Hi All,
I was diagnosed in early 2014 with microscopic tongue cancer. The strange part is that I was complaining about tongue pain since 2004. I had my first biopsy in 2004 and it came back as irritated skin. I was told to stay away from mints. The pain continued and I went to several oral surgeons who would monitor it and provided steroids for the pain. I was told that because I was not a smoker I had nothing to worry about and that it was viral and I needed to get use to the pain.

Finally, in 2014 I was pointed in the right direction. Thanks to the help of my husband and his dentist. I had several partial glossectomys on my tongue, external radiation and brachytherapy, all in 2014. Speech is very important to me because I am a elementary school teacher. I have just finally gained my confidence back and my speech is probably about at 90% what it use to be.

Every month I go for my month checkup and this month my doctor felt something different. He took a biopsy and it came back positive for cancer and it's also in the nerve, again.

I'm being told I need to take a more aggressive approach (which I thought brachytherapy was aggressive enough) and remove more of my tongue. This means I would need reconstruction. My priority is to get healthy and remove the cancer but I also want to be able to go back to work. Also, I may need more radiation with chemo this time around.

I'm trying to find other people who have had tongue reconstruction and get an idea of what to expect. How long will it take my speech to come back? Will I be able to speak? Go back to work? Has anyone had cancer in their nerves on their tongue? What if i go through this dramatic surgery and it comes back?

Thank you for taking the time to read this post.

Oh dear, your story sounds similar to mine: the years of "irritation", pain, then a diagnosis and small surgery followed by the need for reconstruction. (I didn't have radiation the first time round, however.) I was still teaching when I had my first surgery, went back full-time then did some part time teaching after the hemiglossectomy. I could speak clearly, still can, but it took a while for my tongue to warm up in the morning and it was harder to conduct the normal processes of teaching like reading aloud. I read the entire "Of Mice and Men" to one class though:) By that time I was in my 60s and near retirement.

In the week after surgery you will probably have a tracheotomy which means no talking for about a week. After that you can practise the tricky consonants with the speech therapist. From my experience that fine tunes the speech. The basic speech function is back as soon as the trach is out.

I haven't had nerve involvement but other people here will respond to that. It sounds as if your doctor is really onto it and has caught it as soon as possible. I wish you well. This is a shock to the system and I hope you get lots of useful info here.

Thank you Alpaca for writing back. My doctors decided that because my cancer was microscopic it would respond well to radiation. The brachytherapy, which is a temporary seed implant of radiation was suppose to be the "icing on the cake". I experienced having a tracheotomy during that procedure and had to learn to clean the trach on my own due to being isolated for several days. I had all my radiation in June/July and went back to teaching in September for the 2014-2015 school year. I am very fortunate to work in a classroom that requires two teachers and a maximum of 20 students, I had the most supportive co-teacher and amazing and loving students. I truly believe that because I was talking/reading aloud each day my speech improved more and more throughout
the year.

It seems that I will now be having a hemiglossectomy because the doctors will also be using skin from my forearm to reconstruct my tongue. I'm afraid because it's in the nerve it has traveled more than the eye can detect. My oral surgeon was able to show me about how much will be removed but as I have learned from past surgeries you don't know exactly until they're actually working on your tongue. My MRI has shown that it has grown now to about 2cm. I'm hoping that the external radiation/brachy wasn't for nothing and has at least removed the microscopic cancer.

Alpaca, it makes me feel more confident knowing you were able to go back to work after having the hemiglossectomy. My most important concern right now is getting rid of the cancer, but my heart is in the classroom. Im confident in my oral surgeon/reconstructive surgeon to give me a tongue to work with. I just hope that this is the last time I have to go through surgery and ALL of the cancer is removed. I wish you all the best as well.

If anyone else has had or heard of someone with cancer in their nerve or has had a hemiglossectomy I would be really interested in hearing your or their story.

I have a different cancer than yours, but I had Perineural Invasion, PNI, found in the biopsies of several surgeries I had for recurrences in my cervical neck, and had further chemoradiation for it. The biology of PNI and prognostics are not fully understood or its impact on survival known, but is considered a negative prognostic feature, and a route which cancer can spread along the nerves.

I hope this helps, and good luck.

Thank you PaulB. That's what I have been reading and I'm very concerned about it spreading all over the tongue.

Wish you all the best.

Maybe they can do reirridation with Proton Therapy, which is very precise, and spares damage to nearby structures. I had it in 2013 along with Carboplatin.

My cancer and story sounds the same as yours except when we finally found the cancer it was fairly large so instead of messing around they did the hemiglossectomy and then rads. You need to have a top notch reconstructive surgeon. It took me probably 6 weeks to fully recover. Then Rads... In total my recovery took probably 6 months to speak well. And about 2 years for almost perfect speech. This I contribute to my surgeon. I have a small lisp when I'm tired still. Hope this helps, hugs

Paul,
That is what my oncologist recommended with chemo to enhance the radiation of the proton therapy. I was torn between doing the surgery or just trying the protons with chemo but all doctors recommended that surgery is the best option, especially since the R didn't work the first time. I'm hoping that the hemiglossectomy will remove it all and it will not be needed. I have a feeling that it will be recommended anyway which means I will have to travel to NJ instead of staying in NYC. I don't mind the travel but I am concerned about the effects of having radiation for a second time. I am told that my jaw is very fragile now after having the external and internal radiation. What is carboplatin? Also, It's very difficult to pinpoint the exact location of the cancer because it's in the nerve and previously microscopic. I won't know if I still have microscopic cancer until after my August 5th surgery. Please keep your fingers cross that my margins will for once come back clear.

CherylD,
I'm so happy that you are speaking clearly now. That does help a lot. Sometimes I would feel like Id have to fight to get a word in with my colleagues because it takes me longer to articulate what I want to say. I'm usually an extremely fast talker, living in NYC everyone is on the go and talks 100mph : ). I just finally got my confidence back and now I'm going to have to go through it all again but in a more extreme circumstance.
It makes me feel more confident going into this surgery knowing how you recovered and are able to communicate with others. I am also very confident in my surgeons and I'm trying to hope that this Cancer doesn't try to continue to outsmart them. Speaking/Eating (I know for everyone ) is a huge deal to me and I really want to return to the classroom.

I will be following your story to compare notes. Sending positive energy your way and hugs as well!

Keep - I'm an actor so I hear you completely - it took me a long time to feel comfortable enough to go into the audition room again and not be self conscious. But I'm good - I'm booking stuff etc... :)Sooo.... It does happen just be patient and make sure your surgeons are top notch. It really does make a difference.

I pray all is well and you'll be talking clearly iN no time at all. We are all so fortunate to have found this support group.

Cheryld-
Thanks for sharing. I'm very confident in my surgeons. How long before you were able to talk comfortably and started trying to eat?

Corlis-
I agree, we are very fortunate to have each other. Unfortunate to meet in such a way. Thank you for your prayers. I wish you all the best.

Cheryl- That helps me stay optimistic. How long before you started feeling comfortable with your speech again? My tongue is very bulky right now and needs to settle. My reconstructive surgeon seems to really like his work and thinks it looks great. That makes me feel better. I can talk and have conversations but it sounds very distorted to me. I guess I have to be more patient.

Hi sorry - geez it's been a busy summer sorry i didn't get back to you before now

After surgery I was eating at day 8 - omelette- mashed potatoes soft veggies.
I went away on day 17 and was able to survive in mexico at the buffet of a resort. Pastas, soft pancakes, eggs - I did fine. I would place the food on my good side and wash it down with a drink of water.

during radiation

I couldn't use my tube, so I drank my nutrition all the way through my treatment - NOT fun but doable.

Two weeks after treatment I had my tube removed. I was still taking in boost and protein shakes for the most part. Probably another week or two after that I started being able to swallow without if feeling like acid. Then I upped what I was eating to soft stuff and soups but nothing acidic or spice. From that point on it was a long haul just trying to regain taste and swallow (dry bulky things still bother me - everything else went down with a gulp of water or almond milk!)

hugs and hope you're doing well.