noticed I went to my dentist 4 or 5 times in 2006, I was having trouble with a rough molar/filling and it was rubbing my tongue. It was fixed, but in late 2007 my tongue would burn with spicy foods in that same spot...a couple of times I would get a canker sore or a cluster of sores on that side but they always healed. Since then I have found out that I'm the 4th person in my family with H&N cancers. So, there is a weak link in the bloodline.

Then in late April 2008 a sore developed. In June/July it exploded in size. My PD and OS were very shocked at the situation. They kept saying it can't be cancer. My ENT said in another six mo's it would not have been good. My ENT moved very quick, received my case on a Friday, saw me that Monday, PET scan and meeting with an MO that Tuesday, exploratory surgery and a biopsy on Wednesday(he came in the recovery room and told us it's cancer but we'll wait for the pathology tests). The following week I saw my RO and a few days after that was neck dissection and tumor removal. And I didn't have to make one appointment. My ENT told me one day, "My staff made a mistake you're not seeing that RO, there's nothing wrong with Dr. So-n-so, but he's not an expert on H&N/OC's you'll be seeing this RO...My ENT probably saved my life.

I ran into the same sort of attitude when I was doing a barium swallowing test -- I passed the test and everyone involved was very happy -- I got the feeling that mine was the first successful test on that day and it cheered them all up!

they removed a section of my tongue that included clean margins

6.2 x 3.7 x 2.9cm

the tumor was 4.7cm at it's greatest dimension

I wish I had every cm back........

I agree with Ray - I would really like to have my tongue back so that I could eat real foods. I am sure that the foods I can eat will get better after radiation ends, but there are so many things that may not be possible. How do you adjust??

How can one NOT adjust?

It is what it is and looking back doesn't change it one bit. I used to enjoy shellfish, but allergy took that away totally. At least I can still taste some things in the aftermath of this disease!

Or as put much better than I could,

"The Moving Finger writes; and, having writ,
Moves on: nor all your Piety nor Wit
Shall lure it back to cancel half a Line,
Nor all your Tears wash out a Word of it"

may i ask a question of those who have had part of their tongue removed?

they told me when i had my surgery to remove the jaw and upper palate that i could have the surgery later that would seal the hole up with skin from my wrist etc ... or i could have that plus a bone removed from my leg to make a new jaw etc ...

well the one where they just cover it with the skin from the wrist they tell me you cannot eat on it after surgery really as it can make a hole in it ... this is the reason i think i will sticck with the prosthesis thingy and not have the reconstruction surgery - a lot of work for not much benefit i think (at least for now, i may change my mind?)

so this makes me curious - if they remove part of the tongue, they repair it with other skin, right? if so, then can you use it as you did prior or will it be sensitive and easy to damage without being careful with how you eat etc? and do they do the repair / skin replacement at the same time as the initial tumor removal surgery?

thanks to anyone who can answer ...

I had 40% of my tongue removed due to tumor and I did not have a free-flap. They made an incision in the floor of my mouth so that the tongue would lay or heal flat. I didn't quite understand it all and it was all done/planned before I found this site. I was able to talk and eat well until radiation. If I can get back to the point of post surgery I would be a very happy camper.

Another thing the doctors(my ENT & RO) were concerned about was that they said my cancer was extremely aggressive and they wanted me in radiation as soon as possible after surgery. My OS and FD told me the opposite when they were like you have time this is a very slow cancer...blah..blah..blah. I knew something was wrong when it from not being seen in April to 4.778cm by July. Most of that growth took place in June/July. If my first two doctors didn't dilly-dally around, it could have been different. I didn't know better to be "AGGRESSIVE" myself and I blame "ME" for that act. I probably could have had the surgery back in June instead of August if I was a different type of patient. It was a tough lesson to learn.

I never discussed this with my doctor(s) but can reconstructive tongue surgery be performed after radiation? (I might start a new topic for this). I had surgery and then 7 weeks of IMRT. I know some people have radiation then surgery and sometimes I wish I took that route. My RO did not recommend it for me, he said the best course of action for my cure was surgery then radiation.

Ray

I can't answer your question about how well can reconstructive tongue surgery be done after radiation based on experience yet. I was really glad about skipping any surgery - but if there is a reoccurence on a more accessible part of the tongue than before, my ENT has mentioned this as Plan B. All was well until this last visit, when I mentioned how my tongue feels "fat" like it used to after dental novocain shots so she did an extra careful palipation. It could be just be radiation scarring and there wasn't anything to really biopsy,so in limbo until next checkup in January.
It is heartening to read about the spirit and vigor that you still have after tongue surgery. Just preparing for the worst, but hoping for the best

I had radiation two years before my free flap surgery -- The tongue essentially has two parts, BOT and Mobile, with the BOT being the vertical part in throat and the mobile being the horizontal part in your mouth -- In this surgery, they cut out the front third or half of the mobile tongue and then sewed the flap (from my forearm) to the remaining mobile part and to the floor of my mouth on the edges.

The resulting 'new' tongue cannot stick out or anything like that, but it can be rippled from side to side or front to back by the remaining mobile part. I can move food to the back of my mouth or move it around for chewing, but I can't lick my lips or anything like that (I now 'lick' the ice cream spoon with my lower lip). Also, I can't move food forwards once it is on the old parts -- I have to 'huff' it forwards with an exhalation.