Hello. Just found the group. Thanks. Diagnosed two weeks ago with a T1 tumor on the lower mouth/tongue area. Current plan is to have it surgically removed with 1.5CM margin. Nodes will be diagnosed at the time of surgery using a prior day dosage of dye (I think). As the cancer cells use more sugar, they can be detected and if the nodes show positive they will be removed also.

FIrst the easy stuff - recovery from the surgery for talking and eating - length of time, how rough a road? T1 = Stage 1?

Hard stuff - Odds on long term survival are not good vs a "clean" slate. I figure if in the nodes, five years are 50/50 and ten years at the outside. These are rough and fly in the face of optimism, but given the chance of reocurrance and present undetected cells in other areas, I need to plan for my family.

Thanks for the help.

Best regards and wishes for everyone on this site.

John

Hi John
Understand the panic.. but firstly do not going running away with the years.. don't put a time limit on your life.. one step at a time.. get the operation out of the way first... your dx is early you have everything going for you on that score.. when are you due for your surgery? I am due my third session of lazer surgery in approx a weeks time.. hang on in there.. you can come through this.. have you got a full team at a good cancer centre?.... keep us posted we will be with you every step of the way..
love and hugs
Helen

John,

Hello and welcome. As we often say "the club that no one wants to join"

I can't answer your questions. Haven't had that kind of surgery myself. But someone will come along that can answer.

As to the odds. They seem to me a lot like statistics. Which if you use the search you will find we have had many discussions on this topic. Odds are like statistics in that everyone is different and their response to treatment is different.

Yes I believe in planning, but I also believe in being positive about certain areas in my life. This is one that all of us try not to let consume our lives. (even though it is such a big part of it)

Guess what I am saying is being prepared is a good thing but I can't believe anyone will come on this board and give you odds. From what you have told us so far you have a good outlook to your treatment. (caught early is very important)

We'll be here to answer anything we can be of help with or just listen to you vent if needed.

Good luck and take care,
Dinah

Thanks for the responses. My full team thus far has consisted of the surgeon (cancer specialsist, head) and a speech therapist. Surgery is scheduled for May 3 or 12. No radiation. No additional testing for other cancer, which has me a bit worried.

Not to be negative on my earlier comments, I have been through other surgeries before (non cancer) and history has been a pretty reliable forecaster of the future.

Thanks,

John

Hey John: I'm relatively new to this forum also. One thing the folks here have impressed on me is to focus on what happens next and not worry so much about years in the future. They will take care of themselves. Also, we all have a 100% chance of living or dying. Either way, we will do one or the other. Think of the 100% living side of the world and that is where you will spend your time and be happier for it. If you have family financial worries, just make sure you have a will drawn up and leave everything to your reason for living. Also, don't forget that living will so she can direct the surgeons if necessary. But these are immediate concerns and should be what you concentrate on, not on 5 - 10 years from now.

Remember, your positive attitude has a big effect on the outcome of your treatment as well as how you effect the well being of your family. You have to keep them on the positive side, also, and that's easier to do if you think you'll live forever, so think about forever and not a finite limit that may not apply to you at all. Good luck with your surgery. Hope it turns out OK. Consider asking about rad/chemo post surgery as it can assist a lot in stopping a recurrance. Regards, Kirk Georgia

John,

Before you read this, remember this is just my experience and I'm a finance person, not a doctor!!

I had surgery on my mid-tongue on Thursday, 3/25/04, with 1 CM clean margin (early stage II). The largest piece was removed just beyond the tip. Looking over my records, I didn't take pain meds on Thursday or Friday. The worst pain was Sat and Sun. This is because of the steroids given. I had different ones for the intial excision on 2/27/04 (removed majority of tumor - they didn't know it was cancer), and the more difficult pain then was day 1 and 2.

I kept a bilateral facial ice pack around my face the entire time (highly recommend it) and tried/failed sucking on ice chips. I started drinking water and eating soup late Friday. I was sick of Ensures, jello, soup, etc. by the following Thursday and took 1 hour to eat 1 piece of pizza (cut up very small). I also gave in and ate a "Grab size" bag of Doritos over a couple hours.

I remember my tongue getting physically tired from trying to eat and talk. It's a muscle like many other parts of your body; it's trying to re-heal and re-learn how to work.

I highly recommend meeting with a nutritionist. I met with mine today, through the hospital, and I wish I'd met her before the surgery. She gave me a daily calorie and protein, which is higher than normal to help your body recoup, and a more in-depth explanation why. To reduce the amount of food intake, she gave me high cal/nutritional and low volume smoothie recipes. While this is due to the radiation side effects (hurts to eat/swallow/brush teeth after), it would have been awesome the first 1.5 weeks following surgery.

My speech improved dramatically each day, and continues to do so. However, radiation is setting me back. My husband says when I'm mad, my speech is perfect . Your speech recovery will depend on the removal place of the tumor (tip of the tongue is used to articulate, so that may take longer to re-learn), how deep, if any nerves are removed (no major ones for me), amount of swelling etc. Your doctor may have a prior patient willing to speak to you that experienced the same placement/stage of tumor, and you can listen to their speech 1 month, 1 year, 5 years down the road (I listed to a woman who'd done it 15 years prior).

My voice changed for about a week from the swelling, but returned to normal afterward.

As for survival rates, I had the same inital reaction as you and it freaked me out. However, medicine takes huge advancements every year. Those studies are from a different time, even though it may only be from 5 years ago. The marjority of tongue cancers are caught in Stage III and IV, which I assume skews the studies. These are treated much differently and have different outcomes from Stage I. I've read many posting and met many people that had Stage IV and kicked cancer's rear-end! Ignore the studies and blaze your own trail!

If you're anxiety level is up, you may want to discuss radiation or bracheytherapy with your doctor. However, I don't believe it's recommended for Stage I. Ask your doctors a zillion questions and don't be afraid of second opinions. Radiation couldn't start for 3 weeks after my surgery (many times it's 4+ weeks), so you have time to discuss it. I have all my questions written out from my visits, and would be happy to email the list to you for ideas. Just let me know!

Sabrina

Hi John. I'm not going to mention statistics or attitude as the research on both of these things is discouraging. I can't really speak to the surgery as I didn't have it. What I will do is ask if you have gotten a second opinion yet? If not, then let me encourage you to take all of your diagnostic documentation to the nearest multi-disciplinary cancer center and get a second opinion. You owe yourself the absolute best care available and this is something you want the best chance of getting right the first time.

-Brett

Hi John
I had stage 1 tongue cancer removed just 6 weeks ago.I had a small ulcer that stayed for longer than 2 weeks,so off I went to the oral surgeon,first biopsy came back stage 1 SCC...went back in the next day and he removed a pretty big chunk of my tongue,not sure how much.The first few days were the worst.Swelling and pain were not that bad,he gave me Loricet,but I only took Motrin every 4 to 6 hrs.eating was pretty hard the first week,but once he removed the stitches after the first week,the healing went really fast.I had alot of reflex pain in the first few days in my throat and ear,so dont be shocked if you experience any of that,it was normal.I too,am only having surgery.I have had 4 different opinions,my oral surgeon,my ENT doc and two oncologists and they all say radiation isnt needed.I have worried myself sick from all of this,so many fears,questions,etc.but none of us have a guarantee in life,cancer or not,so we have to learn how to enjoy and live everyday and hope for the best ..if you need someone to talk to,please feel free to ask
Paige

T1 = size of the primary tumor , Stage = How far it has progressed. The staging process, and the definitions of the meaning of the TNM and staging system is on this site, on a link from the first page. http://www.oralcancerfoundation.org/facts/stages_cancer.htm

Hi John, I'm new to this forum but am a two year survivor of a tumur on my tonsil. The surgery wasn't so bad. The radiation itself isn't to bad either except it's everyday. Eventually the absorbed radiation increase and life gets a little unpleasant. My advice now is eat everything you want to and as much as you want to. Have the whole chery pie with ice cream. In six weeks you won't want to eat a thing. Keep drinking water. A week after you finish radiation, you will begin to improve. You will be at the bottom of the hill and you will know that it gets better from this point on. Two weeks out you might taste food again and it will taste fantastic.
This is probably the toughest thing you will go through in your life. But you will go through it and life will be better on the other side. I could write about this forever but just know this, you will make it. Cancer people hug each other all the time so a hug to you my friend. My profiles listed if you want more help. Bill

John,

I had surgery for T1N0M0 tongue cancer on 7/1/03. I had a partial glossectomy (about 25% of my tongue removed)and a modified neck dissection. I had a CAT scan and a PET scan prior to surgery. My speech is perfectly normal now and has been since about November. I can eat everything, although I have no taste/sensation on the side of the surgery. I was in a panic too when I was diagnosed mostly because I am a dental hygienist have some professional knowledge. I have to say that all in all my surgery and recovery was easier than I ever thought it would be.

Barb