Hello.
I'm Emma. I'm 47 and my diagnosis of tonsil cancer with lymph node involvement was confirmed 2 weeks ago. I had an MDT at the John Radcliffe in Oxford yesterday, when my treatment plan was put to me. I hadn't expected such major surgery, from what I'd read on other peoples' blogs/forums etc.
I am booked in for a radical neck dissection to the right hand side and partial to the left, as well as forearm flap reconstruction of the soft palate, in 2 weeks.
Of course I'm glad that I have one of the best teams in the country treating me and that there'll be no further delay, but I'm really, really scared. They said they would be sawing my jaw bone and the only thing I can visualise is 'Predator'. I know the physicians will do only what's necessary and best, to treat me, but, to be blunt, I'm vain and I don't want to be covered in scars. I'm single and, whilst I wouldn't wish the worry of all this on a new partner, frankly, I wish I wasn't going through it on my own and am terrified that I'll be on my own for ever after this.
I'm sorry if this is too honest and blunt, But it's how I feel and I could really do with some reassurance from someone who's gone through it already.

Good Morning Emma,
In 2004 I had an operation to remove a cancer from my lower jaw, this involved removing a significant part of the right side of the jawbone, this was rebuilt with metal plate and bone and tissue from the left arm which in turn was rebuilt with more metal plate. all of the lymph nodes were removed from the right side of the neck.
I will not pretend that this sort of operation is a minor affair because it is not but please believe me when I say it is not as bad as your tortured mind would have you believe right now. I have said this to a number of people facing similar surgery and afterwards they have agreed that I was right.There is some evidence of the surgery on my neck but very little on my face, the main scar is on the arm but it is not difficult to keep this covered if you feel nervous about the appearance.
A Macmillan nurse will have been assigned to your case; you will find that she is a wonderful "Girl Friday" who can help you in many ways, you will need her help so don't be afraid to ask for it.
You are probably thinking that you will wake from the operation into a nightmare world of extreme pain but it is not like that. I certainly expected this and was agreeably surprised when it was not so,I only tried the self administered morphine drip once and after that I only needed the odd co-codamol.
That is enough for now Emma, when you have more questions go right ahead and ask I, or another member, will be only too pleased to help out with answers.
Please remember that there is quite a bright light at the end of the tunnel, I was 68 when I had the problem and now I am 75 and living a normal life,and have done so for most of the seven years between. A few changes, but the human frame quickly learns to adapt.
When questions come into your mind write them down and take the list with you to the next appointment, we all tend to become forgetful when we go to hospitals.
It is easy for me to say "try not to worry" and I know how difficult it is when you are on the receiving end, but give it a try.
I wish you well with the treatment,and keep in mind that this website is always "open"
Keep Smiling
John

Thank you, John, for your quick response and for your reassurance. I am trying not to worry and to remain positive, but I do get waves of panic, out of the blue.
Emma

My doctors said my cancer is T3N2C...I've worked out the T and N, but what is the C? Any help?

hmmm - I only know of TNM - tumor will refer to size - node will refer to number of nodes and M = metastisized - C only makes me think of cancer - but i do not know - any one else?

The C (as in 2C may refer to the size of the tumour) 2A 2B 2C - ascending. Not exactly sure.
I was T3C I think. It's been a while since I thought about these things

Hey, Bramble!

I think I might have found what you're looking for. I googled n2c (lower case), tonsil cancer. That brought me to advancedonc.com. Apparently, it's an indicator of how affected your lymph nodes are. According to that site, N2c is "Nodes on Both or Other Side Less than 6cm."

Julia

Thanks everyone, especially Julia...that makes sense as I do have enlarged nodes on both sides.
I'm becoming more and more concerned as new nodes are appearing every couple of days and surgery isn't scheduled until the 15th.
I did speak to my McMillan nurse who was very reassuring, but, given that a dental check up in June didn't cause any concern and now, 4 months later, I have bad enough cancer to require radical surgery, two weeks seems like a lifetime.....

But the good news is time will progress and you will get better and overcome any problems arising from radical surgery and RT.

It's 6 yrs and 1 month from my RND. Subsequently I had a great deal of RT on all sides of my neck,face,throat etc.. It was tough but 6 years later - so what.I'm still here providing for my wife and 3 daughters - these are the things that matter. Normal life - which is a struggle at times.
That's all I wanted after my recovery - normal life!
You will eventually attain it too.
Good luck Bramble

Dear me - what a poor memory! I had my rnd october 2 2004 - 7 years ago. My how time flies!

all the best Emma Tony K

Emma, the early days are really hard and if you are like me now you have been diagnosed you will just want it out and as soon as possible. I was told the reason they do such radical surgery is because they can cure it and i took a lot of comfort from that.
I also took a lot of comfort and reassurance from this site and looked at others who had been through the same surgery and could see a whistle-stop tour of where they were and how far they had come. Like the experience of tonyk.
I also had a dental checkup, a few months before my diagnosis, I also saw a GP who advised me not to loose any sleep over the small lump on the side of my neck. The first consultant I saw after being referred (due to it being standard practise due to a lump)also gave me a thorough examination and said he did not think there was anything to worry about. I was referred for an MRI to rule anything out.
I have since been advised that due to the genetic makeup of tonsils that the cancer can hide in the crypts.

Have you had an MRI? If yes then the MDT meeting that followed will take into account all they know and from this the best treatment for you, it is so difficult waiting and I think that was the very hardest part for me.
I wish you all the very best through the forthcoming days.

I meant that I'd had my last dental check up in early June and no concerns had arisen and yet, by late September I was being tested for cancer and, on 18 October, the diagnosis was confirmed following biopsy. I then had an MRI and 2 CAT scans. By the time I saw the MDT at Oxford, on 26 October, 2 more nodes were swelling up on the other side of my neck. The original lymph node is now huge and a further 2 on that side have appeared. Maybe I'm being hyper vigilant and maybe the nodes are simply doing their job of trying to make me better, but I'm scared that it's the cancer invading them. It all seems to be developing so quickly...almost daily...that's why waiting for the surgery is so scary. still, only 8 days to go...

Hi

I was diagnosed with cancer at the base of the tongue at the end June 2011 after finding a lump on the left side of my neck. By the time I had surgery in August it had spread to two other lymph nodes on the left. I was then told I may need surgery on the right hand side also, but this was deemed not necessary. Had the op and the nerve to my shoulder was also removed, but have good movement in shoulder. I was very scared leading up to the surgery. Have just finished 6 weeks of chemoradiotherapy. Being fed via feeding tube and next challenge is to start taking fluids other than water by mouth and eventually start on food given my dry mouth and that fact that I haven't swallowed solids for about 6 weeks.

Good luck with your surgery, the waiting is really difficult but not long now.

Thanks for taking the time to reply when it's still so new for you, too. I hope I will be as brave. Good luck with your eating

Well done Sue
prompt treatment really bodes well for you. I had a lot of radiotherapy and was reasonably surprised at how soon my ability to eat returned. Admittedly it had to be very moist,creamy and definitely not spicy!
7 years later I still have a dry mouth. No probs - can live with that.
My best wishes
Cheers Tony k