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.

Hi Danny,
I just completed 33 rounds of radiation today and I still have my voice and the pain is not unbearable. My skin came through it with a sunburn and not oozing and weeping -it's already peeling with pink healthy skin coming out. Typically I am consuming, orally, about 2000 calories a day. I can't see any reason why I won't be eating solid foods of some sort in a month or less. IMHO there is a world of difference between IMRT and XRT, particularly the outcome. They told me that I will also retain 2 salivary glands also. The techs commented today on how my experience was so much better than many that they treat - I really don't have any answers for that -other than faith and prayer were part of my program also.

Gary Stage III, SCC, right tonsil

Dan-Q,

Just to let you know, there are some people on the site that have survived without the RAD or the Chemo. I had 1/3 of my tongue removed, the bottom of my mouth rebuilt and a modified radical neck dissection. My lymph nodes were negative and I did not have any additional treatments after the initial surgery. That was 2 1/2 years ago. In the beginning I went to both of my surgeons for a check up every month, I'm now down to 4 times a year and all is well. If you go to the directory you can pull up some of my old posts where I go into more detail. By the way, I still have all of the confidence in the world in both of my doctors, it hasbeen that way since the day I met them. Let me tell you, that is really important.

Best of luck. If you would like to email me for more information, please feel free.

Take care.

Anne.

Hi Everyone,

Thanks for writing, at first this website scared me a little but i'm really starting to dig it, in some soft focus, after school special kind of way. Got the ct scans back and lymph nodes were a little enlarged on the right side but the doc expected that and they are coming out anyway and they will check them all then. They did notice a really small "something" on my lung and recommended another ct scan in 3 months, doc said could be anything, don't get crazy, so i'm taking that advice. I had a pet scan too (booooooooorrrrrriiiiiiing) I'll get those results next week and see what colors I am.

peas,
dan

Hi everyone,

I related to Dan's message except I am not the newbie- he is my father. My father was just recently diagnosed with Stage II oral cancer. He is having a PET scan tommorow and already had a CT & x-ray. From what they have seen so far it has not spread. He is waying his options now and the Doc's have given him a choice of radiation or surgery. The radiologists seem to think they can "GET IT" with hust radiation, my concern is if that don't work will surgery be much more difficult after the radiation. Any one out there who has had one or the other or both please let me know your thoughts on them. Thank You
PS

Hey Dan - my husband JC just had 38 lymph nodes removed and his right tonsil - what bothered him the most was the tonsil. the neck dissection was a piece of cake for him and has come thru that with flying colors - he has full range when it comes to turning his neck from side to side and that was 3 weeks after the surgery.....if it werent for the darn tonsil.....(the tonsil was clean i might add)

Dan,
I have never had surgery so I cannot speak about it much. However I can say that radiation and its after effects are a bitch. Sometimes I feel kind of like it is equivalent to burning down part of the barn to get rid of the rats. If I could have surgery that was not disfiguring instead of radiation, I would make that choice in a minute. Although the radiation got rid of my tumor and nodes without surgery or disfigurement, the swallowing problems, dry mouth, and in my case esophageal problems that I have experienced are very unpleasant and worth avoiding if possible.
Best of luck,
Danny G.

well this is it, that's every pair of shoes in the place. I'm off to pre surge now and my surge got moved up to tomorrow. it's weird feeling fine and feeling that your walking into a car wreck at the same time. wacky. i'll post again in a few days. think of me tomorrow counting backwards from 100. yipe!

thanks again for the posts, you guys really help!

dan-q

Good luck - our thoughts are with you!!

Hey Everyone,

I'm back from surgery. Talking funny and incredibly sick of mushy food, but feeling pretty well. Today was one of the first day's I was able to skip pain killers. I still need them at night but I'm guessing in about a week I should be off those things. Anyway wow, none of the lymph nodes were cancerous so I don't need any chemo or radiation which i'm really glad about. Surgery went smooth, the peak pain came a good 5 or 6 days after. My tongue was just getting covered with this kind of scab and man was it painful to rinse out. whew. I still talk pretty funny but it's coming along.

dan

Dan, Great to hear that the surgery went well and that the lymph nodes were not cancerous!! I'm so happy for you. Have they told you what's next, or will they just be monitoring everything closely, since you don't need the chemo and radiation? Anyways, I just wanted to say that I'm glad you are doing well - and good wishes for continued success in the future!

That is wonderful news, Dan! Thanks so much for letting us have something to cheer about. You should feel a little better every day from now on, and by summer it will just be a memory in your rear view mirror. Good going!
Joanna

Pretty much it seems that i'm going to have a visit every month for the next year and then a little less often each year. Personally, i'm starting an anti cancer vitamin/enzyme therapy. It seems really expensive, but I feel like I need to combat this for a while. Plus it should help get my energy back. I've had a nice conversation with a doctor who is affiliated with a vitamin supliment company who is going to guide me on all the nutrients out there that he recommends, like MGN 3 and a bunch of others. It seems a little wacky to me but I'm going for it for the time being.

peace!

dan