Hi Nicola

I just thought i would drop you a line as I have been chatting to simon who appears to have gone through the same thing i am now facing

At present I have a secondary site in my lymph node on the right hand side of my neck ... they can not find a prime site I have had multiple cameras and tubes doen my throught had a ct scan and a PET CT scan and no primary site found ... I am now going into Addenbrookes on monday for multiple biopsies from the back of the toung throat and a scape of the tonsil area (although i had them out when i was 8) before they assess my treatment plan

At present i have been told that they seeno need to operate and think the lump can be dealt with ... via the 6 week of chemo and radio therapy ... so you appearto have had it a lot worse than myself

I know what i have and accept it and like where Simon was i just want to get on with it and reading your and Simons posts has given me a flavour of whats ahead ... i know its different for everyone

Im just trying to get a perspective on what i am now facing and how long im going to feek crap for as i have a business to run and am trying to put in steps to limit the impact of my absenses

regards

Gary

Hello everybody,

Sounds as if everyone is doing well especially Gary. Have you finished treatment now? How are you feeling? Sounds as if you have coped well, how was the cookie? There was no way I could have eaten a cookie at this stage with a frazzled tongue! As for being bunged up, Laxido was what I was prescribed, it seemed to help. Strangely I've still got them as well as some other meds, I feel weird about throwing them away but I'm not sure why I'm keeping them, kind of a safety net I suppose. Keep me updated with the Leeds meet up, I love Leeds. I will try and make it if I can. You sound as though you have escaped the phlegm issue, I still get a sticky mouth first thing in the morning but the phlegm problem settled down a few weeks after treatment.

Simon, I've noticed an improvement with food too. I eat three meals a day most days now which helps the fatigue. Pleased to hear you say you have days when you feel like you've never had cancer, I look forward to that. I'm still waiting for my peg to come out, I have a tongue check up next week and I'll be making my disappointment known, I just want it out now. The referral should have been done almost eight weeks ago so it's time to make a bit of fuss I think! I'll be glad to be rid of it however every time something comes to an end and its another step closer to being normal again I get a little wobbly. I suppose like you were saying, it's all been a safety net and when it was time to have my PICC line out or stop meds etc I felt a bit shaky. Sounds as if you are back into the swing of life which is great, I hope you get the help you need with the night sweats.

Irene, sweet potato chips are a great idea! I will try that. I find regular chips too dry too and I can't have ketchup as it stings but I did try chips and mayo but again was still too dry. I add caramel syrup to my coffee and a big spoonful of sugar, otherwise I can't taste the coffee alone. The worst times are in the evenings when I fancy picking at something nice to eat. I used to have chocolate or cakes/biscuits, now it's rice pudding with a dollop of jam but it all takes so much more effort! Sorry to hear about the episode of blood, perhaps something was a little harsh on your throat which made it bleed. I know my throat is still ever so raw and wounded. If feels as if someone with long nails has scratched down the inside of my throat and the same areas seem to sting most when I get brave and try something a little spicey. It was also very sore when I had a bit of a cold and cough recently.

Gary, I'm sorry to hear of the position you find yourself in because of cancer. None of the treatment is pleasant but it is manageable. It does get depressing at times especially if you are unable to eat but you just have to keep reminding yourself that it won't be like that forever, only three months ago I couldn't ever imagine eating normally again but I'm already tucking into meals. In terms of time off of work etc, I didn't work at all throughout my treatment but that was due to the major operation I had a couple of months before my treatment started and I was told to expect a minimum of four months of recovery time from the surgery alone. However I did meet another person having the same treatment as me and he managed to continue working through most of the six weeks, I believe his job was partly physical. I would suggest putting steps in place to ensure you don't have to work and if you can then its a bonus. You never know how you'll feel from one day to the next and it can be quite exhausting. I know I couldn't have thought about working when it was happening for me, I struggled for three to four days following the chemo each week but everyone is different. Also, try to remember that the recovery for a few weeks afterwards is when you will also need to rest. It all sounds like such a lot to think about in the beginning but as long as you have help and support, it's only a short time of your life that will be disrupted. You'll be back at work and back to normal before you know it! I hope all goes well on Monday, let us know how you get on and please feel free to ask any questions. I'll be thinking of you.

Speak again soon,

Nicola xx

Access 14 from branchial cystvthread is ill. He is a lovely person. Hurts. G.

So sorry to hear that Gary.  I followed the branchial cyst thread to start with as there was a suggestion that's what mine might have been.  I remember Access as a regular contributor, always supporting others.

Irene you did indeed find me and succeed where Nic failed!

Hi Irene,

Lovely to read your update. Wow, it sounds as if you're being kept busy with work and taking care of your parents, and it's good to read that you're feeling pretty normal now. Hope you're still remembering to listen to your body though and rest when you need to!

Sorry to read your second post and how sad you're feeling. I often wonder about some of the people I've come into contact with over the months, but I never exchanged contact details with anyone. Seeing the news about Lynda Bellingham has really brought my mood down today. This b****y disease!!!

Thank goodness for this forum where we can share, rant and offload!

I wholeheartedly agree with your comment about making this Christmas a good one! Next week is half term, so I may even start a bit of shopping (or at least writing a list!)

Take care Irene, sending you a hug, Jo xx

Lovely to hear from you Jo.  I dont know what it is, maybe just the anniversary coming round but I've just been feeling so low these past few days even though I am getting good checkup results. After finding out my chemo-pal lost her battle several months ago (I somehow felt I should have known that!) I was just gutted to hear from Gary (Guzzle) that Access (Branchial cyst thread) is in palliative care and today Lynda Bellingham's story...  Sending you a big hug back and enjoy that Christmas shopping (or list writing!).   The value of this forum is quite immeasurable! Love to all x

Sorry to hijack this thread, but it seems to be quite active.

I have read the first few pages, some of it scared me quite a bit but I wanted to know how others have dealt with this.

I am a 23 year old male and today was diagnosed with tongue cancer.

I went to my GP about a month ago, as I had a lump within my tongue (at the front on the left, not on the top) and a small white head as part of the lump grew under my tongue. I thought it was nothing but my mum made me go and get it checked. GP asked if I wanted to wait a few weeks to see if it went, I did, but it did not go. It did not get worse either.

So I was sent to hospital and the doctor said I needed a biopsy.

Today it came back as cancer. Myself and the doctor are flabigasted that it is, I do not smoke, or drink. And its not HPV.

He said its becoming alot more common amoung the young.

They think at the moment its in a very early stage T1, and that it does not look like it has spread anywhere, they did CT scans of my lungs and throat and mouth just in case.

They also think it can be removed easily with a laser and there will not be any real difference in my tongue.

However I am getting pains in my neck, they say its because the cancer lump in on the same nurve, hopefully they are right.

After reading this thread I consider myself very lucky as it could of been a lot worse, I am just trying to work out what could of caused it. There must be a reason why.

I am getting the scan results in a few days I will be quite worried until then.

The NHS has been very quick and efficent. I had my result within a week, I am so glad it was caught early but it shows how important it is for tests to be run ASAP.

Just wanted to get this of my chest and wish everyone here the best of luck.

Hi Roz Dog,

I'm so very sorry to hear of your shocking news and I wanted to offer my support. It's a very scary time and its all such a lot to take in, I remember those early days well and it's difficult to think of anything else but please take some reassurance form me. You will beat this, it's going to be a difficult and unpleasant time in the short term but you will be ok. Only a year ago I was recovering from similar surgery and now I'm doing great and back at work, eating, speaking etc. everyone says they would never have known I'd gone through such an awful time by looking at me now. Keep us updated, there's lots of advice we can all give as well as support and feel free to ask any questions.

I don't have any answers as to why it happened to me either, a lifelong non smoker, but I believe stress played a big part. I've always burnt the candle at both ends, rushing about, never resting, always worrying, stressed! Now I take life at a much slower pace. As for the pain you're experiencing, I too had pain in my ear/jaw/neck and I was told it was "referred" pain as it's all connected. The pain was worse following the biopsy, a tongue biopsy is pretty brutal!

Until you get your scan results I hope you can take comfort from all of us on here, we have all come out the other side. I'm so very glad you got your tongue checked when you did.

Will look forward to hearing from you,

Nicola

Hi Roz Dog, and welcome.

I can second everything that Nicola said. You're in good company on here and this is a good place to ask about the various things that can crop up as you take the journey. It sounds as if you are in a good place in terms of diagnosis - if it can be dealt with by laser then that is excellent news. Either way, you can be confident of getting through this. The NHS takes a lot of stick, but for Nicola, me and most others on here it has been brilliant. Once cancer is diagnosed various timescales and targets kick in that ensure you get treated promptly.

Keep in touch mate and feel free to ask any questions.

Simon.

Hi Roz Dog

So sorry to hear of your recent troubles, but welcome to the club which none of us wanted to join!  It does sound like you have caught this very early and I am certain that all will be well for you, but I well remember what a worrying time it was waiting for those scan results.  In the unlikely event that you did end up needing further treatment, it is well worth it.  I had chemo and radiotherapy during December and January, but have come out the other side looking and sounding no different than I did before and have been back to work since April.

What I can't help with at all is the 'why me?' question.  I have to admit I did smoke for a while but that was over 30 years ago, so I was told mine was more likely to have been viral in origin.

This is certainly the right place to come if you have questions or just need to let off steam.

Wishing you the very best and so pleased you got this checked out early.

Irene

Hi Everyone,

Thanks for your messages.

It is comfort to know I have somewhere to turn if there are more developments.

I still cannot believe it, I have not taken much care in terms of my health and assumed I was young and did not have to worry until I reached 30, now I will looking to start a much better diet. It might not of been the cause but it can't be a bad thing.

One day they will find the cause and I suspect it will be quite a simple one.

My nan chain smoked from the age of 14 all the way to 75. Its really weird how some people can do all sorts and not get it, and others seemingly do nothing bad and do get it. I guess we will have to wait until the cause shows itself. Which it will.

I will keep you all updated, its nice to be able to chat to you all as I cant talk about it with people I know.

Thank-you

Hi Everyone,

Thanks for your messages.

It is comfort to know I have somewhere to turn if there are more developments.

I still cannot believe it, I have not taken much care in terms of my health and assumed I was young and did not have to worry until I reached 30, now I will looking to start a much better diet. It might not of been the cause but it can't be a bad thing.

One day they will find the cause and I suspect it will be quite a simple one.

My nan chain smoked from the age of 14 all the way to 75. Its really weird how some people can do all sorts and not get it, and others seemingly do nothing bad and do get it. I guess we will have to wait until the cause shows itself. Which it will.

I will keep you all updated, its nice to be able to chat to you all as I cant talk about it with people I know.

Thank-you

Roz,a young guy of 25 was getting treated when I was - he was a smoker but shouldn't have smoked rough to cause it. I used to smoke but was hpv positive. Just concentrate on getting treated and recovering.

regards, Gary

Hi all,

Good news, it has not spread to the lungs etc. They were right when they said it was very unlikely that it had.

So they will have to cut out just under half of the left side of my tongue, and will somehow fold it over so it does not look much different. I don't quite understand how, but my mind goes blank when I am talking about it with them, I will have to take a pen and paper with me next time as they suggested and write down all these questions beforehand.

The person doing the work seems very confident and does seem to know what he is talking about. They seem like a very robust team. I am very happy that they are doing the work.

They are also going to test my lymph nodes with dye and test one, rather than taking them all out. They are confident none of the cancer has broke away and gone somewhere else as its still early stage. I will not need any other treatments.

I consider myself very lucky, I know I will have some trouble once my tongue has been cut but I am aiming to make a quick recovery. I know it could of been so much worse.

Hi Roz dog,

Just wanted to say welcome, you've come to the right place for great friends and helpful support.

Glad to hear the positive news that it isn't in the lungs.

Take all the guidance from the guys and girls on this thread who have the experience .

Wishing you all the best in your journey with this disease.

Hugs

Annabel. xx

Hi Roz,

Writing down questions is a good plan - I used to go armed with a list of things that I wanted answers to. It is also a good idea to consider taking a relative, partner or close friend. Sometimes they will remember to ask things that you forget and they can also remember what you were told but forgotten in the heat of the moment. I used to sometimes take my wife and she usually came away more clued up than I did.

Don't be afraid to ask questions on here - loads of us have been through similar experiences and people are keen to give support if they can.

Welcome to this exclusive club!

Simon.

Hiya Roz

So glad to hear that your cancer has not spread but sorry that you are having to undergo reconstructive surgery to your tongue. As you know, Nicola has gone through this and is doing just fine now.  I'm sure she will be a huge support to you (as we will all try to be) becayse she has first-hand experience of a similar procedure.

I remember when I was having my treatment that I got so angry and upset to see youngsters like yourself going through this.  It's not pleasant at any stage of life but just seems all the more unfair that when you are young and should be enjoying life to the max, to have to cope with this bombshell.  However you will get through it and before you know it, this will all be a distant memory.

Keep your chin up mate and do keep in touch and let us know how you are getting on.  As I think I said before, it's a brilliant place to ask questions, get helpful tips and have a moan if things are getting you down.

We'll be with you all the way!

Love Irene x

Hi  Roz,

I lost about 60% of my tongue, but then my cancer was more advanced than yours.

They will presumably cut away the part underneath on the lefthand side where the growth

is and then some of the top and then just join the two parts. down the length of your tongue.

If your surgeon is as deft as mine it should be pain free. The stitches fall out after some days..

Whilst you are unlucky to have cancer at least you have had it diagnosed quickly.

I faffed around for six months plus whilst 3 specialists??? said 'looks OK to me'

I then saw a real specialist who put his finger on my tongue and said 'I think its cancer'

Good luck! I hope all goes well.

Colin

Hi Roz dog, I'm so pleased to hear that your cancer has not spread! Any idea when your surgery will be? I wish you all the best for a quick recovery.

Your surgery sounds different to mine, they originally told me they would do the same as you're having before I had my scans when they thought my tumour wasn't quite so big and they told me it would be a four day stay in hospital. Hopefully you'll be out in no time. Unfortunately my tumour was bigger than expected so I lost half of my original tongue which is why I needed reconstruction using muscle from my arm so it was a two week hospital stay. However, there was no pain and it was not so bad at all so I'm sure you will be fine too. As Colin said, the stitches fall out on their own and overall, my mouth healed within a few weeks after the surgery. It was just a shame it then got blasted with the radiotherapy just after!

Keep us updated, I'd like to know how you are getting on. Life is so unfair that these things happen, but sometimes being a younger patient can go in our favour with recovery. Stay brave, it'll all be worth it in the end.

Nicola

Hi Colin,

I seem to have been quite lucky in getting to see the right people, my GP was unsure but referred me, and the consultant I saw knew straight away I think.

I would of left it, but my mum kept bugging me to get it checked, thank god.

So far so good in regards to the NHS.

They seem confident it will be straight forward so I am not that worried about the actual surgery, more what the after effects will be like.

I will update when its been done.

thank-you

Hi Nicola,

Thanks for your message.

The surgery should only take three hours providing the tumour is as they think it is. I don't think they are going to cut a whole part of my tongue off like I thought, rather dig the tumour out. So I will have a piece of tongue missing, but it will be underneath and a tiny piece off the front missing. I think this will feel weird for a few days. They said I will need some speech therapy but it should not take long for me to recover and I should only be in hospital for a few days.

I did read your early posts before I was diagnosed so it was a big help as I knew what could happen once I was told and what the steps were likely to be.

For the first few days I was on a bit of a downer but this seems to have passed now. Going around in circles asking why me, what have I done to deserve it, its not fare so young etc gets you nowhere.

I keep finding I forget about it all, and then it hits me. But I am very greatful that its early stage, and there are others going though far worse.

The operation should take place within the next three weeks. My neck is still painful every now and then and also sometimes when I swallow, but I am told this is due to the nurve the tumour is on.

Thanks for taking your time to reply and I will keep you updated.