I everyone. Please someone tell me that there are situations where the docs says that they have go all the caner off of the tongue and that because it is superficial and not into the muscle that things aren't going to get worse. I'm hearing all of the pain and torcher that you all have been through and I'm not quite sure where I stand in this picture. I know that the docs will have to answer all the really hard question but it would be really nice to hear some you

Kelli,

For peace of mind, it would be beneficial for you to seek out a second opinion from a comprehensive cancer center with staff that has significant experience with your specific cancer.

I had radiation and chemo but no surgery and they feel they have rendered me cancer free. There is no guarentee it won't come back and there is no guarentee they really got it all but it has given me peace of mind. If not, I would scurry to a second opinion just as I did before treatment started.

Ed

Hi Kelli,
being overwhelmed is part of the big "C" experience I'm afraid. You don't even need to be bipolar for that. Depression and anxiety are normal side effects. Talk to your doc or advice nurse about meds to cope with that. They could call that in to a local pharmacy and save you a trip. These side effects are well known. We know your pain - we have all been in your shoes.

You were wise to go to Mayo for treatment, even with the long drive (that would be like me driving from San Francisco to LA).

Typically "multiple modality" treatments (such as surgery and radiation) are recommended for more advanced cancer. You need to find out what staging your cancer was. If it was a stage II or higher I would get a second opinion about prophylactic radiation. Invasion into the muscle isn't the worst thing but metastesis to the lymph nodes is an automatic stage upgrade. Surgical resections, such as what you had are designed to provide margins to deal with any invasion into the muscle tissue.

It's easy to get freaked out by some of the stories here, some people people have had a really hard time. I freak out myself some times. But truth is that many of us are cured the first time around and you need to hold on to that and not live in fear.

Like Ed I had radiation and chemo only and I am 16 months cancer free today. I had an advanced cancer.

Kelli,

I've always been the one who must know everything before getting into anything. Whenever my girlfriends popped out a baby, I was getting explicit details on what to expect every second through the process. Now I'll be backing off of that theory.

When I first got into treatment, I was extremely frustrated with my radiation oncologist because I felt he was being so vague about everything. Looking back, I'm glad he was. It would have been more difficult to go through everything, I think, knowing exactly what I was in for. Everyone is different, though.

I recently posted a similar comment to the following: If what you read starts to scare you, skip it. I had to do that to save a lot of anxiety, still do, and probably will always have to. I'm not helping anyone, especially myself, if I become a basketcase.


Sabrina

Hi Kelli,
I'll agree with Sabrina It is a fine line. I had panic atacks at first reading statistics. It is a good time in your life to review and make changes for the better.

Life is a terminal disease. You may already be cured of this cancer! On the other hand it was cancer there is no way around that. There have been stage 1 cancers that have become terminal. Likewise there are stage 4 cancers that have been beaten and survived. No one knows for sure.

I still marvel at my medical file when I go to the doctor now. For 40 years I bet there wasn't 50 sheets of paper in that file. Now it is a pretty large book. When I fill out medical history sheets where there used to be empty boxes for previous medical issues, now it takes me an hour and I find myself staring at the sheet thinking this isn't really me.

Yes we had cancer, there is no turning back. Could it kill me (or you).....Yes.....BUT IT HASN'T YET. After some time you can accept this and put it on a shelf. I don't think it is good to forget about it (denial) nor to dwell on it either.

Direct the energy you are spending on worry towards living each day as a gift (that was always true even before the big C) you will find a happier life each day.

Take care

Hello, Kelli.

Please be reassured that there is a wealth of information at your fingertips through use of this site. Sometimes we can't get our hands on the info as soon as you would like it, but be patient and persistent. We are all here for each other!

Your situation is very similar to my own. I had a very small tumor removed in February; recurrance three months later right next to the original excision on the tongue. Surgery at the end of May indicated clean margins, Stage I, no lymph node or distant metastasis. Unfortunately, the cancer board recommended radiation.

I will stop right there and tell you that few of us are doctors and none of us will attempt to give you a diagnosis. I do think that it is time to get a second opinion.

There are two National Cancer Institute approved centers in Indiana where I am sure they can help. The Indiana University Cancer Center has a Head and Neck Oncology Department Whose Director is Dr. Stephen Williams, MD phone #317-278-0070. Purdue University Cancer Center is also available (sorry, I didn't look up their info).

Say a quiet prayer, as we will for you. Now it's time to be proactive. Make a phone call and I think you'll feel better, because both the doctor AND you will always have a say in your treatment.

Take care, David

Thanks,
You all are so supportive. I'm starting to feel a little better about things now. I got a little scared the other day when I chewed on the tongue in the middle of the night and woke up in a pool of blood. I went to the ER just to make sure it wasn't infected and that indeed I did just bite my tongue. I found out that its not infected and that it seems to be healing well. It was really hard to wake up to all that blood and be so far away from my doctors. But, today I am happy to report that I was able to finally comsume a yogurt. I've lost 18 lbs. in almost two weeks. I can't believe how hungry I am. Also, I was able to sing in the church choir today. I bit my tongue a couple of times but it was worth it.
Thanks again Kelli

Kelli,

I've had problems with that tongue-biting thing for a long time. A number of years ago my dentist started making me wear a mouth guard at night (upper) to prevent teeth grinding, and I later found that if I wear both upper and lower mouth guards while I sleep I can't possibly bite my tongue. It's a bit cumbersome, but effective.

Cathy

Hi Cathy,
Thanks for your suggestion. You know several people have told me that lately. I'm starting to have problems with biting it during the day to. I guess my tongue doesn't move as fast as it used to so when I'm talking sometimes it gets in the way and I bite the tip. I'm a little worried because one of my doctors told me that cancer can grow at the site of an injury such as biting your tongue.
I see that you were treated in 1989 for SCC and you had no reoccurance. Can you tell me more?

Hi Kelli,

I was diagnosed in March 1989 after going a long time with a suspicious (and growing) spot on my tongue that an internist, dentist and oral pathologist all said was "nothing to be concerned about" because I was a nonsmoker. I finally got a referral to an oral surgeon who performed a biopsy and determined that it was cancerous. He in turn referred me to a medical oncologist who worked with a head and neck cancer team at Dana Farber Cancer Center and they collectively decided I needed a neck dissection, partial glossectomy and radiation. The results of the surgery indicated that they had clean margins, and the lymph nodes they removed were clear, but the tumor showed some signs of being potentially aggressive so they felt strongly that radiation was necessary. I ended up having external beam radiation followed by brachytherapy.

Since my tongue post-surgery became lopsided (and swollen for awhile), I also had the problem with biting it during the course of eating, talking and sleeping. In fact, sometimes I still do, although less frequently. It takes some time to get used to it, and I found I had to work it slowly for awhile to figure out how to keep it out of the way. At least when I'm awake I can deal with trying to be careful with it, but I've had to resort to the mouth guard approach for sleeping.

By the way, I also sing in a church choir, and getting back to singing was a bit of a challenge for me.

Please stay in touch and keep us updated on how you're doing.

Cathy