Hey Max, got my surgery date - October 11, so I will be sure to keep you posted on how things went when they spring me (they say 10 days - 2 weeks in hospital).

My family is arriving later this week, I'll let you know how that goes too, lol.

Hi Tina, you've got 10 days to go! My appt is on Wed so will probably get to know some more info about myself too. Keep posted how things go and good luck!

Right back at ya Max.

Hi guys. Just shocked to see younger people like me with this disease. I was 29 when diagnosed!

Tina and Max, I just went through all this stuff last december (2011) and here I am. My life is completely normal now.

Oh yes, I have some difficult with some words in my language (portuguese) but in english my speech is pretty normal. I can�t say "vidro" in portuguese, but i can sat "drowning" on english.

So, I�m available to talk about it. I had 2 surgeries (partial glossectomy + neck dissection) and I can talk about it if you want!

If you want send me a personal message and we can chat on facebook, ok?

Good luck with your appointment tomorrow, Max!

Hello, I had my appointment today and my surgery date is 15 October.
There will be two surgeries: 1) tongue and 2) neck dissection.

Following my scan last week (x-ray, CT, MRI) they said they were good enough and the desease hasn't spread.

Apparently they could see some glands were swollen (if I recall correctly) and they think they might need to be removed as well.

They said tongue operation would take about 30 min and neck dissection would take about 3 hours. So they estimate it will be around 4 hours in total. They think my discharge date will be on Thursday, so I will have to stay in hospital for less than one week.

I requested a second opinion, so there was a radio therapist on my appointment. They both think that I should go for surgery and they think no radiotherapy will be required. They said I could oct for radiotherapy only but they reccomend having an operation.

In addition, I had an appointment with a person who discussed with me my speech prospects. She think I will not have any major problems with my speech. She said that usually people in this kind of situation would have a problem with the sound "s" and possibly sound "l". (I think someone mentioned the problem with the sound "s" before). In general she said I would be fine and it might be that people who know me well enough would notice some speach change but new people who I get to know may not notice anything at all.

I asked whether I will have any problem with tasting the food. They said I wouldn't.

So in summary they will remove part of my tongue + some lymph nodes and will have to open my neck to see the glands. They anticipate that I will need no radio and no chemo at this stage.

I asked what stage of my cancer is. They said they think it is T1N0M0.

I have done ECG and blood tests today. I suppose it's pre-surgery assessment.

Any comments are more than welcome.

Thanks

Max

Max, glade to here things are moving along for you. I too had tongue surgery last year and for the most part speech was fine after a week or so. The down side is a year later the entire left side of my mouth is still numb so no eating on that side and there is still a metallic taste in mouth most days. But considering what was done, not to bad. Also had neck dissection August 2012 to remove a tumor and 35 nodes. The recovery was not to bad but be prepared for neck, jaw and ear pain afterwards. An ice pack will become your new BFF. Hope all goes well for you!

Good luck... T1NOMO can change very fast particularly if you have an aggressive cancer - they can tell you this after the final biopsy on the removed tissue comes back. I was T2NOMO at dx and by the time I went in for surgery I had one lymph node involved (we're talking 7 weeks) and mine was a well differentiated (slow growing) cancer. Therefore. Post op keep a close eye on your mouth, and neck and if something doesn't heal within a certain amount of time, make your ENT aware of it. And if they feel chemo and rads is not necessary keep a super close eye on your nodes, neck and mouth. take care.

Max,

You came to the right place for info. I can give you some info but we are all different.

I think my tumor is like yours, on the left side and no nodes involved.

I can't see where they took the tumor out. My tongue doesn't look any different. Where I had the ND you can't see the scar they cut in the crease.

I have trouble with my "s" and if I talk too fast my words run together. If I talk too much I start to slur my words and my tongue hurts.

As far as food if I eat chocolate my tongue feels like it's doubled. I asked my surgeon when I went for my CT Scan 2 weeks ago why? He told me they cut into some nerves some food will not taste the same. With me it's mostly milk products.

I was in the hospital for 2 days I wanted out. I was on liquid Roxycodene for 2 weeks and if need then on to tylenol over the counter.

Scar tissue might bother you afterwards if it does (neck) massage it. I have scar tissue in my tongue a small lump. When I felt the lump with my teeth I called my surgeon immediately scared me. I went in to see him he took a look felt it and told me scar tissue. Since then I've had 2 CT Scans, only scar tissue.

That's all the info I can share with you. You'll be fine, before you know it it will be over. I was scared too just like you your imagination runs wild.

Take care keep us posted.
Connie

What nodes are they taking when no nodes are indicated cancerous in your Stageing?

Where on your tongue is your Primary?

Have they tested your slides for HPV?