Hi - I was diagnosed with tongue cancer 3 weeks ago and had a partial glossectomy 2 weeks ago. Surgeon says it was very early (and small) and MRI is clear. I haven't told my children or sister as I hope and want to believe that I will be OK. My children have had to deal with their father (exhusband) being unreliable and I don't want them to worry about me too. Maybe also I am still in denial.
My surgeon doesnt think neck dissection or RT are needed. I'm afraid of having more treatment and I'm afraid of NOT having more treatment. These days I'm just afraid.
My speech is improving but today my tongue is tingling a lot - is that "normal" after surgery?

Patricia

Hi Patricia, I didn't have surgery on my tongue so dont have an answer but welcome to the forum. Glad they caught it early, bonus not having to have RT too. Hagg.

Hello Patricia

I had surgery for SCC of the tongue last October. Like yours mine was caught early - I had a partial neck dissection but nothing was found. I lost about a third of my tongue on the left hand side. Mostly the area around it is quite numb but I do get tingling sometimes - usually in the evening, like now. Both the numbness and the tingling are quite easy to cope with, though I tend not to notice them during the day when I am busy and thinking of other things.

It is very early days for you. As Hagg says it is good they caught it early, as they did with mine. Psychologically I was very shaken for quite a while after my op, but things do improve.

Very best wishes

Gwyn

Thanks for replying. Its been a lonely few weeks so I'm glad I found this site. patricia

Thanks for the encouragement Gwyn. I am in a funny place where unlike some on this forum my surgery has been fairly minor - less than 1/3rd of the tongue, am almost back to eating normally if I am careful with the numb tongue and fairly intelligible yet I am scared that I didnt have enough treatment and my good chances will be smashed by occult secondaries. As you say its early days. Thanks again - I was feeling so lonely till tonight.

I am glad you found us Patricia. I didn't find the site until a couple of months after my op (and four months after my diagnosis). I wish I had found it much earlier - it would have been such a help to me. Everyone is so friendly and supportive and someone usually knows the answer to any questions.

However small a cancer is it is still a cancer with all the fears that brings. As I had to wait nearly two months for my op I imagined the cancer was growing and spreading all through my lymph nodes and around my body - in fact when they came to operate the cancer was actually smaller than they had thought and, as I said, my lymph nodes were clear. Like you the only treatment I have had is surgery.

I can understand you not wanting to tell people - we all have to do what feels right for us - but that is why it is particularly good that you have found this site as there will be times when you need to talk about your worries or ask questions and there will always be someone here for you.

Take care of yourself

Gwyn

hi patricia
hope you are recovering well. i have had two cancers of the mouth within 7 months of each other the first one was small and required a partial glossectomy and skin graft the second one required much moor extensive surgery tumour from floor of mouth and radical neck dissection this was also a small cancer but the complications from surgery have been the worst it has left me with a palsy in my arm and lymphodema of neck surgery was 8 months ago and i am recovering well now. do you have much support from mcmillan nurse or head and and neck support nurse? just feel free to ask any questions and someone will always try to answer
big hug bev

Hi Patricia, I do feel foryou.
I had mouth and neck Cancer but they had to remove part of my tongue which went black, Its not easy getting used to it and I curse everyday I have to eat with a teaspon the only thing can get in my mouth.
But it does get easier I go out sometimes to a Restaurant and dont worry what peoplethink.
I just think am entiltled to eat as I like and its beter than using my fingers to eat

keepus posted

Paul

Just wanted to say thanks to you all. Despite your own problems you took the time to think of me. I was reading the posts on the forum before I had the courage to add my first post- creating a profile and posting a message meant I really did have cancer

Thanks for the hug Bev - much appreciated.

Here's hoping we all keep well.

Patricia

Dear Patricia,
Hi. I always begin my introduction with an unwelcome note as I do not feel anyone should go through this dreadful illness. However, if one has been through it and needs any kind of support even if its just something to make one smile or lend a ear or help out in any way, I know everyone here will be with you all the way. As Hagg mentioned he may not have had a similar experience and neither did I , but that in no way means we will back down from being your friends and will do all to help you in anyway possible.
Take care and lots of love,
Ananth

what a lovely posting ananth you seem very mellow this evening you have such a way with words its great that we can type these words even if we cant speak them very well with bits of tongue missing ! it is so good to have a laugh and a joke xx

Dearest Bev and everyone....

I do not think that its an issue of not being able to make yourselves understood - its normal.Its only the people who cannot understand you too well are the ones who are not used to normal speech. So - dont ever say that you are unable to speak very well - its just that they cannot hear too well.

I get into these pensive moods at times and may sound a little mellow - but thats just a way of not scaring off all you lovely ladies - this time Patricia, in particular when you realsie what a nut I really am!!!!!

Love you all,hugs and xxx,
Ananth

Hi Patricialouise


Welcome! Welcome! I'm sure you'll find this a very helpful site, and the people are really nice.

I was diagnosed with SCC Stage 2 N0 M0 and had a hemiglossectomy with free flap resection (using part of my arm) three years ago, and I still have tingling sensations in my flap, although it has diminished. Spicy food can still bring on the tingle, though. You didn't mention a resection. Did you have one?

My doctors told me from the outset that they would be doing a modified neck dissection and I'm glad they did because it confirmed that the cancer had not spread and that I didn't need rt or chemo. (My doctor looked shocked when he read the path report to my parents and me.)It's not a pleasant surgery, but it can bring peace of mind.

My family has been in on my little adventure since the beginning--they even stayed with me in the hospital. I can't imagine not having them involved.

Ananth is so right--if you lose your sense of humor, you're freakin' doomed. Bad jokes helped me come to terms with all of this fun stuff. I've actually been waiting for someone to ask about the scar on my right forearm (birth place of Flappy the tongueflap). My dream response is "I'm a cutter but I have no patience--I had to get it all done at once." So far, no one has asked.

We've all been down this road, so you've got plenty of traveling companions.

Julia

Thanks for the warm welcome Julia. I didn't have a resection and no plans for neck dissection either which is freakin me out a bit. I agree with Ananth too - some bad jokes let the pressure off for sure.

My gorgeous sweethearts, my friends Paul & Hagg,

Now that we all have welcomed Patricia with open arms, do you feel I should begin playing the "flirt", the "nut case" or the "Immortal". I love playing the "flirt" as its women that makes this world go around and I am glad I am a part of it. I found this nice poem and thought it would be an ideal one for everyone to go through. It known as.....

......... THE SIZE OF YOUR HEART
It isn't the size of your house as such that matters so much at all
It's the gentle hand and its loving touch,that make it great or small.

The friends who come and the hour they go,who out of your house depart,Will judge it not by the style you show,But rather by the size of your heart.

It isn't the size of your head so much,
it isn't the wealth you found that will make you happy—it's how you touch the lives that are all around.

For making money is not hard—
To live life well is an art -
How people love you, how they regard,is all in the size of your heart

So... Live life the way it should be - with a big heart. ( a bit serious - but I'll slowly get down to the funnies!)


With lots and lots of love to the guys , the ladies (Oops! the girls) get the love and their kisses and some great hugs
Ananth