Hi,
I was diagnosed with squamous cell carcinoma of my tongue in December 2015. I had a partial glossectomy (about 1/4) in January 2016. My surgeon was not happy with the margins and now I scheduled for a hemiglossectomy (with lymph node removal, tracheostomy, feeding tube and radial forearm free flap), in April 2016. I have not been told a whole lot about what exactly is going to be done or how long healing time will be or speech deficits. I hope to gain knowledge from people here who have gone through this.

Welcome to OCF! We will help you with info and support. Read and learn about your illness and everything that goes along with it. This will help you to become a strong advocate for yourself. We have been where you are after major life altering surgeries, we completely understand what you are going thru.

As far as your speech goes, I suggest finding a speech pathologist to start seeing. They will help you tremendously with your speech and also how to manage eating with the changes in your mouth. The earlier you begin working with someone the better end results you will have.

Best wishes with your continued recovery.

Hi, Ange

I have been through that op and for the similar reasons. It's very big surgery and the trache is highly irritating but it's also a successful procedure. The forearm flap works quite well because it is moved by the remaining tongue. Over time it comes to resemble normal oral tissue more and more. When I had a recurrence, it was not on my tongue but in my cheek. That's because I'm one of a small percentage who get new primaries.

Speech should be okay although you might have a slight change of accent. Eating will be slightly less difficult but you should have no major problems. It just takes time for everything to heal and the swelling to go down.

Best wishes.

Hi Ange,

I had my subtotal glossectomy done at VGH in Vancouver. The surgery included removal of a substantial part of my tongue, a flap from my wrist, skin graft from the thigh (to fill the hole left from removing the flesh from the wrist) & partial neck dissection. I had the tracheostomy and the nasal feeding tube. The trach sucks big time, but you'll get through it. Check my first post out for the whole story if you want more detail.

Everyone is a little bit different because their sites are in different locations, shapes & sizes, so what you go through will be unlikely to be exactly the same as what I or anyone else went through.

In my case, I was in the hospital for about 16 days. I was able to eat without supplements from the NG tube after about two weeks. Another couple of weeks at home and I was starting to be able to eat most everything again. Six weeks after the surgery, they began radiation treatments & eventually I had to go back on the (mostly) liquid diet for awhile. Then it improved again. Didn't take me long to get back on my feet, back in a dragonboat and hiking. I even did the West Coast Trail about seven months post surgery.

My speech is somewhat affected. Problems are most noticeable in my case when I need to spell out letters (e.g. my D's sound like G's), or when I need to say words with double letters. I can eat almost everything again, although sometimes I have trouble with things like sushi - I need to bite it in half now. I have a nice scar on my wrist, but everyone says chicks dig scars. I feel pretty fortunate if those are the worst things I have to worry about now.

It is reassuring to hear about other people's recoveries. To know that although it will be a tough couple or more weeks, that healing does happen and I will get through it. The unknown makes me a bit anxious, and at the same time, the wait time until surgery seems to drag on.
Thanks for your stories and support!

Hello! I am newly diagnosed as well. I have surgery scheduled on 4/14/16. Partial glossectomy. I am super nervous but knowing that others have gone through what I'm going through is slightly comforting. Not that I wish this upon anyone. But it's nice to be able to talk to someone. If you need an ear, or eyes to read (lol) you can contact me! I hope all goes well and I wish you the best!

Thanks Ang! You too. I am a bit freaked out, but it has to be done! The alternative is not an option. It is nice to have someone to talk with who is going through the same thing at the same time and share experiences. Wishing you all the best and tons of positive thoughts on your big day!

I agree! Let's support each other! I hope the best for yoy. After surgery I am going green. I wonder if anyone has researched hollistic remedies of alkalining your body to defeat cancer cells. There's so much research ahead of me! Let me know what you think! Surgery is in 3 days, wish me luck!

ANG0512
There is no evidence that any of these holistic remedies you read about on the internet actually work, and certainly the idea of alkalining the body.... no matter what you do your body will through its own systems, realign itself to its normal equilibriums. If you are going to research these things, the credibility of the web sites that you are visiting is paramount. There are more old wives tales and misinformation out there then you can count. Don't muck up sound nutrition to try and change something that is more often dictated by the genes your grandparents gave you than anything that you can consume. Learning good nutrition in general and with exercise incorporated will be more beneficial than some unproven idea that does not hold scientific water. I say this with all respect, and only wish you to not harm yourself chasing things that have no evidence of efficacy.

I hope all goes well for both Ange's on your surgery days. The biggest remaining effect on my speech is just if I talk a lot, I feel that my speech doesn't sound as good as when I don't talk so much. The nerves on the right side of my tongue starting feeling needles and pins sort of.
Other than that, Alpaca was right about the changes in accent. My heavy Brooklyn accent occasionally sounds sort of Boston. Listen, it could always be worse. It could sound New Jersey, right? Denise

Thanks Denise!
I am finding the same thing now with my tongue (3 months post surgery #1). I sound funny to myself and my tongue feels tingly and also a bit thick when I talk a lot. I kind of feel bad that some of the feeling is starting to come back and now more of it will be gone! Oh well. at least I know a bit more of what to expect with the next go round! And I hope I don't get a New York accent.......it would sound funny up here in British Columbia!

The feeling will come back once again. I actually feel like the needles and pins thing is a bit annoying sometimes. I am just so lucky to be able to eat real food and all. I feel so blessed every time I have a meal. It makes you feel so grateful. And that's a good thing. Denise