hey
i had what i thought was an ulcer on my tongue way back in March (i think). my GP was concerned and sent me to an ENT who (after a course of antibiotics failed to cure it) took a biopsy. painful stuff that. he missed anything that may or may not have been there at the time (late June) and we ignored it until October when he had another look and said he wanted to do another biopsy.

I went elsewhere for a second opinion (wasnt keen on the biopsy!) and while waiting for that appointment had a regular dentist checkup. he took one look and organised a specialist oral surgeon to have a look that afternoon. A biopsy was scheduled for the following week (can't escape some things huh?!)

although he took a bigger sample, it wasnt quite as painful, but the pathology wasn't quite as good.

the result was a stage 2 SCC on my left oral tongue.

MRI's, CT's and a camera up my nose and down my throat show no spread elsewhere.

My surgeon is confident he can remove the entire tumor when we go in for surgery next Monday. He's taking a fair amount of tongue so it would be great if he can get the whole tumor too!

Aside from a rough first day or two after finding out it was cancerous (lost my dad to cancer when i was 10 so my family carry a bit of emotional history there), i have managed to stay positive about what's around the corner.

not without awesome family/friends support of course...

peace to you all
jp

sorry to hear about your ordeal but welcome to the forum. this is a great place to come for a wealth of knowledge from others that are there and/or have been there.
it sounds like you have a great support group around you at home, u will need them.
just take your recovery one day at a time and hopefully before u know it, this will be a fading memory.
good luck and let us know how ur progress/recovery is going.

Kia ora to a fellow antipodean. I had my surgery at the end of October. They took a fair chunk of tongue - something that horrified me at first. Now I'm used to the idea and have found that it is not so uncommon - partly thanks to this site.

Moreover, my husband was having physiotherapy last week with a woman he had known for some time. He told her about my "hemiglossectomy" and reconstructive surgery. She had had the same thing when she was a young mother! He then thought he could detect a very slight speech defect - that was in retrospect so really doesn't count.

My advice is that you should enjoy your food and drink while you can before surgery because you might be on mush for a while afterwards.

All the best for your surgery.

thanks to you both for checking in :o)
am definitely enjoying my food at the moment! have two big dinners planned for this weekend!

Hi Jp, welcome to OCF. The absolute best place to be when you need friends and information. My husband has/had (still waiting for more tests) scc which started like yours. Only he neglected to go to a doctor until it was in the advanced stages. But so far, so good for him which I'm extremely thankful for. Glad you found us and keep your positive attitude, it will help you in ways you will never imagine. Good luck with the surgery.

Wendy

JP,

Welcome to this site. Use it often.

Did they mention radiation post surgery. Oral cancer that starts in the tongue is particularly aggressive.

As was mentioned above eat eat eat eat and then eat some more right up to the time when they say don't eat.

JP,

Listen to David, he is wise. Eat, be merry and by all means do not underestimate this cancer, you may only get one chance to knock it out so make sure you are getting the best possible medical advise/treatment available.

Good luck and eat!

Eric

JP,
I second everyone on here. You have a found a great place to get help. We are here for you and each other. I had surgery in October to removed a portion of my tongue and am now doing rads and chemo to ensure it doesn't come back a third time. Cry, rant rave, and vent all you want to. Yes, eat to your heart's content while you still can.

JP, As all have said, you have found a great site. My diagnosis was much like yours. I had radiation and chemo which ended 7 months ago and I feel great now. Good Luck.

Welcome JP, lots of great advise here, great friends too. Davidcpa was correct about the rad and chemo. I live in southern CA and I think they almost will always follow surgety with radiation. Check with your oncologist.

We are all with you

Steve

thanks again guys...

they're confident of getting a clear margin when they do the surgery. also doing a partial (i think) neck dissection to remove my left lymph bits and pieces. My surgeon says if they get clear margin (tongue) and clear pathology from the lymph nodes then they will prefer not to do radiation cause i'm still kind of young (32), and you only get one go at being zapped.

meeting the plastic surgeon on friday so will get the lowdown on how he is planning to turn some of my wrist into some of my tongue!

best,
jp

Have they confirmed through a biopsy that you have nodal involvement? If not I would not be inclined to do a potentially unnecessary ND especially at your young age.

It is also not necessarily true that you can only be radiated one as we have had several members here get it more than once and some even to the same area.

These are just my opinions and I am not a doctor of any means.

not confirmed yet. I was unsure about that too. will do some more asking, thanks for your thoughts on that.

JP,

We have quite similar situation in that my primary is on the left side of the tongue, and it took me also about 3 months from what I also thought was tongue ulcer to getting biopsy results confirming SCC. I did have nodal involvement, however, and underwent ND and total glossectomy, per my signature.

Regarding turning your wrist as a potential future part of your tongue, you may also want to bring up with your doctors the possibility of getting tissue from your thigh, like in my case (left thigh) which was preferred, aesthetically, over getting tissue from my forearm/wrist. I have no regrets with this choice, but there might be other reasons in your case for the wrist.

Jojo

thanks for the advice Jojo
I met with the plastic surgeon yesterday and he decided he wanted to take it from my upper arm just above my elbow.
he said better skin to work with and bit bulkier. i'm not fussed about how things will look, so i've given him free reign to take it from wherever. Whatever bit gives him the best chance at giving me chance to speak reasonably normally (hopefully sing normally!) and eat and all that stuff.

was a fair reality-check of a day though i have to say.

anyway, thanks again to all who dropped in with advice/well-wishes....i hope christmas day finds you all eating some tasty food and sharing the day with good friends and family.

peace
jp

JP,
First of all welcome to the OCF Forum.
You have already discovered how valuable it is for getting helpful advice from those who have experienced OC as either patients and carers.
As you can see by my signature I had the flap from my wrist and while it is a crater that I refer to as a shark bite if asked, it does not bother me anymore when people see it and look puzzled.
Just one thing re taking the flap from the wrist is that there is little hair and even though I had some growing initially I think with time it rubs off. Will look at my mouth again in the mirror shortly
Someone mentioned the thigh and I see yours will be above the elbow. Suspect it will be from the inside also which would not be too hairy?
The very very best wishes for the operation on Monday.
Where are you in Australia?
Gabriele

Hi Jon,
Good luck with your surgery.�

As you can see from my signature, I was a Stage I with a neck dissection.� No chemo and no Radiation. I am very close to 5 years.

Hi Jon and welcome aboard our slow moving express special of surviving. I will taste Christmas Dinner if they have some good home made dressing with potatoes and dressing. We musn't forget the home made pie with well cooked apples. It might sound strange, but with this mouth, apples have to be almost sauce to be edible. Merry Christmas all. Notice I didn't say Happy Holidays!!!!I celebrate for Christs birth not some idiot's misery he trys to shove at us. JIM

hi Gabriele

sorry i didnt see your post earlier, so replying now!

yup they went for above elbow, but on the lateral (outside) of the arm along the bicep muscle. PS said best tissue to work with there, and will give me some bulk in my new tongue.

you might have spotted one of my other posts about the nerve damage i've had as a result of the graft. annoying, but slowly getting over it i think. still not able to sleep without painkillers because of it though which is a bummer.

my arm not very hairy where they took it so i might get lucky and not get a hairy tongue!

im in sydney also, was on the northern beaches, but moved out of my place back to mums (inland a bit!) before going in for surgery. staying here till i start working again regularly.

cheers
jp

I, too have just been diagnosed, having an MRI Friday, and scheduling surgery within the next few weeks. I appreciate the advice to eat, and I am going to the fridge for some ravioli as we speak. I have already lost 20 pounds because of the ulcer on my tongue, so do not want to lose too much more. Proud to weigh what I did when hubby and I met 18 years ago, but unfortunate that it is due to SCC.

Barb

I, too remember the sting of the biopsy, and the torture of the second one. I recall driving home and the anesthetic wearing off, and the promise to any higher power listening, that I would do anything to make the pain stop. I finally pulled over, popped two advil and rocked in my seat for 10 minutes.

That's when I decided that the rest of the treatment will not ever be as bad as that, and so far, It's good. I will take whatever life throws at me, one day at a time!

Barb

Barb,

My only advice is to eat all your favorite foods now and often until the day of surgery and don't worry about fat or calories. Have a pizza for breakfast if you want to.

BTW I got 5 opinions before I settled on my Tx. Not saying that's what you should do but not saying you shouldn't get another one or two either. Just consider it.

Hi Barb,
Welcome aboard here you will find your are not alone, you will find advice..(from everyone)
But I'm alittle concern for you, you said your not eatting. I recommend you get all the calories you can right now before your surgery and treatments...If you lose to much weight they will place peg tube in belly. Try eatting high calorie foods, force your self.

While are they taking so long to do your surgery and your testes??

Isabel

JUst eat until it feels like it might come up all over you nice clean floor.LOL Floors can be cleaned but this weight sure as heck is hard to put back on. My highest weight from 220lbs is now at 164. m I weighed 174 when I turned 17 and was a senior in high school ready to graduate, so I will settle for the 174 again. Life can be tough Barb, but you will beat this . Tell hubby to enjoy his secong honeymoon like the one 18 yrs ago. LOL

Hi Barb,

Sorry you have to join our little group. I agree with the others and eat, eat, eat! Anything your little heart desires. I wish I had listen to them a little bit more on that, I lost a ton of weight.

Welcome and know that we are here for you!

welcome barb...and happy birthday.