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

Welcome Craig!
I think everyone has already given you great advice. Eat plently beforehand! An erasable writting board came in handy for me when I couldn't speak because of the trache.

I also had the nasal tube for about 2 weeks and I ate, drank, took showers and could speak just fine but I didn't have any surgery to complicate things. Mine was added during my radiation.

My surgery is scheduled at Loma Linda University Med. Center which convened a tumor board to review my case (concurred with the head/neck surgeon's recommendations) and although it is a "teaching" hospital I'm not sure it meets the technical definition of a CCC - however, I am pleased to be treated there. I see that most on this forum have had RAD however my doc seems to downplay that possibility and that confuses me somewhat. The size of the excision (glossectomy) will most probably be about 5cm diameter in a round or oval shape and will require some reconstruction with the tissue from either under my chin or forearm.

FYI,

CCC's

http://www.oralcancerfoundation.org/resources/cancer_centers.htm

BEST CANCER HOSPITALS

http://health.usnews.com/health/best-hospitals/cancer-hospital-rankings/

Hi ! Sorry to hear about your diagnosis - but this is a great place for support and information. I am likely in the same stage of treatment as you are - though I may be a week or two behind you in surgery - they put me in for it yesterday but I don't have my dates yet! My tumor is on the left side of my tongue and a stage II with no metastasies to my nodes or glands ( as far as they can tell on the scans ) my discussion with the doctors yesterday was pretty much what I expected - so there were no real surprises - I did clarify a few things but have to go back to see my surgeon next week as he was called away on a family emergency and I only got to see his fellow. My best advice is educate yourself. Know exactly what you are having done, learn the lingo, and ask questions - have someone with you as a second set of ears and also, as they may be able to come up with questions you may not think of. Knowledge is power - demystifying your disease and treatment prepares you mentally for what you are going to face and for me at least, that makes it easier. Also expect and prepared for the unexpected that way if it doesn't happen it's a plus - but if it does - you're prepared. My dr. Said likely I would be in 10-14 days, and that I might have a trach put in depending on how my airway does. - radiation will be determined after the pathology comes back. This is all pretty much what I had read. I know the first few days will be hard - but being a veg is okay - watching tv or reading if you have the energy is good. But I imagine they will want you up and moving as soon as possible as it promotes normalcy, circulation, and ultimately recovery. Not looking forward to the NG tube though - ack! Good luck!

IMO Loma Linda is a very good institution and the only one in California offering Proton Beam Therapy (PBT). Their survival rate is "as expected" - see the last link.

A link to their cancer center newsletter about their staff:

http://lomalindahealth.org/media/medical-center/departments/cancer/pdfs/may-june-cancer-connect.pdf

A list of their current clinical trials:

http://lomalindahealth.org/media/medical-center/departments/cancer/pdfs/adult-studies-09-01-10.pdf


2008 ranking for EN&T

http://lomalindahealth.org/news/2008/07/11/llumc-named-one-of-america-s-best-hospitals.html


California institution H&N rankings:

http://health.usnews.com/best-hospi...;city=City&state=CA&zip=ZIP+Code

You may have to copy and paste this link to your browser to open it.

For those of you out of state there is also a nationwide ranking:

http://health.usnews.com/best-hospitals/rankings/cancer?page=1

Sorry to hear about ur dx but glad you found this group.

I was diagnosed March 25th 2010 with stage 3 SCC right lateral tongue with possible lymph node involvement.

I had a hemiglossectomy, so they removed the whole right half of my tongue. Also had a radical neck dissection where they removed 40 lymph nodes, 1 came back positive, and had a "free-flap" transplant on skin and blood vessels from my left wrist/forearm to recreate my tongue. Plus I had a trach and ng tube, and catheter. All was done on april 13th 2010.

My surgery went for 10 hours, I didn't start waking up till maybe 27 hours after surgery and felt like a train hit me. I didn't remember i had surgery, didn't know where i was or anything. But it all came back pretty quick, like 10 mins of being awake. They wouldn't let me get out of bed the first 2 days, which is why i had the catheter in, otherwise they have you use a bedpan, which i never did, but some do.

I was in the hospital for 8 days. I was able to watch tv and use my laptop in every room i was in, as long as i was breathing ok. I was on ventilator for first 3 days, then started working off to the trach dome on the 3rd day, and 2 days before i left i was breathing pretty well with out trach dome (a little dome shaped thing that sits over trach and almost like a humidifier, pushing out warm or cold moist air, mine was always warm).

They plugged my trach day 5 and i was able to talk, but still sounded kinda garbled cuz my tongue was still pretty swollen. About a week after surgery I was talking almost as well as I am now at 6 months post treatment. Only issues i have with talking is can't say l's or r's very well and sometimes people can't understand me when i say certain things, but you shouldn't have that big of a problem cuz you are only having a partial glossectomy, which is usually about 1/4 on one side or so.

I also had to go through radiation 7 weeks after surgery due to lymph node involvement, perineural invasion and how deep in my tongue it went.

But by the time my radiation came, i was eating pretty good with no real taste issues other then i couldn't taste on the right side, because there weren't any taste buds, . Radiation is what really messes up your taste, but surgery not so bad.

I would say make sure you or have a family member bring to you after surgery a bigish dry erase board, or a notebook and pen, or if you know sign language, even just the alphabet, someone who knows and can translate. I taught my family alphabet in sign language when i was in the hospital, but they gave me this little dry erase board, and i was constantly using that bad boy.

Make sure they are doing what they are supposed to. When i say this i mean, washing hands, changing gloves, using foam or hand sanitizer. They didn't always do that with me, and i wasn't stubborn enough, and i got an infection in my neck dissection because they weren't being sterile, and they weren't cleaning it properly.

Not trying to scare you, just letting you know some of the things i wish i knew before surgery.

I would suggest you have a family member maybe bring you laptop to you maybe no first day after surgery, but maybe second day.

Not everyone is the same, some bounce back sooner or later then others. but for me, laptop and tv became my best friends while i was in the hospital.

If you have any questions, feel free to ask. I will keep you in my thoughts and prayers, and hope for a quick and as full as can be recovery from surgery!!

One more thing, and this was a big thing for me. Maybe talk to a family member who you know can get things done. An advocate is anyone you want it to be, that can get you your needs/requests, if the hospital staff doesn't do it for you when you ask/write.

Sometimes, when the hospital is chaos, and you request something, a nurse or doctor may say sure, i will do that, but then 30 mins go by and still nothing, because they are so busy, they forget, or they just out right brush you off because they don't think you need it. This is when you let your advocate know, and they go and make sure the hospital staff knows it's urgency or importance and that it gets done. If that still doesn't work, talk to your doctor when they come in to see you, or your advocate can too.

Not saying it happens everywhere, but i was kind of brushed off when i couldn't talk, and felt like some staff just walked all over me because I couldn't communicate my needs. Others would also just say i was having an anxiety attack. All that ended when i got my brother to advocate for me.

Hopefully you won't need it, but i would have someone just in case.

All great information and very much appreciated. I learned during my treatment for NH Lymphoma in 1998 that knowledge is power and FEAR (False Expectations Appearing Real) is the result of a lack of education about that which is going to take place. Thank you all and I will keep you posted as best I can.

Craig,
You're right on target about knowledge being power. Our experiences are all somewhat different, we have different views, etc, but I think you'll see this is a pro-active bunch, which I think is good.

Sounds like you are in good hands, and have a good attitude.

Best,
Anne O.

Craig, I've heard wonderful things about Loma Linda over the years. You're in excellent hands.

D2

Craig,
Sorry you are are here. Glad you found us. Eat as much as you can now. Good luck on your surgery.

Curious about conversations with the doctors and then the reality relating to RT: I am having my Partial Glossectomy and Selective ND on Friday with similar presentation to many I have seen in these forums and the possibility of RT seems to be remote according to the discussions with my care providers to date. From what I understand it seems like most challenges of treatment come from the RT and collateral damage associated with same and I am hoping to dodge that bullet. Any thoughts?

Hi,
So sorry you have to go through this..my surgery was April 2010. The best advice i can give you is to have someone who can be your advocate for at least the first 2 weeks while in hospital...get some one to bring you and MP3 player with your favorite, soothing music...it will truly help get through those "moments"..are they doing a graft from your arm? and then your thigh? At this stage, I only wish i would have pictures taken from the beginning so i could see the improvement...be strong knowing that you are not alone..you can do this !!!!
Karen

Craig

Since you posted the exact same question about radiation TX in two separate threads, I've reconsidered my initial decision not to reply. I held back because we all try to be very positive and supportive here at OCF, and my experience was exactly the opposite of your understanding. While radiation was "challenging", all the real "damage" was done to me by my partial glossectomy and selective neck dissection. After my 40 IMRT TX and 8 Erbitux, I was back to eating normally, talking normally, and even did a triumphant "victory" trip to Rome & Venice.
The surgeries however devastated me. Plus my hospital stay of 12 days rivalled Dr. Brook's horror story.
I want to emphasize that I would do the surgeries all over again as that was the only way to stay alive.
I'm not a doctor and I'm in no position to evaluate your doctor's decision to treat your cancer with surgery first instead of radiation or chemotherapy. My understanding is the polar opposite of yours: I had thought radiation and chemo were now the first choices because of all the life long and permanent complications of surgery. However, my tumor was at the base of my tongue. It could very well be that your tumor is much more accessible and that you will sail through with flying colors and minimal complications. You asked about the "reality" of RT, and in my minds, it's the lesser of two evils. Since you asked for thoughts, those are mine.
Best Wishes
Charm

Charm: Please excuse me if I am being redundant as I am still somewhat unfamiliar about how to best use the forum and since I have only a day and a half until my surgery I have some sense of urgency. Thanks for the feedback. The ND is being done as a precautionary measure is my understanding (plus I have a history or Lymphoma Dx 1998, clear since). I guess reality is that I won't know about the probability of the RT until the pathology is completed on the nodes and yes, it seems everyone's experience is different. Since I am being treated at a teaching hospital there has been a panel of all possible potential care providers that have reviewed my case and concurred with the surgery first option. The lesion is on the right side, mid-tongue so should be relatively accessible. I won't have to wait much longer as the surgery is Friday. I'll update you all when the facts are known.

I had the opposite reactions from Charm. If all I had to have was the surgery, I could have been back to work in a month, but then, my tumor was in the left side of my tongue. The radiation and chemo really did a number on me, however. I am still having issues with eating. But, of course, everybody is different.

Craig - best of luck with your surgery, I'm sure you'll come through with flying colors.

Clearly each one of us is unique in both physiology and emotional fortitude, and therefore reactions to treatment are like the proverbial differences among snowflakes. But I think, and this is my opinion, that you'd find most of us who've had radiation and surgery have found the former to be more taxing. Which is a lot for me to report given that my surgery involved a serious complication. (and of course mine was not a glossectomy but only a RND)

No question, RT is a bitch. But even so... I've read here about people going through it with relative ease. If you do end up needing it I'm sure your docs and nurses will help you to make it as smooth as possible. And there will be lots of people here, myself included, who'll be part of your cyber-team.

I'll be thinking of you Friday.

David 2

Craig

Not a problem. From what I've read as well as the posts here on OCF, there is a major difference between surgery on the base of the tongue and the front two thirds with your surgery having very good results with less complications. Here's wishing you an excellent pathology report showing no neural involvement with totally clear margins.
Charm

PS. The Mayo clinic website says that usually cancers on your portion of the tongue are treated with surgery first while base of tongue cancers are treated with radiation first.
So it sounds like you are all set to beat this cancer

Hi Craig,
Welcome to OCF! I just wanted to put in a few recommendations for helpful things after surgery. Try and work out a schedule for family members to be with you during your hospital stay. Also get a dry erase board for when you need to communicate when someone isn't around. Your goin to be sore from surgery and sound like you ate 10 packs of gum so doing these things would be great. Also chapstick!! That was my sisters BFF for a few days. Cheap wash clothes from a dollar store. You drool due to the swelling and using your blanket and sheets really isn't a good thing. my sister brought her laptop and had netflix and watched all her favorite movies. I can't think of anything else off the top of my head. But tomorrow eat your most favorite dinner in the world. I will be thinking of u on Friday. Good Luck!!

For me, radiation was harder to get over. I am young and bounced back pretty quick from surgery. It took me maybe a month to bounce back from surgery. It was a tough month, but it went pretty quick. Radiation, I am now 6 months out and still feeling it's affects. Dry mouth, skin issues, still have thick mucous buildup when i first wake up, and when i exercise, also have taste issues that i didn't have after surgery but before radiation, and I can't stand to eat some of what used to be my favorite foods.

Everything is different for every person. For me, radiation did more damage then surgery, but it's different for everyone. I wish we had the option or radiation/chemo first, but for most of us that have issues with the front of the tongue, they almost always go with surgery first. Actually, i haven't heard of one person so far to be offered chemo/radiation before surgery for anything so far except for base of tongue when it comes to oral cancer.

I will keep you in my thoughts as I think i read that ur surgery is coming up quick!
I didn't need washcloths for drool, cuz they gave me a suction hose with a "red robbin" on the end. the red robbin is a soft tube that almost looks like a straw, but it's sealed at one end, and has a whole or 2 a little ways up from the sealed end. It was soft and I was able to keep the drool issue controlled with it, plus when i got anxious, i would bite on it, lol.

Gee - looking back to my first post on this thread and now I am home post op I feel like I have been able to accomplish this thus far only with the help and advice from you all. Waiting for pathology on ND nodes removed this coming Tuesday and trying to heal from the mob necktie are my challenges for the moment. Have not been able to figure out how to sleep effectively to avoid damage to the incision (have been using a La-Z-Boy). NG tube gave me lots of trouble so I demonstrated the ability to swallow and they took it out before I went home. I was choking on it regularly. Thanks all - I'll keep you posted.