carcinoma in situ of the tongue

It has only been 16 days for me..tongue just slightly numb and taste buds not affected. I'm actually getting hungry. Was able to eat a tuna sandwich and also peanut butter and jelly. Trying to be careful as hoping to keep off some of the weight I lost. Glad you're doing well.xx Carolyn
Been thinking about you and wondering how you are doing since it has been quite some time since your surgery. I have been pretty good..never back to perfect but tongue is not bad. A little concerned as have some soreness down on the mucus membrane under tongue. Doesn't look like anything but how knows. Don't like any kind of soreness but that area has always had some discomfort when I manipulate my tongue as since the surgery. Think it pulls on it. Back in Florida so will go to my oral surgeon here and let him look at it. Will let you know
Hi, good to hear from you. I have been thinking of you and kept meaning to get back on here. I had my 30 week check and all is apparently as expected. Go back again in March. My tongue is still sensitive and still feels like I have bitten it or burnt it. I pay for it if I eat spicy food but still do it ; ) I am paranoid about the other side of my tongue now, feels strange but can't see anything and surgeon said there is nothing but I am keeping a close eye on it. My neck is still very tight sometimes, especially after sleeping and looks swollen sometimes but scar has healed well. Just taking each day as it comes really. Work has been crazy, so busy with my little class (mostly boys) so that keeps me from reflecting too much on myself. Look after yourself and let me know how you get on at your oral surgeon. Best, Janine x
Thanks for writing back. I made appointment with the oral surgeon to look at my mouth. Will see him next Tuesday. I'm really nervous about this. Reminds me of the first time when I had the sore tongue only this time it's not ny tongue. It's like the membrane under my tongue near back tooth pulls causing soreness. I'm praying it is not a new cancer as if it is that would be very bad that after all that surgery that showed no cancer here it is. I will not let my mind go there. I'm going to pray and hope it is just something related to surgery. You know I haven't worried about it since I got a clear bill of health and I'm just so sick of having a sore mouth. Couldn't be in a worse place. Well say a little prayer and I'll let you know. And don't worry about the other side of your tongue. I don't think one thing has anything to do with the other.
Stay well,

Carolyn xxoo
Hi Janineem,
I'm doing pretty well right now. Trying not to dwell upon it and hoping it's nothing serious. I have been rinsing several times a day with salt and hot water. Is soothing and stopped moving my tongue in a way that made it hurt. Won't know anything until Tuesday and I'll write and let you know. You know my husband passed over two years ago and just started seeing a really nice man who lost his wife. He's a retired middle school principal I would love to be able to get to know him better and live a little before my life comes to an end so I'm keeping really positive. Carolyn xxoo
Hi Carolyn

That is really great news, so happy to hear that everything is looking good and your pain is 'normal' or your 'new normal' as my surgeon keeps telling me. I hope you celebrated. I am glad you have met someone nice for some companionship, I wish you all the best.

I had my tongue checked out by my dentist as I was there anyway (turned out I had to have a root canal today but after tongue cancer that's nothing!) she couldn't see anything at all that looked abnormal on my tongue so that was reassuring.

Off to nurse my root canal. Thanks for sharing your happy news. Take care of yourself, Janine x
I know. We just can't get away from pain in our mouths. I have to have a root elongation where they have to expose more of your gum as gave small cavity under crown. That is so going to hurt and costs $500 plus $60 for X-ray. Hope your mouths feeling ok. Carolyn xxoo
Lynkidd and Janineem...I have read your entire thread. So interesting and so similar to my husband's dx...gave me great hope that all will be ok! My husband has had an on and off again irritation to his underside of tongue for some months now. He went last week for a biopsy from his oral surgeon and it came back today as severe dysplasia! I am trying to stay calm and need to keep him calm but I don't know what to do! We have to go see his oral surgeon on Saturday and he said he would talk and explain and give us some names of ENT doctors to go and see. Even though it's severe, it is STILL pre-cancerous and hopefully they can just get rid of it.
Thinking about you and hope all is going well for you after your first year. Saw my surgeon in May for check up. I have a soreness on the mucous membrane under the left side of my tongue below surgery. Almost like that feeling when they stretch your tongue out to do an exam. He said wasn't concerned yet have to go back end of July. It still bothers me and I'm very concerned as I have read how so many stage 1cancers are back in a year. If it is I don't know what decisions I will make. I've decided to enjoy July and stop reading all these upsetting articles. You are young..I do hope that you are well
Carolyn
Hi Carolyn, apologies for my delay in replying. I had my husbands family staying and it was pretty intense Sigh I am doing okay thanks. Surgeon was happy with me at my one year anniversary check up. I am still struggling emotionally with it all to be honest, been going through a bit of depression (which isn't me at all) but with my brother's sudden death and then the cancer diagnosis, I am struggling somewhat BUT, know I need to get my act together. It was a particularly awful year at work this past school year which didn't help. Healthwise, I have constant irritation where the scar tissue is - like I burned or bit my tongue and depending what I eat increases the feeling. He advised that I avoid spicy foods but I am being stubborn about eating what I want - my own worse enemy LOL. My neck area still has some nerve damage/numb areas and is tight. But, this is my 'new normal' - I would like my old normal back please! My speech is okay, my tongue gets tired if I am working and singing, reading, talking too much (teacher) and I hear a 'slur', I am not fit and have put on weight but I am working on that - it is frustrating as I was very fit before the diagnosis. Anyway, I know I am lucky and it could have been so much worse and glad to be past the one year mark. I also still read articles - I think it is human nature to be curious but yes, it is upsetting sometimes and I also tell myself not to read them (but then do). I'm trying to just get on with life, travel when I can, spending time with my boys, trying not to stress the little things. Had my 50th birthday in January - yikes! I am now on 4 monthly check ups at UCSF for the next year. Then it will be 5, then 6 etc for up to 5 years. Will be thinking of you for your next check up - try to stay positive - I know how hard that is. I don't know how I would react if my cancer comes back - I hope I never have to find out. I will be thinking of you for your check up, let me know how it goes. Wish we lived closer and I would come with you. Take care of yourself xxx

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