Hello. My name is Kyle; this is my first posting. I was diagnosed with Squamous Carcenoma on the 3rd of March. For now, they are calling it T2N0M0. The tumor is in my tongue.

This site has been a wealth of information as I come to grips with my current situation and a certainly changed future.

I have had fantastic support from coworkers, freinds, and even people I dont know well. I have a loving wife and two beautiful small children.

I am scheduled for surgery on the 15th. Removal of the tumor (maybe as much as 1/3 to 1/2 of tongue removal) and a sampling of lymph nodes for pathology. The doctors seem to think that the lymph nodes may be unaffected at this point. Even with the CT and PETR scans it looks like the state of my lymph nodes wont be positive until then.

I am more than a little scared.

-Kyle

kyle dont let the fear over come , you have to control the cancer , not it you. I know its hard pray for help for the anxeity , you are in my prayers ..... see the cancer gone in your mind at all times and try to keep upbeat. praying kim

Kyle and family, no doubt that you all are in for a bumpy ride for a while. How old are your kids? What kind of support system are you thinking of putting into place during surgery and during recovery? You and your wife will need some help to manage everything. Please keep posting and asking any questions you can't find answers to. You both can get strong support here. Good luck. Amy in the Oz

Dear Kyle,

I still remember the early days after my husband

Kyle,

Just wanted to let you know things will be OK. I know it is hard to even think about loosing part of your tongue.

I lost part of mine too and it is doing fine. It feels a little funny but I can talk OK. At first there were a few words that needed practice. It sounds like you caught this early and that is good.

So think positive. You are going to be OK.

Take care,
Diane

Kyle;
You will get by and really be surprised at how well things will come back after surgery. During my "second round" my surgeon told me that if I had to have more removed that folks function very well after having up to half their tongue removed. There are lots of folks here that can provide great guidance and advice for you.
As several have already said, a positive attitude and a great support team will mean a lot through your journey, and it sounds like you have both.

Best wishes and you're in my prayers,

Steve

Kyle,

Good luck!! You have found the best site to help you through your surgery and Tx. There are so many people who have had exactly the same surgery and you should ask as many questions as you want. No question is too small.

It helps all of us if you tell us as much as possible; like where you are having the surgery and what, if any, followup Tx has been discussed.
It's good that you are the poster. Try to encourage your wife to post as well.I'm sure she has some questions herself.

Remember this site will be there for your family as long as you want.

Thank you, all. Great support here.

I am 41 yrs old. My children are under two, girl and boy.

I am havng my surgery at UCLA. It has been a positive expereince, so far. I also went for a second opinion at Cedars Sinai. Same diagnosis, but its good to feel confident in the plan.

I have one experience that might be worth passing on. My dentist first noticed the lump. Amazing I could have a 1 inch x 1/4 inch lump and not know it! He reffered me to an Oral Surgeon, as at this point it seemed unlikely to be cancer becasue I dont smoke or drink. This Oral Surgeon wanted to cut it out and then do the pathology to be sure it wasn't cancer. I went to a second doctor because at that point the thought of cutting that large a piece of my tongue was shocking! The second doctor took what I thought was a more measured approach, and now in hind sight, I believe saved me a great deal of pain and delay in treating the cancer. The second doctor did the biopsy first. Painful, but when it came back with SCC, he reffered me directly to UCLA even getting me an appointment when I was unable to get one sooner than a month away. The lesson: a second opinion is a good idea.

-Kyle

Kyle,

One thing I can say is Knowledge is power. the more you know about the disease and treatmets options the better of you are and you will know what is going on . I am a month out (my month was up fri) from having the same surgery you are having. I too am young 35 non smoker non drinker. It is no ride in the park , but you get through it ,best way, one day at a time . I am still waiting for things to"comeback " as they say, but everyday gets better. I never lost the ability to speak, just a few words sound funny almost like I had novacaine. Feel free to email me with any questions and I will do my best to answer ,seeings how I am fairly new to all this my self. But am Fresh with the surgery ( waitin to hear on further tx) you are in the right place for information, but even more so ...for support ! Best wishes and keep us posted!

Sharlee

Kyle,

It sounds like your situation is almost identical to mine. I was a bit younger though. At 32, my dentist found a spot. It didn't hurt and I had no risk factors for cancer so I ignored it until the next cleaning appointment with the dentist. About a week before that appointmnet, it started to hurt when it brushed against my teeth. So off to the Oral surgeon I went and he did a biopsy. Few days later, "You have cancer." A few days later, my Otolaryngologist (ENT) said I could loose up to 1/2 my tongue and a lot from my neck. Did a PET scan before the surgery and confirmed that one lymph node was positive so the cancer had spread but it was only beginning to spread. Surgery confirmed that it was only in one lymph node. Radiation for 7 weeks took care of the rest.

Since I am so close to your case, let me know if you have any specific questions. I probably have been through everything you are about to face.

And finally to always give hope, I am 4+ years out and still cancer free.

Take care and fight hard.
Jim

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

Hi Kyle,

Sounds like a great deal of good news. Can't comment about the radiation, as I didn't have it. I'm sure you will get many answers to your question.

My experience was the same as yours has been up to this point. You may find some stiffness in your shoulder after awhile. That wouldn't be unusual. Also watch out for swelling in the neck area from the accumulation of lymph. This is a common side effect of the neck dissection and the condition is called "lymphedema". There will be suggestions for this if it occurs.

Good luck with your progress and keep us posted as to the recommendations for radiation, if it is deemed necessary.

Jerry

Kyle,


Great news about the LYMPH NODES !!

Sharlee

Kyle
Mine was may of 05. Stage 4 spread to nodes.
I just bought my boys 12 & 15 now a go Kart, we plan on doing some racing this summer. I look a life alot different now. I hope the best for you my freind.

Kyle,

Don't be surprised if they decide to do the rad that they also rad both sides of your neck.

Kyle,

Don't be afraid of the radiation. If you have to do it for a better chance to survive and never face it again, it is a good thing. Is it difficult? Yes. Is it survivable? Yes.

I had the same surgery as you but on my right side. Lost 1/3 of the tongue and did radiation on both side of the neck and from the front. I am 4 years out from the end of my radiation TX and still cancer free. I would do it all over again too if I had to!

The numbness faded with time for me and I have all sensation back.

Jim

Hi Kyle,

Great news on the report today. I think the radiation issues are going to be similar in those locations. If you have to have it you will find a lot of information here but see what they say first. Hang in there and celebrate that positive report.

Regards JoAnne