Hello everyone. I am new to this site and still trying to find useful info. I was diagnosed with stage 4 tongue cancer in August 2006 that had spread to lymph nodes in right neck. I had surgery in September 2006 to remove a 3" tumor from tongue, remove lymph nodes followed by 6 1/2 weeks of radition and chemo. Everything seemed pretty good for a period of time. My checkup in February 2008 showed granualtion on the tongue it was decided to remove some scar tissue to give better movement. Biopsy also taken showed cancer cells again. Went back for more surgery in May 2008 to remove another part of tongue and implant tubes for brachetherapy (1 week). This severely weekened me and I haven't worked since then. All these procedures were done in PA and I moved to TN to be near family. Had a checkup and biopsy in December which didn't show anything. Had another biopsy in February because small spots had appeared on tongue. Cancer had returned for the third time. CT scan was performed and cancer is localized but surgery suggested by Vanderbilt Medical Center is removing most of the tongue, right jaw bone,and some bottom of the mouth. The fibula will be removed to fashion the jaw bone replacement. Tissue and skin will also be removed from leg. The surgery is a 14-hour ordeal and I am trying to find info on some alternative option. I haven't found anything yet. I haven't read much yet to see what others that have gone through this surgery have to deal with or how they made out.

Hi Richard
welcome to OCF.The treatment you have mentioned is fairly routine and has been undergone by many people on this site who i am sure will be more than happy to answer any questions you may have.Nevertheless it is major invasive surgery and considering all you have gone through it will be one tough fight.The doctors obviously feel that having chased this around for a couple of years its time to get aggresive with it,and i am not sure you will find much in the way of alternatives,but its always worth asking for another opinion i guess.i hope by coming here you will find some of the answers you are looking for.

good luck liz

Hello Richard and welcome to OCF. You will find lots of helpful information here and answers to your questions. Also, loads of support which for me has been such a blessing as I work through this.

I have had surgery similar to what you are describe I believe. You can read my signature below. I would suggest that you add one to your profile also. It makes it a lot easier for you than having to explain everything more than once.

I am only 5 months post surgery - it will be 6 months on the 25th of March and I am still healing. You did not mention if they intended to do a free flap when they removed more of your tongue. That part has been the biggest adjustment for me.

The mandible replacement has not been too hard to adjust to really. It looks a little different and the swelling is still going down, but it is vastly improved from just after surgery. The main reason that they did my replacement was that the cancer had spread to the bone and it was the best way to get all of the cancer. That is the goal for the surgeons. To remove the cancer and obtain clear margins so that it does not recur.

Did you have any radiation treatment after your first surgeries?

I hope that this helps you. Feel free to ask anything that you want. I wish you luck in your journey

Patty

Hello Richard, Two things to consider: First, do you have the means to seek out a second or third opinion before you undergo the proposed surgery? Second, Have they tested your thyroid output as a possible cause for your fatigue? If no, do it now! If yes make sure you are tested frequently (3 to 4 months)

Welcome to OCF. You will find lots of info here and also on the main OCF pages. The procedure you have described is something several other OCF members have gone thru. I wish you the best of luck with everything.

Hello Patty,

Thank you. Yes, it seems you have been through much the same as I have. I had radiation & chemo after the first surgery and radiation again after the 3rd surgery.
They are doing a flap and I wonder how that will be. I know it will be a huge adjustment. How is the talking and swallowing? I have seen pictures of the mandible replacement and it looks like it goes pretty smooth. They had to remove all my teeth in September and I have been too sore to wear the replacements yet. The ones I have will probably have to be altered.
My surgery is April 7th so not much longer.

Hello Mark,

I have a second opinion. I know they tested my thyroid but I can't remember when. I will have to check. One of my problems is I had all my previous work done in PA and just recently moved to TN, so I have to go back and forth for info.

Thank you Liz. I have already found a lot of info and I just started.

Richard

Regarding info, I have found the best way is to get a copy of everything, esp biopsies and scans (sometimes they want to charge for scan copy on CD; tell them it is copy for referring doc out of town), then I make sure that each doc gets a copy -- Even inside the same hospital or clinic, the reports don't always make it to the system in a timely manner because 'filing' is often the least desirable thing for staff to do).

I recently sent a complete set of biopsies to the oral surgeon who did some for me last century -- I will likely never see the guy again, now living on the diagonally opposite side of the US, but it's for his info that the lesions we kept biopsying without positives for SCC finally grew a tumor (Fifteen years from first biopsy in Germany to actual tumor!).