Hello,
I'm new to this forum I've been reading some of the information here for about 2 weeks. I was diagnosed with SCC on my tongue Feb 3. I have surgery next week to remove the tumor as well as some lymph nodes from one side of my neck.
A scan did not show that anything had spread to the lymph nodes so they are taking them out as a precaution. So it's a T1N0M0.
A bit about myself, 28 year old, healthy and fit, never smoked. Noticed sore on tongue around Thanksgiving 2010. Saw dentist for cleaning and to ask about sore Jan 25 since it seemed as if it wasnt going away on it's own and I was getting worried and it was becoming painful. He referred me to an oral surgon where biopsy happened Jan 31. Oral surgeon called me on Feb 3rd to tell me about the SCC.
Since the diagnosis I've been to specialists where they reviewed my biopsy slide, I got a scan, and he then met with a team to discuss my treatment plan. The doctor did a great job explaining everything to me and answering all of the questions I have had for him. From what I've gathered if I was just having the tumor removed from my tongue it would be outpatient (the amount/location of removal should not affect my speech or ability to eat). But since I am also getting lymph nodes out I will be in hospital 3-5 days.
I'm glad that this was caught early but am still trying to process everything that's happened in the last month. This will be the first surgery I've ever really had except for removal of wisdom teeth. So I'm a bit scared and really not sure what to expect. If anyone has any insight as to what I can expect after removal of part of my tongue and lymph nodes from one side of my neck, that would be great.

Thanks

Hi Claire, welcome to OCF! You are young to be going thru this. Your age will help you to recover quicker than someone who is much older, say 60s. Im sure you are afraid, thats a normal thing being afraid of what is unknown. I have not gone thru the type of surgery that you are facing. But I have gone thru several other surgeries to remove cancerous tumors from my cheek and jaw. Im hoping you are being treated at a cancer center where they are familiar with oral cancer.

Going into any surgery just remember the doctor is taking a piece of your body away. They are skilled at this and will do their best to take as little as possible but still get all the cancer. You will be a bit sore but they normally will do a good job keeping you under pain meds. Make sure if you hurt to tell your nurse so they can adjust whatever you are getting for the pain. It will not help one bit to be in pain. Many hospitals are short staffed so do not wait til you are in agony to call your nurse, it could take a few minutes before they will come.

Will you be having any other type of treatment like radiation? Or is this going to be dependent upon the outcome of the lymph nodes? Even if you have been told this will not affect your eating, it will probably be uncomfortable to eat for about a week or two. You probably will be a bit sore and may not feel like talking very much for a few days. This is normal so do not be surprised if you encounter this as well as being swollen.

I wish you all the best with your upcoming surgery. Look past this bump in the road to having a cancer free future!

Hi Claire,

I just wanted to ask if you have children? If so, it would be really helpful if you can have someone help out - at least the first week.

I had a lateral tongue resection 1/17/11 and am 5 weeks out. Are you having a resection or partial glossectomy? My tongue was sore and I slurred my words for 2 weeks following my surgery. The best advice I can give you, like Christine mentioned, is to take pain medications if you need them. I tried not to take any and the pain was extreme. Once I got it through my head that it is okay to take them, life was much more pleasant.

My surgery was inpatient and I didn't have any lymph nodes removed. I still have some difficulty eating and a minor lisp but am told I should be back to normal soon. Hope this helps a little as what to expect in regards to your tongue. I am sure you will hear from some others who have had a neck dissection.

I am so glad you found this site! When is your surgery?

Yvonne

Thanks for the responses. I am going to a cancer center and they are familiar with oral cancer. From everything I've heard I will just be having surgery, since it is a very early stage and the tumor itself it very small. The scan that I had did not show it as having spread to the lymph nodes, they are taking the lymph nodes out to be sure that they have all of it.
As far as the tongue surgery, not sure what the official name for it is. They are only taking out the part around the tumor, which is on the left hand side and small <2cm so I should have a lot of tongue left. From what I was told, nobody would be able to tell that I had part of my tongue removed except me and anyone I tell.
Surgery is a week from today. No kids.

Claire...awesome decision my dear! CCC's are the place to be if you're diagnosed with this stuff! Keep your chin up but I think you've got this thing.

Eric

Hi Claire - So glad you found this forum. Sounds like you are in the right place for some quality care and how great that your team of doctors did such a good job explaining everything . My son had 1/6 of his tongue removed and right after surgery, the doctor came and explained everything that happened and also mentioned that the tongue "regenerates" itself. It probably depends of course on how much is removed. Other information I read re this is that the tongue spreads out to fit the space it finds itself in. Right after surgery, my son communicated with his laptop because of the soreness, and he only had a slight lisp for a very short time after that and no trouble with speech. He's doing just great, now! I'm sure you will, too.

Hi Claire
My husband's 1st surgery was for a removal of about 1" sq area midway back on the underside of his tongue. He had a little slur for a couple of weeks but could be understood right after surgery and was eating before leaving the hospital. He did have PT for limited shoulder movement due to the lymph node removal and that was probably what bothered him the most. Hope this helps.

Hi Claire,

First, welcome to OCF. I'm glad you found this site so early in your treatment. Your story sounds just like mine...sore on my tongue and the dentist sent me to the oral surgeon and the rest is history. I was 27.

I can't lie...you will be in pain. I never had any lymph nodes removed so I can't speak to that but the partial glossectomy (I'm assuming that is what they are doing?) is painful. I would suggest to buy plenty of soft foods and Ensure. It is important to get calories so you can heal properly..I made that mistake once and it wasn't fun. I have had 4 partial glossectomies...

About the surgery..I know you are nervous. Try to remember this is what these people do everyday. In my experience the doctors and nurses are so kind and will put you at ease..hang in there and keep us posted:)

((((hugs)))

Hi Claire,

Sorry you are having to go through this but you've definitely come to the right place for information and support. I had a partial glossectomy on 2/2/11 so am three weeks post surgery. I had an artificial graft on the side of my tongue, wore a bandage for two weeks and was on a totally liquid diet for that period as well. Last week the bandage came off and I can eat pretty much anything I want except sharp food like chips. I also find acidic or spicy food to be painful. This is the third surgery on my tongue and the fifth in my mouth. They were all a little painful but nothing that the meds couldn't handle and in all cases I was eating and speaking normally within a month if not sooner.

I haven't had any lymph nodes removed so I can't speak for that but hopefully that too will heal quickly and with no more than moderate discomfort.

Wishing you all the best, you're in good hands- both with your surgical team and your new found friends here. Will be keeping you in my thoughts! Keep us posted.

Hi Claire,

Sorry you are having to join us here but you could not have found a better resource of caring people. In April of 2010 I had the same 2 procedures you are having. The only difference was my tumor was on the right side of my tounge. I was in the hospital for two days after the surgery and was back to work in about 10 day's. I am almost a year out from my surgery and I have no pain and the scar on my neck from the partial neck disection is almost invisible. I had a follow up appointment with my surgeon today and everything is still looking great with No signs of any problems.

I know the surgery may seem scary, but I found that in reality it was not all that bad.... (although not pleasant) :-)

I would be happy to answer any questions you might have since our dx and treatments sound like they are almost identical.

Tommy