Kyle,

Welcome -- as you're finding out, you have plenty of company here. My diagnosis also sounded similar to yours in some respects: I was 39, didn't have the obvious risk factors, and was caught totally off-guard when I found out I had this disease.

Fortunately, my oral surgeon was much like your second doctor -- he knew enough to hold off on any significant surgery until he could get biopsy results first and then involve a head and neck cancer team ASAP to recommend the course of treatment.

Keep coming back here as often as you want with questions and concerns, as there will almost always be someone here who has been through what you're experiencing. Also, continue to arm yourself with the wealth of background information from this site that will help you ask the right questions of your doctors.

Cathy

I am on my way down to UCLA for surgery today. Feeling pretty good, all things considered. I'll try to post the results and my status in a few days.

-Kyle

Good luck and we'll be thinking of you.

Take care,
Eileen

Kyle,

Just wanted to let you to know that I am thinking of you. The surgery is sure to be over by now and I hope that you or a family member are up to posting in a few days.

I had the same surgery you had and I know how difficult it is to be waiting for the lymph node report while trying to deal with the after effects of the surgery.

You will be in my prayers and if there is anything you need to know, you can send an email or post here.

Jerry

Kyle,

My thoughts are with you tonight, hopefully you are doing well. We will all be hear waiting to here how you made out and answer any questions possible. Sounds as though you are having the same surgery I just had so Anything i can answer for you I will,....best wishes for good news on the lymph nodes and for you recovery !

Shar

Back at home!

The surgery is complete: 25% of tongue removed, lymph nodes removed. All results better than expected.

Day of Surgery:
Went to UCLA around noon. Lots of family support. I was scared, but just joked, and laughed to ease the stress. Another lesson learned, be nice to the nurses. They have your life in their hands. The way I looked at it, they were there doing a job I couldnt do, trying to save my life. I was thankful, polite, and joked with the staff. Unfortunatly the surgery was delayed and delayed. At 8 PM, my doctor and I talked about options. I can't say enough about how proffesional and curteous he was. I was not at all happy with the delays, but my respect for my doctor grew even more. Eventually we (together) decided to delay till the next day. That day went smooth. Before I knew it, I was just OUT.

Recovery:
I'll post more about this later. Hardest three days of my life.

Results Four Days Later:
The doctor had warned me about all the possible things that could happen during surgery. In the final result, few of these things occurred.

I didn't even need the feeding tube. I can talk poorly, and I can drink liquid. Anything thicker than water still alludes me. My tongue just cant make it get back there. My left ear lobe is numb, and may stay that way. Small price to pay. Shoulder movement is fine. Mouth moves fine. Every day is better than the last.

Next Steps:
Tomorrow I hear results from Lymph node pathology. The doctor did not notice anything wierd as he extracted my nodes. Together with a good PET/CT scan, we are hoping for the best. I am glad that I did not know the results the day after surgery. Those first days were so bad, that more bad news would have been too much.

I may still have a long road ahead of me with this disease. With continuing luck, I am hoping to avoid the next step, Radiation/Chemo...


-Kyle

Hi Kyle, your surgery sounds identical to mine - including the partially numb left ear. My doc was surprised it was only one - as he told me in advance that would probably happen. I too avoided the feeding tube and the trach. Glad you came along well. Sorry to hear of the delays though.

It's funny - I can't really remember a whole lot about those first three days. I stayed in the hospital for 5 days total and didn't have anything including water by mouth for the first 3, so that could be the difference. In addition, I was pretty high on morphine most of those first few days - but I remember trying to eat the first time. It was quite painful.

Keep your hopes up. I thought I sounded horrible at first - but my voice is back to what others would think is 100%. I can still hear slight differences in some words and the way they feel when I speak them. I also had the trouble moving my tongue to eat. Once your swelling goes down - that will resolve a little more. It was really hard to eat some foods for probably a good month or two. But, overall, I thought it didn't take too long to get back to normal. I remember my doctor asking if I was still having trouble with mashed potatoes and I was already eating steak (albeight - very small pieces!). He couldn't believe how quickly I recovered. I have to credit the surgeon for most of that though as he really did a good job.

Sounds weird, but I remember one of the first solid foods that I could eat was macaroni and cheese. The homemade kind. I could eat "One noodle at a time" and I kind of just let it "slide" down real easy. This may or may not work for you and I definitely would be careful trying it as it probably wasn't my smartest move in the world - but my family was eating it and it smelled so good!

I lived on Ice Cream the first few weeks after surgery. Eating tons of ice cream and still losing weight!

Good luck with everything! I hope the rest of your recovery goes well.

Kyle

Glad to hear you are home ..SOUNDS identical to mine as well !! i was in for a week and had no tube or trach and I dont think I had food for like 3-4 days and the 1st few days were horrible ( I remember only 6 weeks ago LOL) everyday gets a little better . I to have numbness in the ear. Mac aNd Cheese..mmmmmmmm that is what my gramp brought me too !!! I can eat most things now..I have to cut them up as i have the droop and alot of numbbess.. i however have 2 teeth that need to be pulled on my right side they are up in the gums and I have to say the past 6 weeks have taken a toll and I need to have that done..If your nodes come back clear ..that is a GREAT thing...Best wishes to you and know that THINGS WILL GET BETTER !!!

Sharlee

Hi Kyle - I'm also a member of the same club - had the same surgery as everyone else. Eating and talking were very hard at first - pretty much lived on soup, yogurt, smoothies, and ice cream for a while. Then I also discovered mac and cheese - and lasagna!! My sister made us one, hoping I could eat it, and I did! My final victory was eating a big, fat juicy hamburger about 6 weeks after surgery!

Now, over 10 months post surgery, everything is pretty normal. Sure I still have some numbness in my left ear, left jaw line and along the left side of my tongue - but eating is totally normal, and my speech seems pretty normal too, except when I get very tired and then I tend to slur words a little if I don't watch it...

Hope your lymph node results are good- will be thinking positive thoughts and sending them your way.

I love the amount of feedback and support here. Just fantastic. If anyone were a pessimist about the state of humanity, his ideas wouldn't survive cancer treatment. eg/ Last night a coworker showed up at my door with a Jamba Juice Smoothy, just because he thought it might be good for me. My brother took time off work, flew down from San Fransisico (at his expense), just to sit in the waiting room with my wife. And many more anecdotes.

LYMPH NODES ARE ALL CLEAR!!!!!

Doctor just called to say they are all good.

Unfortunatly there were some "features" in the Pathology of the main tumor that make him want to consider Radiation. UUghhhhhh.

Does anyone know if Rad treatment for the Tongue is better/worse side effects that Rad for Lymph nodes? I am going to poke around this site, I am sure I will find an answer in previous posts.

-Kyle