Dear all

I was diagnosed with tip on tongue cancer, underneath and on the left hand side and had surgery on the 14th November. My surgeon took out a big chunk but found that the biopsy had got all of it and lots of healthy tissue was removed, however he wanted to be safe than sorry. I have not had a neck dissection as the tumour was so small (3mm by 4mm) he said it was protocol not to do the invasive neck surgery for such a small tumour.

I am really very grateful that it�s been caught early but I feel like the whole cancer thing has just hit me like a truck and it�s sinking in now, I�m having awful nightmares. It�s now just a month after surgery and I have a lisp that upsets me as I�m a Counsellor/Psychotherapist who was attending interviews for jobs up until this happened. I get so scared when I speak to strangers and can�t ever imagine being given a job speaking like this, especially as the jobs I�m qualified for involves advocacy, public speaking and campaigning.

I�m being referred to a speech therapist and a clinical psychologist by my amazing Macmillan nurse (UK special cancer nurse) so I really hope they can both help.

I really don�t want to fall into the victim trap when I�ve been so lucky and others aren�t but I feel so awful. Can anyone give me any hope for my lisp to improve due to a shorter tongue and less of a tongue down the left hand side, and also if any feeling will come back in my tongue? � the doc won�t say either way if the nerves will regenerate or my speech will ever be the same, humph!

Thank you, Kate

Hi there and welcome - I had a similar tumor- it was larger than yours and initially after 2 cts and an MRI - determined to not have spread past the tongue - wrong!!!!! I could feel a node pop up prior to Surgery but it didn't matter as my dr told me he was removing 40 nodes from the get go. thankfully he did and caught it with only one node involved.

For this type of cancer (non HPV related) the usually remove them as a Precaution.

I don't want to scare you just make you aware of two things - your tumor was very small so chances are you're clear. But do keep a close eye on your neck just in case anything pop up. And if it does hightail it back to see him immediately. (if you are very young this is even more important as this cancer tends to be more aggressive in younger people.

Secondly your speech will improve once you've healed. I had half of my tongue removed on the left side and a new piece grafted from my wrist then they radiated it... And now - almost 2 years out you can barely tell - things will improve. Hugs and welcome

Welcome to OCF! Recovery can take months. At this point you still have some swelling so it will alter your speech. Try seeking out a speech pathologist. They can do wonders in helping you to get back to normal.

Best wishes!

Hello, thank you for that, you've given me some hope.
I guess there is still a little swelling at the front left hand side tip to go down yet. Its S�s and Th� that are rubbish right now.They do say the tongue can get stronger. I have been reffered to a speech therapist so fingers crossed that will help in the new year.

Thanks for that. I'm being checked every month and will have all sorts of scans regularly. Don't worry I'll be the first one down there if my neck feels swollen. Fingers crossed hey.
I do trust they have done the right thing with the neck, I think they are doing it this way more and more now for small tumours with clear margins. I�m 32 so hoping that if there is a stray cell then my strong immune system will fight it off.

Hi Kate and Welcome to OCF!

As many on the board would say, �glad you found us, but sorry you had to!�

I also had tongue cancer � right lateral side � and have had 4 surgeries to remove part of the tongue each time. After each surgery I did have problems with speech and still have some problems when I talk a lot or I�m tired, but for the most part my speech is pretty good. Definitely go for the speech therapy. I didn�t as my doctor didn�t recommend it, but I had been to a speech therapist as a child so I did some of the �tongue exercises� which seemed to help. You can start my just moving the tongue in circles, side to side, and try to curl it. I�m sure when you see the speech therapist they will provide better instructions for your particular situation.

I also did not have a neck dissection because my tumor was small, but did have radiation 8 months later (long story). I did have a recurrence a few years later (same location), and at that time some of the doctors recommended a neck dissection but again did not have one. During my �cancer journey� I consulted with 4 surgeons (ENTs) and 2 radiation oncologists at 4 different medical facilities. I did my research, asked a lot of questions, and used the resources on the OCF website and the OCF forum to help me decide.

My surgeries were done by 2 different ENTs and I continue to see both of them regularly. Thanks to the after effects of radiation I am having some dental issues, so I also see a prosthodontist and a periodontist, both with experience with oral cancer patients.

So you are doing the right thing by being checked frequently and I�ve found that I knew something was wrong even before my doctor did. Dealing with a cancer diagnosis is a big and affects you both physically and mentally. Seeing a clinical psychologist is a great idea.

I wish you the best!

Hi English Girl, i'm a brazilian girl, almost the same age. My case is pretty like yours except i did not drink or smoke! I also had a small tumour. My doc which is awesome said that a neck dissection would be done if the depth of tumour was larger than 0.3 cm. Mine was 0.6. So depth is what matters not the size.

Other thing is the grade. Your tumour was well differentiated?

So, the good thing is that i had a neck dissection but none of them were positive.

Hello Susan
Thank you for the tongue exercises, I've already started on them so I can get a head start for when I see the speech therapist in the New Year. Another chap also said the tongue becomes more flexible and that he can stick his tongue out further than he could after surgery.
I'm sorry you have had to have four surgeries but very glad you avoided the neck dissection which I've heard can have awful complications. A lot of people in my life (family/friends etc) are putting the frighteners on me about not having had the neck dissection and it's really quite upsetting and makes me think of death every day. I have a great team at my hospital and it was a big group of experts that were all in agreement about not having the neck dissection. I should trust them as they do this every day and know my cancer unlike others. I guess you also had these fears but your doctors seem to have made the right decision.
Thank you for replying Sue.

Hi Brazilian girl

Oh that�s a good question, I'm not sure if my tumour was well differentiated, I'm seeing my Dr again in January so I�ll ask him. I'm sure it was otherwise I guess he and his team would have done the neck dissection.
How is your speech? Has it got better over time? Was your tongue shorter after surgery? Is it feeling a bit more normal? Sorry about the questions haha.
I think that is why I'm lisping, or it could just be that it's only just over 4 weeks after the surgery.

Thanks for message by the way.
Kate

Hi Dear, well my speech is about 90% ok after one year. I still have some sequels in some letters. For example, the hardest word for me is VIDRO, which means GLASS. vidro is in portugues, and i must say that when i speak english people barely notice anything. i can say DROWNING perfectly but VIDRO goes out a bit stuck.

Well, one year ago I was removing that bothering NG tube. I tought i won't survive but i'm here. 2012 was harder for me because i delt with all this cancer paranoid and in the same year i lost my father to lung cancer. So you imagine how hard it was...

But everyhting adjusts itself.

What about your speech?

Hi Kate
I had similar surgery to you. And was 32 at surgery.

A little over a third of my tongue was removed. I was told not to expect too highly in terms of speech.

At first i couldn't string words together and didn't expect to ever properly get back to all aspects of my work (occasionally ran training sessions, and sang as well in my "other" job).

It all came back though, and each "first" (first training session, first gig etc) was awesome.

So, be patient, your body will sort itself out and you'll have a bunch of great moments to look forward to!

Best
jon

Kate,

My story is similiar. Stage 1 SSC, 1.5cm .3cm deep. I too am concerned about my speech returning to normal, but one week post op, its getting better every day.

What is the status of your recovery?

Sincerely, Andy

Hi Kate,

Aother similar story, I lost just over 50% of my tongue. I have been back to work as a lawyer, in a courtroom full time sine a month after surgery. I say to people that I started off sounding like the godfather, then like elmer fudd with a lisp and now I have some slight issues with a prolonged "s" and some "r" sounds. I'm working with a speech therapist to correct those.

Practice, practice, practice. I would sing for an an hour every night at home to work on enunciation and getting words together quickly.

You'll be fine.

braziliangirl

In a post somewhere, can't find it, I ask what "positive closure" meant and you responded with an answer. It turns out that your explanation was what I thought it was and recently heard about. Previously I had only heard about "flaps" (use of skin from another part of the body)to fill in the portion of the tongue removed. Did your Doctor ever propose using a flap instead of positive closure. If so, why was positive closure used instead of a flap. It seems to me, someone that knows nothing about it, that positive closure would be better. What do you think.? Do you have an problem with "aspiration" (I believe that is the word) where fluids etc. can go to the lungs (very dangerious)instead of the stomach? I have just completed a second rad and chemo treatment for a recurrence. If it did not work, I am afraid it may not, then surgery will probably be necessary. I will know some results this week so I am starting to think about what options I may have.

Thanks for any time you have for explanation.

nocam