Stage 1 Cancer under left side of tongue front of tongue

T1 just means your tumor size is less than one centimeter. That's just the tumor size. You'll get an official staging after the surgery. If it's in your nodes you'll most likely go to a stage 3. And if it's spread to distant organs, then a stage four. Don't worry. It's not necessarily a death sentence although it's best not to have it spread. I'm cancer free 2 1/2 years after my last treatments and I was stage 3.

I had the neck tube for drainage but no feeding tube. I ate liquids for a week after surgery then slowly introduced soft foods. In a month I was eating normally again. You'll be fine but expect a challenge for a while.

Sabrina23 said:

Stage 1 tongue cancer Thank you Steven Pepe

Thank you Steven Pepe for the posts adn replying back to me with your shared experience.  it is really helpful and encouraging to konw that there is hope  and Thank God you are cancer free after 2 1/2 years.  How long after surgery do I have to wait to get the official staging?  Do they tell me like right after my surgery or I have to wait a week or so for results.  I had a cat scan of my neck done and it came back clean with no signs of metastic growths.  I go for my pet scan on Tueseday of this week.  Will the pet scan show if it went into my lymph nodes or spread? Or does the neck dissection show that kind of results? Let me know.  With them doing a glossectomy on me does that mean they are going to cut out a lot of my tongue they said they are doing a thigh graft on me to reconstruct my tongue? Is that how yours went? I worry that I won't be able to talk or swallow or be normal with part of my tongue cut out?  Do they take alot out of it? I am scared beyond what I can explain but I konw you know what I am talking about.  Is the feeding tube a must after my surgery they told me I had to have one for at least 3 to more than 5 days etc.  I wish I did not have to have the feeding tube?  I don't know why it is so..... the neck tube I think I can deal with.... If you can share more with me please do I apologize for having so many questions.  I just want to be able to know that I can live a long long life there is so much I want to do with my life with my twin sister and my mom.  We work together and live together.  We do everything together.  I hate that when you go online to places they only give you like a 60% chance to live for maybe 5 years or less....that kind of stuff scares me is it true? Or can you go on and live a good long normal life?

Staging will be complete once your surgery is over and they biopsy your lymph nodes. That should be complete in a couple of weeks. You can always ask your doctor or request your medical records to verify everything. The neck dissection is the most accurate because they biopsy the tissue, which is needed for confirmation of cancer. The PET scan only shows cellular activity which might be cancer, might be not. But docs can usually tell if the activity is cancer.

Both tumors I had were not found through scans. I saw and felt both of them and the scans confirmed it.

My team at Sloan Kettering did not do a tongue reconstruction on me. Why some do and some don't I can't tell you. I lost about 1/4 of my tongue on the left side so expect about the same being we had the same size tumor. Overall, my speech has been affected, I can no longer sing like I used to, some words are more difficult to pronounce (t's and d's) and shouting is not an option either. The radiation causes significant impairment but it's the one treatment that is known to destroy cancer cells. I had an awful lot so I'm one of those special cases.

If you don't want the feeding tube THEN SAY SO! My docs said they don't do them unless absolutely necessary. They want you to eat and swallow right away because you can lose the ability to do so if you don't exercise those muscles. If only for 3 to 5 days, tell them you'll drink liquids for that time. Insist on it if you don't want it. The neck tube is not an option as they use it to drain fluids from the area of surgery.

Don't look at statistics. I know I did it a thousand times but there are so many variables that determine life expectancy. Just because you have cancer doesn't mean you're going to die from it. Most people survive it these days. Just accept it for what it is and do what your doctors tell you. However, as I've said in my other posts, stay on top of everything and if you don't feel comfortable or if you have questions, speak up. It's your life and future.

By the way, I am also a twin. In fact, my mom had 2 sets of twins. My twin brother smokes like a chimney to this day and I'm the one with cancer, even though I have a very short history with tobacco. Life is unfair sometimes.

Sabrina23 said:

Twin having tongue cancer

it is very helpful and comforting your words and I pray for your well being and cancer free long life ahead. I am afraid of the tongue reconstruction why do they need to do that on me a flap reconstruction wtih glossectomy and neck dissection? it is alot to comprehend... I am underweight they said before operation on June 3rd - I don't konw how I am gonig to gain weight my body just does not gain weight I have been little my whole life.  Will I be okay with nutrition and being able to eat after surgery?  I want to be able to swallow and eat normally - does the feeding tube get in the way of eating do you have to take all your nutrtion from the feeding tube or can you eat a little food... or soft foods I don't know what to expect there - have you heard of a tongue flap reconstruction is it serious? Or just part of the protocol..... are they common in tongue cancer?  Oh Steven, I just want to be cancer free with no spread to lymph nodes and no perineural invastion.  I just want to get it cut out and that be the end of it.  I am praying so hard for a miracle please pray with me too.  Thank you for everything you have done for me.  Will I be able to talk and speak and swallow?  I want to get out of the hospital in a matter of days.... is that doable?  Is there anyway a stage 1 can go back to a stage 0 after lymph node removal..... just asking 

Sabrina, you have a LOT of questions and I have to ask if you have talked to your doctors about all these questions?  We are all here to help, but I think you may be overwhelming the members here and need to lean on your doctors for some answers.

Sabrina23 said:

sincerely apologize

I sincerely apologize for overwhelming the members not my intent to do so with all my questions.  It is my first time having such a diagnosis and am in a state of mind I have never been in before. Please forgive me.

Sabrina,

I have been following along with your posts and even replied to one of your first posts. We are here to help each person that posts. Some of your posts do repeat themselves, but I contribute that to your being nervous about what lays ahead for you next week. Is your surgery a walk in the park? by no means, any surgery is serious. 

If I told you I wasn't nervous about my own Surgery years ago, I would be lying. But in order for me to beat the cancer I had, I told the Surgeon I wanted the Tumor out of me completely and hit me with the kitchen sink when it came to treatments because I only want to do this once. As I mentioned, I had part of my tongue removed, Radicial Neck Disection, Trach, Drain tubes, PEG Tube for nutrition. I got thru it, you will too.

We all have choices to make each day so if it helps calm your nerves by asking questions here, do so, those that choice to reply will, those that don't will not. All are welcome. You will get thru this, but it will not be like catching a cold, it is a slow process.

My Best to You, All Your Family and Everyone Here

Get a notebook. Write all of your questions down and take it to your doctor appointment and ask the questions. I had a notebook that I brought to every appointment my husband had. It got to be funny- the rad doctor would say “There’s that notebook again.” Because he knew I was going to hit him with questions. If you don’t have any appointment before your surgery, call your doctor and ask. But don’t get ahead of yourself with chemo and radiation, as it may not be needed. It really depends on what they find during surgery. Take it one step at a time.

Sabrina23 said:

Thank you all sincerely for helping me get thru this

I want to thank you all for helping me get thru this - your words, experiences and thoughts have helped me understand better my situation and what is expected and as I am still tryping to cope with the diagnosis.  I am frightened beyond belief.  I am so scared.  I hope you all can bare with me as I continue to write posts because I have so much that is going on in my mind and to have you all to talk to really helps.  I am grateful to you all for writing me back. 

you have done with the members on this board and with your medical team, you should not be frightened beyond belief. You have to set that aside and lean on your medical team and get an I'm gonna do this attitude, get rid of the fear, trade it in for confidence and a can do, no will do attitude. Settle down, you got this. You have very curable cancer. I had stage 4 throat cancer when I was 58, tough haul but I am here to tell ya you will do this just one day at a time every day till you come out the other side being NED. So get unafraid, get aggressive, say I'm gonna do this I will not let this defeat me I am the victor here. OK, I might be gettin carried away here but you know what I'm sayin. Trust in God, trust your medical team and we're here for ya. God Bless

Sabrina23 said:

I think so to I do need to try to

HI ERomanO and everyone - I don't think I am HPV positive they never said that I was.  I thank you all for your thoughts, kindness and sharing your experiences.  It is getting closer to June 3 which is the big day of surgery.  Your words of wisdom and encouragement are more than needed and I am blessed to know you all.  My twin sister Karen, will keep you all posted and share more information with you.  She will use my user name so the message will be coming from Sabrina23. 

Hi Sabrina23,  we all have many questions when first diagnosed.  My suggestion is for you to have someone come with you on your next appointment.  For me, after hearing I had cancer, almost every word after that was waa waa waa, etc.  My wife went with me  and asked most of the questions.  She had a notebook and wrote it all down.  See if you can bring a close friend or significant other with you next time.

Don't worry so much.  It's not a death sentence.  Plus, they caught it early.  You'll be okay.