Hi This is Ken posting under my wife's account. I am three months out from IMRT radiation for stage 4 SCC BOT. The treatment unfortunately did not take care of the cancer and now I am looking at a full glossectomy and laryngectomy. The Doctor says that he may be able to save my voice box so I may be able to talk a bit, but won't know for sure until he gets in there. Can some one tell me what the recovery and rehabilitation will be like. For instance I like to go for walks (2 or 3 miles) when will I be able to do that? Thank you all for your help and support.

Hello Ken-
I'm Lisa from Montana. I just turned 41 and had a total glossectomy on April 19th due to advancing tongue cancer. At first I was told to expect a laryngectomy as well but as it turns out they were able to save my voice. I had 4 teeth removed because the cancer was in the floor of my mouth which was unexpected and had a few stupid infections to get past but:
I was home by the middle of may, just 23 days or so after I left home for surgery. I was able to resume fairly normal physical activity within aweek or so of surgery (once I left my hospital floor for more than two hours to walk and got paged which was embarassing!) I was able to go to Mexico for a week long vacation a month after returning home and even went parasailing on my 41st birthday!
I am actively involved in speech therapy and have been told that I am 100% understandable. I can even talk on the phone legibly. I recently had sweet potatoes which I love and am able to eat soups or thinned potatoes as i choose to.
Feel free to contact me if you have any questions. There are a few great people on this forum who have been there for me and I would be happy to share my journey with you. I am so incredibly pleased for how things have gone for me, I couldnt have expected that things would be this good! I wish you the very best and keep us all posted ok?

Hi Ken - I am so sorry to hear that the IMRT did not do the job it was supposed to.
Recovery is different for everyone - I know you know that. You might be able to predict how you'll recover based on how you've recovered thus far. If you're able to go for walks and have worked your way back to activity since your IMRT then that's a good indication of how you'll recover after surgery.

The thing about radiation is that it's a long slow insult to the body - it takes a good while to recover. Surgery is quick and so the body isn't typically "down" for too long and so recovery may be more rapid. You'll feel like hell for a short time and likely get better at a good pace once you're body gets over the initial trauma from the surgery - the body is an amazing thing!

So, your ability to walk may come faster than your ability to talk. I'm a speech therapist and can tell you that the talking will likely be a big problem for the first little while. You might feel better prepared if you go see a speech therapist now before your surgery - he/she will be able to give a fairly good idea of what to expect - even better, they'll already know you so they can make sure to see you within hours after your surgery - especially since you may not know until you're done whether or not the surgeon could spare your larynx.

I'm sure you know this as well, but I want you to be prepared - you will not be able to talk after your surgery - have a pen and paper system ready to go so you can communicate. You CAN regain your speech skills after both procedures but it'll take a while, it'll hurt, it'll be hard and it will be frustrating. If you lose your larynx you can learn how to produce voice (after you've healed) by using other muscles in your throat - so don't think that losing your larynx means you'll never talk again -you won't produce voice the same way but there are ways to compensate-in fact the speech therapist who helped me after my surgery had a laryngectomy herself- most people wouldn't even have been able to tell! There is a lot that you can do as you recover to rehabilitate - as a therapist I've had to push patients to participate in treatment - before this it made me wonder why I had to push them - didn't they want to get better? So, now that I've had my turn in the hospital bed, I can tell you that there are some days you might not want to get better - getting better was the hardest thing I ever did - and even now I can't beleive I did it. Your path will be a challenging one - but you can get better!
Hang in there as best you can! That's all you can do!

Hi Lisa,
Thank you for the reply. Is there anything that I should do to prepare myself for the surgery. I know that I need to talk to the speech therapist ahead of time and that I need to work out some method of communication for when I am in the hospital (I'm thinking of purchasing an IPAD). What else should I be thinking about and preparing myself for. Thanks Again for your help.
Ken

ipad would be a great purchase! or just something to write on where you can do it fast but the ipad could be really great.

Sent you a PM.

KATE

Hi Ken - An iPad would really be a good idea. When my son used was his laptop. He just typed on a Word file (in caps, really big letters, no punctuation) so that the people around him could see what he was saying as he typed. For the people facing him in his hospital room, he would turn the laptop around to show them. But an iPad would definitely be easier to handle or carry around.

Hey there Ken - good luck with the surgery! You'll do fine. Recovery isn't easy it's a long road, but it's been well traveled by a lot of us here and we're all willing to help and listen!
An iPad is great I brought mine. It's fun for watching movies, and playing games and emailing and updating friends - Facebook etc...so it's a great tool. Typing on it is something you have to get used to though!!! There is an ap you. Can dl that let's you write if typing is taking too long. Plus you can dl a text ap as well.

Take care... Hopefully you'll be back and feeling good enough to post about your journey very soon!

I bought Ron a small dry erase board. I had to buy him another one, he used the first one so much it wouldn't erase very well. But they are under 5 bux @ Walmart. It's easier to use than paper I think and there is a spot to clip the pen to on the board so it won't get lost.

We are in a holding pattern. They did a PET scan and there are some nodes around his windpipe that came up. The thorasic surgeon said under normal circumstances he wouldn't biopsy at this time since they are still small but obviously they don't want to go ahead with the glossectomy if it has spread. Ken is having the biopsy on Tues. and we should get the results that day. If they are ok he will have surgery the following week.

Cheryl - how did you keep your iPad secure while in the hospital? Ken is concern when he is sleeping, etc. that someone will walk away with it.

Thanks!

I slept with it!!! Seriously had a cover on it tucked it under the edge of my pillow and left it attached to it's power outlet. No one bothered me. If I left I took it with me and if I was in the bathroom I hid it in the bottom of my bag.

I'm sorry you have to wait... If the nodes are positive they can go in and take them when they do the surgery, no?

Good luck!! My husband brought it to me the day after surgery. fingers crossed he just has an infection of some sort and there's no cancer in his nodes!!!