Katy:
A CCC is a comprehensive cancer center; there are only about 20 of them in all the U.S. I don't know if Nashville has one, but Christine is very good about posting the link that shows where all of them are. Their main advantage is they are truly the forefront of treatment knowledge about cancer; it's where you will get the best care as all their doctors are the best in the business.

Edit: When I started writing this post, Christine hadn't already answered this question. Sorry for the duplication.

To make a signature click on My Stuff above your first post and select Edit Profile, go down to Signature and then start typing. Read some of our signatures first so you will have an idea of what you want to say in yours. I have changed my signature about once a month as I went through treatment.

Right now I would post all my questions in this one thread; don't go bouncing all over the forum asking questions in multiple places. If you put everything here we all get to know you better and faster and can respond with the most appropriate information. A good time to leave this Introduce Yourself forum is when you start rads and or chemo, then start a thread in the Currently in Treatment forum. Look in my signature and see how I did it. Mine is not the only way of course.

I understand you think you want rads and chemo right now, as from what you've read that sounds like the correct way to go. If your care team uses a tumor board approach, then they form a panel usually consisting of surgeon, ENT, radiation oncologist, medical oncologist (chemo) and anybody else they think is needed. They all get together, discuss the particulars of your case and decide on a course of treatment. I don't know what they will decide, but if they decide it's rads only, don't get all upset and start second guessing them. Instead, trust your doctors, they know a LOT more than we do. They know what is best for your particular diagnosis. Many of our members have pretty strong opinions about what they think is the correct treatment for a given diagnosis. It happened to me, many on the forum thought I should also be getting chemo, but my tumor panel said rads only. In the end I had to just decide if I trusted my doctors ... I did.

Now, as for your nutrition. If you are a slender, tiny little thing and have already started losing weight then this is going to be tough on you. I was a plump little dumpling before rads began, so I had lots of extra I could afford to lose. The general rule is if you lose 10% of your body weight, then they will be wanting you to go on a PEG feeding tube. None of us want them (and I didn't need one), but getting malnourished because you are not eating enough and losing too much weight WILL put you in the hospital, and that's far worse than the feeding tube. I know the mouth/throat hurt, but you need to be eating like a horse right now. It WILL get worse during treatment. I reached 10% weight loss on my last day of treatment, that's the only thing that kept me off the tube. I lost some more weight during first 2 weeks post treatment, but now the weight has started returning.

When you have more questions, write. Otherwise, go eat something, preferably something with lots of calories, and fat and protein. Right now is not the time to be trying to eat that healthy, low fat diet.

Tony

Hi Katy-Welcome to the Forum, and I hope it is helpful for you!

Your case sounds a bit like my husband's. He is 31 and healthy other than the C and had a spot on his tongue for nearly a year. After wondering about it, he went to the ENT for a biopsy. He learned it was SCC right before Thanksgiving 2013. He had a right partial glossectomy in December and just started Rad and cisplatin this week. So we are about 3 or 4 weeks ahead of you with those, if you have any questions.

We will get through this all together--it does feel comforting to read the forum and hear from all the patients themselves. As opposed to just talking to the doctors and googling things...

Please don't hesitate to ask anything here, you are among friends.

I have finished my signature, please tell me if I need to change anything. I looked at abbreviations. I had a hard time figuring out how to abbrev signature. So much information.

I am currently being treated for SCC Stage 2, and I have and RO and Surg Oncologist (ENT).

Tony, I have some weight to lose, about 70 lbs actually. I am unable to eat, I have had two surgeries already removing portions of my tongue. I am only able to swallow water and Boost or Ensure as of right now. I am not even swallowing my own saliva properly right now.

I plan on visiting VUMC for a second opinion and as I understand they are a CCC. My current team is only the RO and SO. I trust him with my care and he has mentioned a MO for possible chemo, depending on what the thing in the Left back of my tongue is. He said surgery is preferred first method of tx but that chemo and radiation can sometimes take care of it as well. So that is what I am hoping for If this place is another tumor.

After one tumor with negative margins and a recurrence only 2 months later, I am a bit skeptical. We did get negative margins this time also, only 1mm on one side and at least 3mm on the other sides. He is certain this place in the back left was not there when he performed surgery and I do not remember it being there either. There is a possibility it is trauma, has anyone had trauma like this post partial glossectomy? The other fear of course is tumor.

Your signature is great! Thanks for adding it. A signature greatly helps us to help you.

As far as weight loss goes, this is NOT the time to lose it. Doctors will prefer the patient doesnt lose anything at all. Most of us have lost considerable amounts of weight. When you see weight loss like that it comes with muscle loss, malnutrition and dehydration. These things can add up to be very serious. I am still very weak 7 years after going thru my first round of OC. I lost not just weight, I lost muscle tone as well. Even though you arent eating, you can ensure your formula is enough to meet the daily minimums.

Of course it could be trauma. You never know what it is until a biopsy report comes back. Best wishes with your biopsy and second opinion.

I definitely am not trying to lose weight. Hoping I can keep up my nutrition and maintain until after treatment. I lost 30 lbs after my first surgery. I think we will be doing a ct. If we biopsy it will be a surgical biopsy so in that case he prefers to go ahead and take the spot out. I'm not sure what else can be done though. I'm anxious about the place and would like some answers asap. This has been tough for me.

I also choked on my oral pain meds tonight. I spent about thirty minutes trying to catch my breath and stop coughing up mucous and blowing my nose. It thickened the oral mucosa after I choked to the point I couldn't stop choking on my own saliva. It was traumatic. I'm nervous to try to swallow my meds again. I have drank water to thin everything out. I'm finally settled, but my tongue is very sore and my throat hurts from coughing so much.

Your signature does look great. You have already become more proficient at using abbreviations than I ever got. Realize there is a 500 character limit to your signature, so as you add more stuff you will either have to abbreviate more, or delete stuff.

I wish I had advice for you about your throat pain and getting/keeping the meds down. Since your surgery was just a week ago I'm hoping by weekend's end you will start to see some relief via normal healing. I know the one week to 10 day point after my surgery was when the pain and other symptoms were at their worst.

I know you are not trying to lose weight, but I think your last comment about scared Christine to death.

As for quick answers, none of us get them as quickly as we want. If you're like me you want those answers yesterday. But a week from now will be more like the norm. So, find yourself something to occupy your mind while you wait. In the Friends forum there is a thread listing all the good movies our members recommend as well as a list of good videos and music available free on Youtube.

Hang in there, it's always darkest just before the dawn.

Tony

Thank you, Tony. Absolutely I want answers yesterday. It will maker us crazy. I'm occupying my time pretty well, but too much time to think is not good right now. My throat is actually feeling fine. My tongue is extremely painful. He took quite a bit this time and the positioning of the cuts is not allowing me to swallow. My tongue isn't functioning properly. I'm drooling a lot and anytime I swallow it gets stuck in the roof of my mouth or on the back left of my tongue. Then I'm unable to push it back. Hope that makes sense.

I do get choked on water and the nutrition drinks at times too. I'm just glad I'm able to swallow at all. I'm hoping I keep this ability through radiation. And maybe my tongue will heal enough by then so I can eat soft foods at least. Thank you so much again, Tony.

All this stuff is like a two edge sword. We want our radiation/chemo to start ASAP, but the docs need to give us a little time for surgery to heal. My wait from surgery to rads was 6 weeks for a tonsilectomy. I thought that was an eternity as my mouth/throat felt fine 2 weeks post surgery, so I was climbing the walls for 4 weeks waiting.

That's when you need lots of positive things to keep your mind occupied, the good books to read, the good movies to watch, the friends to have that extra long cup of coffee with (hot drinks did and still do make my throat feel better, and they help get rid of the rope mucous, a new friend you probably haven't met yet).

That time is also a good time to get on the website and start educating yourself about oral cancer. The forum does a great job of keeping you in contact with people of similar ilk, but the website is where the really good technical and medical information lives, things that you will want to know.

It may be a little early to tell you this, but for others it won't be. Sooner or later you will put all this together in your mind and realize that lots of people who have gone before you stuck around after their treatment was over so they could help the newbies just now joining the family. They didn't have to stick around, they chose too.

Others helped me, so I stay to help others, kind of the pay it forward concept from that old movie. When I was diagnosed all I wanted to know about was tonsil cancer and it's treatment and survivability etc. etc. But now trying to help others I need to learn about all the other forms of oral cancer. It's easy to greet new members and give them that initial warm fuzzy and we're all here to help you feeling, the thing we need the most at the beginning. It's much harder to answer their questions about a diagnosis different from your own.

Sorry for being so wordy. You may be the stick around after type, and maybe not. Regardless of which you choose the website has information that will help you ... and it will do a good job of filling the time between surgery and treatment.

Just don't let it depress you. Keep it at arms length.

Tony

Katy,

I am going to have to be the guy that says get the PEG. No if/ands/buts about it. If you are getting your whole tongue, including BoT radiated. I highly doubt you will be able to get the food to your stomach.

I am over one week post Tx and I can't even attempt to eat orally yet. There were points in my treatment where my tongue was swollen and had multiple open sores(due to the radiation scattering on dental work), any liquid beyond BMX was extremely painful to put in my mouth.

Now, swallows of water alone are painful but doable. I can still take oral meds after I BMX. But you can only use that 3x a day.

I hate my PEG and the smell of the formula more than anything, but I respect what they have done for me.

I still have lost 10% of my weight with the PEG. I'd have certainly been in the hospital without it.

Vanderbilt is the place to be. My is the head of the ENT department and he is who did my sister's surgery in November.