Hi everyone. I'm living in France, and have just recently been diagnosed with tonsil cancer.

The plus sides, had a thoracic-abdominal-pelvian scan which showed nothing else, an endoscapy which ditto, a further thoracic scan ditto, all sounds positive.

However, the neck/mouth scan stated there was a tumour on the tonsils of 2cm by 4cm, a necrotic gland (the lump was what started the investigation) and that there were lesions on the base of the tongue. My ENT specialist just said oh hmmm well maybe, and the oncologist - radiologist - also didn't seem to think the tongue was a problem. I was recommended 7 weeks radio therapy plus 8 weeks erbitux, no op. For various reasons we got me a 2nd opinion with an oncolgy-ENT specialist at a teaching hospital here; this specialist (really very well known) took one look and said oh, it's on the base of the tongue, plus anyway since the gland is necrotic, it won't respond well to radio therapy, you have to have an op., including removal of the right side of the base of the tongue with a graft. Let me stress, he was absolutely great, and I really feel high confidence in him, he explained everything to me very clearly, and my instincts tell me he's right. (But hey, what do I know?)

I'm waiting to hear back from their staff meeting for their consensus opinion, Wednesday morning, meanwhile I'm absolutely petrified by the thought of the tongue operation. I'm also worried about erbitux, I can't say that what I have read about it is wildly reassuring.

Any positive feedback on this tongue operation and on erbitux, and just generally lots of virtual hugs, would be really reassuring, thanks.

Oh and - since I'm in France - I havn't found one, but can anyone find a similar organisation in this country?

Thank you all

Re-hi lol - I have just found the section about treatments etc and am reading up on erbitux, thanks

Hello Moptop
you said you are in France,are you french or are you an expat?If you are just living in france would it be possible to come to the UK for another opinion.I really dont know anything about France and their track record in treating oral cancer,although the treatment protocol sounds like ours.You are fortunate to be offered Erbitux as it is not readily available here,but it is not usually the first line treatment of choice rather saved till other options have been tried first.Perhaps when you have more information we will be able to help more.

Hi moptop,

There's a guy living in France who used to post here (haven't seen him around here lately) but who maintains an up-to-date blog. He also had tonsil cancer (as did I) and so far his treatment has been a success.

Derek's Blog

He has several links to other blogging cancer patients. One in particular, Ralph's Tonsil Cancer, was extremely interesting and I wrote to Derek telling him how much I appreciated his site. He replied very graciously and seems like someone you could ask for specific info about treatment in France.

I believe he's an American, but am not totally sure about that.

Oops! Just found a post that he put in the Survivors forum. Here ya' go:

Derek's thread in Survivors

Best of luck to you Mop,

Mimi

This message has been edited. Last edited by: Mimi McC,

Hi, cookey and Mimi. Thank you both for your answers.

Cookey, I live in France - I don't know about coming to the UK for another opinion, I've thought about it, but - things in the UK seem to me to take a very very very long time, whereas here they usually aren't too bad - but I will try to get more complete information here.

Mimi, I am in the process of running through Derek's blog, and also will pick up the various other cancer blog links he gives, that is really useful (and of course, survivor info is goooooooooooood!!)

Thanks!

Dear Moptop
Waiting is maybe one of the worst parts of having mouth cancer. Next Wednesday, have your doctors explain precisely to you the operation and further treatments. Do not keep any doubts for yourself.
Surgical operations are often the fastest and safest way to cope with tongue cancer. I hope everything goes well with you.
Please keep in touch

Shoshana

Mop,

Shoshana is absolutely right; waiting is the worst part. Once your entire treatment program is defined you'll have an action plan and won't feel as helpless. Start writing your questions now and take something to make notes on at the appt. Please take a friend with you to do the note taking because the information is often lost between doc and patient - we can't quite 'hear' it whereas your friend will.

Someone around here, I think it was cookey (Liz), made up a list of generic as well as specific questions but I can't locate it. Perhaps she'll come back with the list or someone else will remember.

Take care,

Mimi

Bonjour Moptop, waiting is always the hard bit. You're bound to be anxious about the op too but you'll be surprised at how much you can cope with when the inner strength kicks in. Hope you find all the answers you need here. Hagg.
P.s. absolutely love France.

Hey Moptop!

The best suggestion I can give is take someone with you--for moral support, a shoulder to cry on (if need be) and to ask questions you might have forgotten or didn't think of in the first place. I know we're all big, tough grown-ups around here, but there are times when you just want someone to hold your hand.

You're not alone in this.

Julia

Hi Moptop
If worries about the speed of the NHS are stopping you from coming here, don't worry, when necessary they move very fast indeed.

I make notes of questions on a pad, they don't seem to mind at all. Better to have a written reminder that to remember just outside the door.

Hi everyone - I'm not being at my most brilliant logical best at the moment, I apologise. I just posted a long entry in general questions, and quite a lot of your very kind replies here answer quite a lot of that one. But I didn't come and look here first.

I have the list of 20 questions (thanks Mimi) (oh god or was it cookey), I am taking that with me tomorrow but I think tomorrow I'm only seeing anaesthetist. So my questioning time was on the phone this morning, I guess... I did pretty well, all things considered.

I do get the 'we don't hear' bit. My partner is coming with me tomorrow, but actually he's probably as much in shock as I am if not worse so, I will have to do the writing myself!

I AM strong - but my God I do need my moments of crying right now. Today the dentist got it.