Just an update on my situation - I met my doctor yesterday and also my cancer nurse and I now feel confident to leave my life in their hands as both were very nice and answered all of my questions with great detail.

My MRI and CT scans are tomorrow and I will receive my results next week on Tuesday. I can't bare the wait but I have no choice.  I am absolutely PRAYING that the scans don't pick up anything nasty other than what we already know.

My doctor told me that my tumour is at the back of my tongue, on the side, (I can't see it) and I will have surgery to remove it and hopefully less than half of my tongue will be removed. They won't know until the time of the operation if they will need to reconstruct my tongue with a skin graft from my arm.  They will also do a double neck dissection to remove all lymph nodes to reduce that chance of cancer returning however, the cancer may well have spread to my lymph nodes already, the scans will tell me this.  All of this will result in a 4 day stay in hospital. Radiation is likely but not certain yet but my doctor anticipates it will take a month for me to learn to swallow, eat and speak following the operation but possibly longer if reconstruction is involved.

Whilst at the hospital yesterday I mentioned again my sore throat and my ear and neck pain. I was assured that the ear and neck pain are "referred pain" as all are connected but they looked down my throat with a camera.  This procedure was just awful! I'm no wimp and am fully aware that I have a lot of discomfort and pain to face over the coming weeks and months but having the camera up my nose was very uncomfortable! I'm glad it is now done and the doctor said she couldn't see anything that shouldn't be there but she didn't sound confident and wouldn't look me in the eye when saying it so for some reason, my mind has still not been put at rest about my throat.

My main doctor always sounds so positive and upbeat which is reassuring however, when I had my first appointment at the ENT clinic about the lump on my tongue a few weeks ago, he was very confident it was just tongue trauma. He mentioned this yesterday and admitted he got it wrong but when he talked about treatment I find it hard to believe in his confidence and positivity.  What if he is wrong again? The other doctor who did the camera procedure yesterday always sounds less confident so it's hard to read them.

However, my doctor has said I am "special" to them already as they really have no idea why I have this cancer. They say I'm too young, especially as I have never smoked and rarely drink. They don't even believe it is associated to HPV due to the location of the lump but I will be tested for this anyway. So they are a little baffled!

So that's how it is at the moment.  The waiting is awful and I'm not sure how to deal with the "what ifs" going around in my mind. I'm expecting the cancer to have spread to my lymph nodes but if it's anymore than that I know that I will have great difficulty trying to stay positive. I have a two year old daughter who is at the front of my mind throughout this and I will do whatever it takes to stay on earth with her. 

I hope my information will be of use to others in similar situations and I will keep updating as I know more.

Speak soon everyone,

Nicola

Hi again Nicola,

I have just read your update and I have to admit to feeling more and more nervous for you the further I went.

I have an idea of how you felt having a camera fed through your nose as, when I was about 18 I had a cycling accident and underwent the first of three operations on my nose.  Two days after the first op' the nurse arrived to remove the packing which I didn't realize was a long length of gauze that had been packed into my nose almost to the back of my throat. Very painful and eye watering.

The confusion must be so difficult with some people seeming confident about your case and others who can't seem to look you in the eye.  There is every chance that the ones who don't look you in the eye have just trained themselves that way so as not to become emotionally involved with patients.  Then again I may be talking nonsense, after all I am no expert.

I will be keeping my fingers and toes crossed for you next Tuesday.

Good luck.

Garf.

Hi Nicola and the rest of the gang!  

I haven't logged in here for a while (absolutely spot on what Vatch was saying) and how telepathic that I should choose today to visit, when it's the 2 year anniversary of your diagnosis Nic (I've seen today's FB posts so had no idea!).  How right you are that significant dates will stick in our minds forever.  My diagnosis was Halloween 2013 - now there's a spooky date if ever there was one!

Great to read on FB today that Vatch and Claire are celebrating Gary's 1 year post-treatment today.

Not sure if I told you before, but I've been involved recently in a Focus Group for a new study up here run by Stirling Unversity - a Swallowing Intervention Project (SIP) for Head & Neck cancer patients.  It's really fascinating and interesting and I sincerely hope it might help some newbies in my neck of the woods to persevere with some pretty painful exercises which hopefully will be of huge benefit to them.  

Not sure if I mentioned it before but at my last SIP meeting several folk were advocating Manuka honey for combatting dry mouth.  I have to confess when I saw the price of about £10 per jar I didn't bother to try it.  Last night at a second focus group meeting 2-3 folk said they had picked up on the previous recommendation and had found a substantial improvement, so I'm going to give it a whirl (£4.30 from Aldi cf about £10 in Tesco).  Not sure if it's too late to try the exercise regime too, but I will give them a bash and keep you posted if I think they are beneficial.  A couple of them are certainly pretty challenging even for those who haven't had RT, let alone folks who are going through it.

Jo and Debs - lovely to see you two still dipping in here - love to you both xx

Rozdog - good to read that  you are doing well and still visiting the site.  Would be great if you can join our next get-together (Liverpool?).  You too Jo via Widnes?

Love and hugs to all.

Irene x

Hi Nicola

It's great to read about how you are doing two years on.

As Meerkat@65 has said, your thread has helped so many travelling a similar path to you.

How nice to see you as well as other members of 'the gang', including Vatch and lsjheatherlea11 returning this week to share positive news.

Best wishes

Jane 

Hello all of you lovely people in the tongue cancer thread,

I am just popping in to let you know we have a new person on the forum who just got diagnosed with tongue cancer and who I am sure would love to hear from any of you. I mentioned your brilliant thread already but you can also find chopsy1's story here and share your experience there too if you wish.

Many thanks and I hope you are all doing well,

Lucie, Cancer Chat Moderator

Thanks for this Lucie

I am sure we will do our bit

Vatch

Ok folks someone else who needs a little help and advice

www.cancerresearchuk.org/.../tongue-biopsy-0

The last thing you need when you are going through cancer treatment

Another one that may need our help

www.cancerresearchuk.org/.../8-months-pregnant-when-husband-diagnosed-with-mouth-cancer

Hi everyone, 

I hope everyone is as well.

I just wanted to say thanks so much to everyone who supported me this time a year ago, this time last year I had just been told I had cancer of the tongue and did not know what was waiting for me.

A whole year has now past and thankfully im on the mend, without your help in the early days it would have been far harder. Time goes by so quickly.

I value life more now and plan to make the most of it, I hope to travel to a few places and try out some new things.

Thanks so much to you all, I will be forever grateful.

Hello again all of you lovely people,

Well you were so helpful with chopsy1 last time that I had to come back for more. Many thanks again for your help. It was much appreciated.

I was wondering if any of you had had a diagnosis of a tumor that started on the tonsils and has pushed up through the tongue? If so, Andie would love to hear from you. You can find Andie's thread here.

Many many thanks and I hope you are all doing well.

Lucie, Cancer Chat Moderator

im upset that some peoples post are answered and others who are clearly new to this are unanswered and seemed distressed , going through my own mouth worries but would not ask for help on this site, as some  posts seem to override others 

Hi there

I am sorry to hear about your experience on this site but please bear with me as I was taken ill and

was not able to write to you.   As my cancer was eleven years ago and am cured now do let me know if

you wish to know anything from me.

Best wishes
 

Hi there

I am sorry to hear about your experience on this site but please bear with me as I was taken ill and

was not able to write to you.   As my cancer was eleven years ago and am cured now do let me know if

you wish to know anything from me.

Best wishes