My mother was recently diagnosed with stage 4a base of tongue cancer with bilateral mets to neck nodes. The tumor on the base of the tongue mushrooms out the back of her tongue and has grown forward towards the chin bone. It is 5cmx4cmx2cm. She had went to doctors for 3 years with pain before her 2nd ENT found it. The doctors told her she had arthritis, stress (my dad has been battling renal cell cancer for 3 yrs), and her dentist was treating her for TMJ and made her a bite plate. We went to Mayo for a 2nd opinion. The ENT surgeon there said her tumor was massive...that he had only seen 10 in 35 years this size and her options were 1. do nothing and die 2. total tongue removal followed by chemo/rad and would never eat, talk and have a trach or 3. chemo/rad. She is going for chemo and rad...Has anyone else had a BOT this larege?

Welcome to OCF! Im so sorry that your mother is so sick! It must be very difficult for you too. Im sorry but I do not know about the sizes. I do know everyone is different and will experience medications and treatments in their own unique way. It could turn out to be the opposite of what you are expecting. Someone who has a large tumor may have an easy time of it, another person with a tumor 1/2 that size could end up struggling, you just never know. A second opinion would be a good idea. Best of luck to you and your mother with everything!

Welcome - sorry to hear about your mom.... I too do not know about size - but wanted to say there are a lot of people here who've been through chemo and rads and have some great advice. Read up on it - it's no walk in the park - but it is doable. Take care! And god bless

It is a large tumor but when you do the math, a 5x4x2 gives you 40 cubic cm for volume of the tumor. At 4.1x3x3 my BOT tumor volume was 37 cubic cm. The good news is that Stage IVA includes tumors that are locally advanced but surgically resectable and therefore salvageable.
I made the same decision your Mother made when I was given the exact same choices. It's important for you to know that cancers in different parts of the tongue are usually treated differently and BOT tumors especially ones as large as your Mother's and mine, require much more debilitating surgery than tumors on the front of the tongue. Accordingly most doctors try radiation and chemo FIRST for BOT tumors.
(When I first joined, I used to wonder why so many posters seemed to think that you should have surgery first until I learned that many tumors on the front of the tongue are better treated with surgery first and then rad and chemo)

I am very glad I did not have the surgery first even though the cancer did come back. Why? Because the radiation and chemo did make the tumor shrink and fade away to the point of CCR (complete clinical response). I was able to enjoy almost a year of eating and drinking and talking with just some complications. Since there had been PNI (perineural invasion), the tumor came back but it was now small enough to leave half of my tongue and do less damaging surgery.
So by choosing just rad and chemo, I got an extra year of semi normal and then the surgery was not as extensive as it would have been the first time, so I can still talk and do not have a trach.

Just my experience but it may give you and your Mother something to discuss with the doctor. A large tumor is not a death sentence.
Keep the Faith
Charm

PS/ I was also misdiagnosed as TMJ at first and the consensus was that my tumor had been growing for seven years.

I had BOT fairly large; Radical neck dissection, with 2 nodes pos(encapsulated)BOt resected with TORS, followed by Radiation and chem (cisplatin). Now clear (7 months out), but it seems that the radiaion was done too soon after surgery and now I have a benign lesion that will not heal. Cannot eat much of anything but ensure plus. Anyone else had this non healing throat pain issue and if so what do you do about it? I have appoint with Oral/Maxillofacial soon and have to depend on liquid pain med; plant glycerin and viscous lidocaine for pain. I want this to get better.

Sounds a lot like mine.........I went to ENT thinking I had a chronic sinus infection/problem or allergies. Then the whammy STAGE IV with lymphnode involvement. Mushroom shaped growing on a stalk away from tongue. I noticed a kept choking and having trouble swallowing. No wonder....so far down the doctors could not see it until looking with scope! I am now cancer free following TORS, Radiation and Cisplatin. So, you mom may have hope. Removed a very large part of tongue with TORS, still able to speak, swallow, but due to burn from radiation probably too soon after surgery, I have constant throat pain. I have a lesion/spot that has still not healed-7 months out and am looking for a remedy for that. Tell you Mom to hang tough.....

Farmer Brown, sorry you have been thru so much and still have some ongoing issues. When you have questions its best to begin your own new post so it doesnt take away from the original poster's topic. I do not want to stray away from another new members question. Sorry Brigboo!

Briefly, many patients including myself have benefitted from hyperbaric oxygen treatments (HBO). Its where you go into a clear glass chamber and breathe pressurized pure oxygen. It helps speed healing. Please make your own post if you need further info about HBO.


Brigboo, Im glad you have heard from Charm. His situation was similar to your mothers so it should help to ease your mind.

Hi Farmer Brown: I am currently dealing with base of tongue tumor, also lymph nodes both sides. I'm encouraged that after surgery you can speak and swallow. I'm investigating TORS also--where did you go?
Judy L