Hi everyone, i'm a newbie, found out last week.
Going to doc tonight for second opinion/surgery consult but it looks like i'm enjoying the last few day's with "a good bit" of my tongue.
So far the good news is he said there was nothing to biopsy besides the tongue itself which I think was stage 2. I have ct scans on wednesday of neck and chest.
I think I'm more scared of chemo than of the surgery, but I hear sometimes if your clean everywhere else they don't do chemo, that's what i'm hopin'.
Just wondering what's the recovery like from the tongue op? or the lymph nodes from neck? I'm hearing they might do that too.

dan

Welcome, Dan. You sound like you have a positive attitude, and that will help you immensely along the way. As far as recovery, I didn't have anything done to my tongue, but had a tumor removed from the back of my mouth and a modified radical neck dissection. I was in the hospital for 8 days only because they were monitoring a graft. Two days after I got home, I was out doing yard work. The swelling took a while to go down, but I felt terrific. Everyone here will pretty much agree that the neck surgery is a piece of cake compared to other treatments. I am not aware of chemo being done without radiation, although radiation is often done without chemo. In either case you can get through it. Just look at it as a small price to pay for being alive (grin). There are lots of people here who have had tongue involvement who can help you, and if you do a search I am sure you can find information. Let us know how your CT scans come out.
Joanna

Thanks Joanna, NY has been cold and I can't wait to just get this past me and do some yardwork myself. The second opinion doc was way more optimistic, plus he had an insane amount plaques on the wall, I like that in a doc. He's getting the slides double checked and we are going to schedule surgery tomorrow. Lymph nodes on the right side and the tongue in the back right are a piece of history. He did give me the choice of radiation instead of surgery but since i'm 34, I'm going for the knife....yipe!

I'll post how the ct scans go I should know by Thursday.

Dan... I am glad you have found someone that you have confidence in to help you. Those patients that seem to have had the best long-term outcomes from this, have mostly had multiple types of treatment, for instance surgery and radiation. My personal recommendation to you is that you also get a consultation from an oncologist that is not surgically oriented to hear his perspective. Decisions made by a multidisciplinary team yield statistically better results. This doesn't mean that you haven't found a great guy. But he likely has a singular perspective based on his specialty. Ask him for a referral to a radiation oncologist as well. This doesn't mean that you won't get cut by him, but you may decide that some combination of therapies is right for you. I am always afraid of the old saying, "If all you have is a hammer, everything looks like a nail." I don't care for it much when it involves treatment planning...

Echoing what Brian said, from another perspective: Chemo is unpleasant to be sure but it will pass. Radiation is not pleasant but it too shall pass. I would be more scared of not having a treatment with the best possible outcome rather than the treatment modality. Just some food for thought...

Thanks for the food guys...I should be getting results from ct's today and have pet scan tomorrow. i'll keep you posted.

Dear Dan,
I had a partial glossectomy (20% of my tongue removed) and a neck disection(28 lymph nodes removed) I had Stage I Oral Cancer and my Doctor feels that I don't need further treatment.
If you take your meds when you are supposed to after your tongue surgery you will be okay with the discomfort. I played around with my pain meds and took them when I really thought I needed them. That is not a good idea. I realized that pretty quickly. The discomfort will pass in a couple weeks. I found eating soft foods such as rice pudding, ice cream, water ice etc. helped so much. The neck disection also is uncomfortable for a short time. Your neck will feel quite numb and also sore. But, that feeling also passes with time.
Did your doctor tell you how much he is removing from your tongue?
I wish you the best of luck. I will be think of you.
Rosale

I disagree with one thing that Gary said. Radiation is unpleasant but, in my opinion, it does not necessarily pass. Many of the side effects are permanent and quite unpleasant. After more than six months after radiation ended I still have problems eating, dry mouth and strange feelings in my mouth. I don't believe that I will ever be able to eat like I did before.

Danny G.

Danny, you are correct about standard radiation. However, Gary and I had IMRT, which returns one much closer to normal than the other kind. I wish with all my heart that IMRT had been available for every person with dry mouth! Although I had some gosh awful burns inside and out, my eating is now normal and other than the surgical scars, when my hair grows back I will be pretty much as I was before. I hope that for you, there will be steady progress until you are able to enjoy eating again.
Joanna (Give me three wishes and you know what disease will be history in one big hurry!)

I would say even for standard radiation, the side effects depend very much on the dosage one receives. I have a friend who received 35 rounds of radiation treatment alone for stage 2 orcal cancer. He finished the radiation six months ago and he told me that saliva is coming back and he has never had a sore mouth. Chemo does not leave long lasting effect but concurrent treatment of chemo and radiation worsens the side effects of the latter. We have to adjust our mind to accept them as a part of our life.

Karen stage 4 tonsil cancer diagnosed in 9/01.