I have been a member for awhile, but haven't posted. Been diagnosed with tongue cancer. I don't have the exact staging as yet. But the tumor in the base of the tongue is large, and I believe I have 2 nodes that are "hypermetabolic" which I guess means cancer. Pet showed no other cancer.

I would like to talk to someone who may have had this type of cancer.

Sandy

I am sorry about your diagnosis. You have found the right place for support and information. You can search both the main site and the postings for information on just about anything.

My 2nd tumor was in my tongue, but not at the base. Are you being treated at a Cancer Center? What choices have the doctors given you for treatment? Found early these cancers are very treatable and survivable.

I wish you the best.

Patty

Patty:
I live in Northern Va.out DC. Have really top notch doctors who specialize in H&N, but not at CC. May get second opion at Johns Hopkins.

The tumor in the tongue is large. They do not want to remove it. No nodes involved. No other cancer found. They plan on doing rad and chemo. Have meeting with medical oncologist on Thursday. Will have all info at that time.

Guestion: How does it feel to eat, swall and talk with 80% tongue removed?

Sandy, you have come to the right place, there are many here who have similar DX, and will be glad to help, mine was in my left tonsil, so cannot help with your Dx. Most of us have had similar TX. Good Luck and best wishes. Semper-Fi Bob

Sandy,

How were you diagnosed?

You say they are going to remove 80% of your tongue and the Primary is BOT?

What have they said about the nodes...size...any surgery planned?

Do you have a history of tobacco use?

How are your teeth and have you been to see a dentist familiar with the effects of radiation to the OC?

Before I would let someone take 80% of my tongue I would definitely get at least another opinion and I would get it from a CCC.

Sandy

If I were you I would go to John Hopkins or another cancer center for that second opinion. It just doesn't hurt to get more than one view on things before you start treatment.

As for your question about eating, swallowing and talking - I have a free flap that was made from my pectoral muscle. It is sewn down to the floor of my mouth. It does not move around like a tongue would. I swallow pretty well and I am now working on swallowing things with lumps like oatmeal with the hope of being able to add a lot of things to my diet in the future like pasta, soups that are not creamed and such. I talk fairly well. There are some letters that you can not form very well without a tongue, like "G" (this is a drag since my last name starts with a G). I also have trouble with some "s" words and "sh" words. I am able to communicate fairly well as long as the person on the other end is listening and patient. Some days are better than others. Right after my surgery I was the perfect woman - I really could not talk at all.

I hope this answers some of your questions. Make sure that you get all the information that you feel you need before you make a decision on treatment/surgery. Take Care

Patty

Hey Sandy,

Sorry that you are here with this kind of news.

Mine was tonsils, BOT, nodes in the neck. They did remove the nodes, lots of tonsil and part of the tongue, but not nearly 80%.

I don't notice the tongue, but seem to miss the tissue from the throat as well as functioning saliva glands. (Xerostomia). This seems to continue to improve a little at a time.

After about 2 years I seem to be able to swallow lots of things that aren't dry and I am very grateful for a dentist that refused to let me give up on the teeth.

Finding this group of people early is a true stroke of luck for you, I wish I had.

Be watching for ya, good luck!

UncleVern

Sandy

There is a CCC right near Northern Virgina/DC : the Lombardi Cancer Center at Georgetown Hospital - right across the Key Bridge and up a few blocks. In case you want something closer than John Hopkins in Baltimore.
there were lots of head and neck patients in the radiation waiting room when I was being treated there. Plus I am planning on having my recurrence surgery there. I went over a year after finishing treatment without needing surgery and even now with stage IV coming back, they are not talking 80% of my tongue. I echo the advice from the other posters to get a CCC workup.
Good luck.

David:
Thanks for your concern. Won't see medical oncologist until Thursday for exact staging. What I think is large (T3-4) tumor in base of tongue. Don't think nodes are involved. Bilateral modes are only 8mm but possible incroching cancer.
No cancer anywhere else. My team are suggesting tomotherapy with radiation and chemo. I don't believe they are going to suggest surgery at this time, but not 100% positive until Thursday. Thanks Sandy

Charm: We live near each other. I live in Annandale, VA.
As you know both Lombardi and Johns Hopkins are within easy driving distance. I have call JH to inquire about a 2nd opinion, but it'll take 1-2 weeks before results.
My current team does not want to do surgery. Unless I learn something different on Thursday, the plan is radiation and chemo. I believe my cancer is a little more aggressive so I really don't want to wait much long. My lymph nodes are small (8mm) but there is some activity showing but I think rad can take care of that. I'm trying to work all the angles. My oncology team is excellent. The only difference in treatment would be should I have surgery or just do the rad/chemo at this time. The tomotherapy I'll be getting is the most precise. With my own research I think I have a T3NOMO, but I won't have a difinite until Thursday.