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

Ive just read your posts and I wanted to wish you good luck. It is so hard waiting.

I was diagnosed with cancer of the tonsil and a brain tumour in february. After chemo and radio, I had a clear scan in relation to the cancer last month. The treatment was pretty grim in parts but you get through it. Like you, I've got kids and have never smoked or drunk to excess. I'm a bit older (45) but it has all been a massive shock.

I'm now waiting for a brain op which will probably be early next year.

Make sure you accept all offers of help so you can rest. I didn't see anyone apart from immediate family for two months because I couldn't speak and felt so rough due to the chemo but I kept in touch with my friends by text. I know they felt helpless and wanted to help.

You will get through this. It too six months but I feel fine now - just nervous about the next op.

Take care.

Debbie

Hi Nicola,

Just wanted to come on and wish you well in your operation. Will be thinking about you and your little girl.

Take all the help and support you are offered.

will be here when you get back.

Hugs and best wishes

Annabel.

Hiya Nicola, I've followed your posts on here as my mum was diagnosed with base of tongue cancer a few weeks ago, she isn't having an operation, her situtaiuon is different to yours... the cancer has spread to both sides of her neck. she's doing ok after having her tonsils removed and a neck dissection (she found that bit easier than having the tonsils removed) he's just completed 6 weeks of RT with weekly chemo.

i just wanted to say (as the others have) your attitude and approach to this is so positive .. so  keep fighting and we'll be thinking of you xx

Andrea

Hi Nicola,

You'll get this post when your surgery has been done, but just wanted to say I was thinking about you!

I hope you're recovery is speedy and as pain free as it can be. I'll not be logging after Tuesday (op day for me) so I'll have to catch up with your progress in a few weeks time. Take care, Meerkat (Jo) x

Hi, I'm sorry to hear ur story. My cousin had a tumor on hus tongue bout 12 yrs ago now , they opened him up down his chin & a bit below , opened his bottem jaw in haf & took it out this way. He was told he would never speak again & would need to learn sign language. Horrible to hear I no. But 12 yrs later he's fine. Apart from the scar down his chin. & slurs his speech a bit ,(was worse at the start but barley noticible now.. yes he did spk again & lost half his tongue but recovered fully to live a normal life :). Hoping & preying for u . Xx

So sorry to hear about your tongue cancer.   If it helps then I am a tongue cancer servivor.  i had a lump on my  tougue and was removed ten years ago.   I was devasted because after cutting the tip of my tongue I could not pronounce the words properly for two years and felt my world was coming to an end.   I did not give up so soon after after the surgery when I got enough strength I started physical exercising which I had done little of it in my life and started increasing the time on my physical exercise.   I learned cycling and now cycle 20 miles in a day and also walk 2 to 3 miles a day if the weather permits.   I never thought I was going to allow my cancer to take over my life and it did not.   I do have ups and downs but hey that is nothing compared to difficult time I had for the first year.   My advise to any cancer patient is to never give up and do a lot of xercise.   I also had an exceptionally good surgeon who supported me and is supporting me in my not so good time.   I do not know where you live but always happy to help.  I had lymph node removed but the scar is not visible anymore.   I hope this helps

My husband was diagnosed a few weeks ago, had surgery removing piece of tongue and reconstruction of the tongue. They also removed neck limph nodes. Dr feels all cancer in tongue was removed due to the margins. We are now embarking on the next part of the treatment whether it be radiation or chemo... Can you give me an idea of what treatment you had and are there any lingering issues???

Hi BACMMO,

Sorry to hear your news, but never fear the treatment these days is pretty good and within six months or so your husband should be well on the mend.  As you will see on this site the usual treatment is:

32 sessions of radio therapy and perhaps 6 sessions of Chemo.

The RT is painless but may give you something like mild sunburn.

The chemo can cause nausea and sickness. This will normally be controlled with drugs.

Once your husband has experienced the first week and knows what to expect it

is just a case of getting through it. 

It is probable that his speech will be affected for a while but most people get back to normal

within a few months.

My case was fairly bad and I cannot eat at all and only my wife understands my speech.

The professor told me this would be so before the OP. and gave me the alternative of

going home with a lot of morphine to see out 6 months.  That was 8 years ago and my life

is unrestricted in all other respects. So listen to the doctor, if he says things should be OK

relax and look forward to 6 months time when all this will be behind you.

Good Luck

Colin

My husband started treaments this week after fighting to get started chemo was on Monday and he is taking Docetazel due to being a diabetic. All sent well except he had an alergic reaction severe back pain, they stopped, gave benebrylwaited 30 minutes and started again, all went well, no side effects. he has had 4 days of radiation 1 more later today and they all went well. 1st day was alittle long doing all the adjustments but yesterday in out in 25 minutes for radiation. so far so good,,,1 week down 5 to go...

Bakmmo

Please pass my thoughts on to your husband this stage of the treatment is never nice and don't get easy as he progresses through. However we all go through this differently, some better than others, so my fingers are crossed for your hubby.

Hang in there it will be worth it and shout if you need to know anything

Having been through it thats what we are hear for

All the best

Vatch

Bakmmo

Please pass my thoughts on to your husband this stage of the treatment is never nice and don't get easy as he progresses through. However we all go through this differently, some better than others, so my fingers are crossed for your hubby.

Hang in there it will be worth it and shout if you need to know anything

Having been through it thats what we are hear for

All the best

Vatch

Hello everyone!

I must apologise for my lack of replies recently. Life has been hectic but things have started to settle down so I'm back on here, I told you all you wouldn't get rid of me haha!

Good to hear from some newbies - Ken, Ryan, Mary & Gazza and a few others. Sorry to hear of your cancer news but you've come to the right place for help, support and advice. I've had the pleasure of meeting a great bunch of people from this site and I hope we will all be lifelong friends and always keep in touch and any newbies are also welcome on our next meet up! I'm also happy to give any advice from my experiences of the treatment.

Irene, Simon, The two Gary's, I hope you are all well. I'm now 18 months post treatment and doing well. Still finding new things to taste and feeling more and more comfortable with eating and also confident with different foods. My first proper curry a couple of months ago didn't go down too well so I'll avoid those for a while longer but I have found new things to enjoy instead.

I have another ultra sound on my neck in a few weeks, the lump which popped up a few months ago is still there, it's been scanned twice already buy they are confident it's nothing sinister, probably just a swollen lymph node from a cold I had. Hopefully they are right! I'm a bit concerned about my teeth, my lack of saliva is pretty bad since RT so I'm conscious of this having a damaging effect on my teeth and they seem to be decaying quicker than ever before so I'm going to have to talk to my dentist about that. However, life is on the up right now and I'm looking forward to a trip to California in August! I'm also starting a new job next week! 

Debbie, how's things with you? I hope your op went well if you've had it yet? I will be thinking of you. I must also, catch up with Jo's thread too.

Bye for now and best wishes to these going through their treatments. It does get much better!

Nicola xx

Hi Nicola, I just PM'd you through FB.  Seems I jumped the gun re your new job which hasn't yet started, so very best of luck with that and a holiday in California to look forward to sounds marvellous!  Best wishes to all the newbies on this thread.  I'm sure you'll get great support and advice here, as I did, and make lots of great new friends.  All is good with me (17 months post treatment) apart from bouts of thrush and a few moans about food, but not much to complain about really.  Hello to the rest of our gang, Gary, Dave and Gary.  Good to see you are all having fun x

Hi Nicola, 

Great to see your latest news! Glad to see you're managing to eat new things - I'm with you on the avoidance of curry,  though for wholly different reasons haha! 

Have a fantastic time in California and good luck with the new job. Really glad that your thread is still active and offering support to the newer forum members. 

How's the fatigue? Hope you're still pacing yourself! 

Well, off to catch up with Irene and Deb on another thread! It's all go haha! 

Sending big hugs to all on this thread, Jo xx

Hi Jo, lovely to hear from you!

I didn't want to reply to you until I had familiarised myself with where you were at with treatment etc. Sounds like (as usual) you are in good spirits and keeping busy with your work even with all that's been going on. I admire you for that although I'm sure it's difficult at times. I expect you will welcome the rest over the summer holidays!

My fatigue is much better thanks, although still strikes at times. I've got myself a new job which is less demanding and closer to home and I'll also be working less hours, which is great. I decided I needed to make some changes to accommodate being worn out all of the time so hopefully the new job will be a good change for me. My cancer was a wake up call to look after myself a little more :) 

I need to catch up with where Debbie is at, I'll have a good read on here when I have a bit more time.

Look after yourself, sending hugs back to you,

Nicola xx

Irene, good to hear from you too and thanks for the Facebook message. Wow 17 months already, that's flown by. I've struggled a little during this lovely weather recently, my thirstyness is terrible and BBQ food not so good for me but I manage. I hope we will arrange our Liverpool meet up sometime this year, it would be lovely to see everyone again before the year is out. I might give the chaps a nudge on fb and see how they are.

speak soon,

Nicola 

Hi Nicola, yes I share your sentiments on BBQ food (not that we've had much BBQ weather in Scotland - it has been just dreadful up here, no summer weather to speak of really)!  It certainly would be lovely to have our Liverpool meet, so nudge away!  

Hope all goes well with the new job.

Love Irene x

Hi all how are we all doing

sorry been a bit absent just trying to sort work out before a went on hols for two weeks

i had a great time away but was very ill at the start not due to food poisoning but I think my immune system is just a bit low and just could not deal with the new bugs....that's my theory anyway

Even though I ate like a pig 3 courses 3 times a day i only managed to put on 5lbs and appeared to have now lost 6lbs and I have only been back 2 days

wierd

anyway will catch up soon hope you are all ok

HI all.

I went for my yearly checkup (8th) and all was OK. But they want to remove

the lump  under my chin to give me more flexibility of movement.

Its about 2 inches square. They will take a piece from my stomach  level

with my navel to fill the ensuing hole. This will take place Dec 3rd.

Just 2 nights in hospital (I hope) and I will look as lovely as ever once the scars heal.

Colin

Hi Irene, Colin & Varch, good to hear from you all.

Vatch sorry to hear you were unwell on your hols, hopefully it didn't spoil it too much. It's still early days for you so may well be the tail end of your recovery affecting your immunity. This weight gain problem is annoying isn't it. I seem to just gain it around my middle now, still only weigh 6 stone 3 !!

Colin, I hope all goes well with the op although you have a while to prepare. Is the lump caused by lymphedema? I have a friend who also had tongue cancer and the same surgery and treatment as me (we have identical scars and tongues!) and she has lymphedema under her chin. She has recently had some laser treatment to try to help it but she says it hasn't yet made a huge difference. Hopefully your op will be worth it and you will notice the difference.

Gary J has suggested we organise a Liverpool meet up for later this year. What's everyone's thoughts?

speak soon,

Nicola xx

Hi Guys,

Good to hear from you Nicola. Glad you are doing well with your new job and that your lump was nothing sinister. A new job is great and like a fresh start.

I see the photo of your meetup, looks like you had a great time, I will have to try and come along to one, would be good to meet others and hear different experainces. 

Just to say hello to everyone else as well, I do still visit here and try and help when I can.

Thanks for all your help everyone at diagnoses nine months ago, time has flown past. I am getting a new job as well, one which is much less stressful, cancer is differently a wake up call. Strangly I feel a lot more calm at life, I am no longer in a rush as I used to be, take each day as it comes.

My recovery is going very well, tongue has healed very good as has the neck, speech is much better as welll. I had a lump pop up but like Nicola was told its nothing sinister, just a node. Eating is good, I struggle to eat chips which is no doubt a good thing.:)

My neck plays up every now and then with stabbing pains, and pain sometimes when swallowing. Does anyone else get this after a neck dissection? Its weird because it only started happeneing in the last few months, under my ear. They did an ultrasound scan to check the lump and all was well.

I hope you all have a great summer and thanks again for the support.

Space

a.k.a Roz_dog