I am a 57 year old man living in Palm Springs area of California. I was DX 12/17/10 with SCC in the right lateral tongue. Started with a small lesion in 8/2007 that was DX benign after loop biopsy and although regularly brought to the attention of various physicians, dentists, etc. was not tested again until it rapidly became 3+cm . Scheduled for partial glossectomy with selective neck dissection at CCC on January 21, 2011. I found this forum and would appreciate any feedback, advice, etc. Also would like to connect with someone in similar stage of treatment.

Hi Craig. Welcome to OCF. There are several members who have had a similar diagnosis as you. Im sure they will post and answer any questions you may have. Will you be having radiation? The advice I would give you is eat everything you can now. Eating can be difficult for you after this type of procedure. Best of luck with everything!

Craig,

I, too, welcome you to OCF. This is a great bunch of people on these forums. I wish you well with your upcoming surgery. Do you have family or friends that can help you with recovery? Most likely you will be out of commission for a few weeks to a few months. The road is rough but you can do it. When anyone asks if they can help, take them up on their offers. Could be a simple as taking out your trash, walking and feeding your pets, picking up prescriptions, renting movies. Keep a list of contacts close by, ie, doctors, nurses, drug store, friends and family.

Eat, eat, eat everything you can now. Get a pads of paper and pens as you will most likely be unable to talk for a few weeks. It is very important to have one or two people who can be with you at your appointments and stay with you after you come home.

There is always someone on these boards who can give you support and answer questions. Please keep posting.

All my best-
Anita

Besides eating as much as possible, and lots of paper and pens, if possible, take a small recorder with you and tape what is said to you about everything. It's easy to forget as when they talk, your mind is travling around wondering about this crappy disease. Then when you are home away from the prssure of treatments, you can replay the tape and even then maybe write some of the info on paper. You will be drinking a lot of water too, which we all do, so stock upon a few cases unless your tap water is good ithout some of the chlorine and others tastes in it.

Buy a cordless razor too. Your neck and face will be sore enough withput any razor cuts to contend with. Probably will get the famous turkey neck too and that is rough to shave around.

Thanks for the responses. My wife and much of a number of other family members are signed up to help out. I also have some good friends and neighbors that want to be involved so I feel lucky there. Based on info to date, assuming no suprises in the Glossectomy or ND the thinking now is that radiation will not be necessary or will be saved for a tier 2 defense at a later date. I was DX with Non Hodgkin Lymphoma (Diffuse Large B Cell) in 1998 and beat that with CHOP chemo regimen so although the treatment routine will be different I have some familiarity with the process. I'm concerned about a couple of things:

1. Will I have to stay imobile during the week long hospital stay? The way it was explained to me is that I will have a trach and nasal feeding tube to avoid any contamination of the suturing, etc. Is it logical I could use a laptop or even watch TV during that time?
2. Do you think I can expect my voice to come back relatively quickly and will it be the "same"? I make my living talking, so to speak.

Thanks for the feedback

Craig, I add my welcome and I too am sure you'll get through this with flying colors.

I can't speak to some of your situation, but I did have a trache tube for a week or so and found that all it prevented me from doing was speaking. Dunno about nasal tube and how that would constrain you so I'll let someone knowledgeable advise you on that. The trache tube is a drag when it gets clogged up and has to be suctioned out.. boyoboy... but otherwise you get used to it quickly. There are also obviously a lot of other issues involved with the ND, but you'll be at a CCC so the docs and nurses will really know their stuff! (I see you're in Palm Springs... are you going to City of Hope, or maybe UCLA or USC?)

Keep us posted and ask any questions you can think of here.

Good luck, we'll be thinking of you on the 21st!
david2

I was in the hospital for exactly a week after my neck dissection and removal of the tumor on the left lateral side of my tongue. The first 2 days I could barely get off the bed to pee but watching tv was pretty easy because that was all I wanted to do. Days 4-7 all I did was listen to my cd player and again watch a lot of tv as well as walk around finally. They had me hooked to a nasal feeding tube that was a super pain in the ass because it kept getting kinked in my stomache in the middle of the night and the machine would beep sooooo loud! But they took me off of it around days 6 and I was on a puree diet, needless to say I was back in the E.R. just 48 hrs or so later because I blew a blood vessel in my tongue but thats another story lol. But besides the smell and tube getting kinked it wasnt so bad, I am living on a PEG tube at the moment and actually prefer that over the nasal tube anyday. But I had radiation and chemo, it took its toll and caused me to go with a PEG. Hopefully will be eating enough soon to get it removed next month, but sounds like your surgery is exactly as mine was. So have family bring your entertainment up there for you as well as comfy pillows. I hated the hospital pillows!!!

Your Friend,
Nathan

Craig,
Squamous cell carcinoma on the ventral surface of my tongue was my disease. Without going into all my treatments (you can see them posted under IMRT in 3 weeks in this section) I would say that you apparently are in the hospital for a longer time than I was; I did not have a trach or anything. I would say it might take you a while to recover from a week of immobility, but they will almost certainly have you up walking around the hospital a bit. I would think they would have physical therapy folks pay you a call. I had a speech therapist as well. Both were quite helpful.

In regards to your voice: I teach school music, and love to teach voice to my students. It is my vanity that I can sing the SSB at games with the crowd and get compliments or visit a church with my family and get the same. I don't get a lot of other compliments in life, so you hate to lose what you have! However my health has become more important to me that that. I had a discussion with the medical oncologist today who is going to administer the chemo to me about voice. Both she and the radiation oncologist told me they doubted sincerely that it would affect my voice that much. The medical oncologist told me she had a radio announcer as a patient, and he is back to his job as a radio announcer and you can't tell a thing.

Now I don't know how much tongue you are losing. I did not lose a lot, and my speech is a lot better this week (3 weeks ago second tongue surgery). I notice that I have lost some strength in my breathing apparatus, which will be regained, as once you have the technique it'll come back. I am fairly certain the voice is still there.

I think you will need to relearn how to use your tongue. But please realize, as I had to, that you've got to get rid of your cancer, or all else is in peril as well, including your voice. I know the human tendency is to want to avoid anything painful, difficult, that threatens what we are.

I would be happy to help you further if you want it.
Anne

Craig,

Welcome to the forum nobody wants to be a member of! I too had lymphoma, T-cell, in 1991 and was treated with high dose CHOP and Neupogen in a Phase 1 study. Our oral cancer diagnoses are very similar as well... hmmm...

At any rate, I was in the hospital for 10 days if I recall, the first two or three I was sedated in ICU but as soon as I was awake they were getting me on my feet. Didn't have a trach but did have the nasal tube and mostly, it was just annoying but it didn't get in my way.

Your voice will probably be fine but your enunciation will be dependent on how much and what parts of your tongue have to be removed, I think.

Hope this helps.

- Margaret