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.