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Tongue Cancer - Diagnosed two days ago

16 Aug 2013 10:14

Hi, I am a 32 year old single mum to my two year old daughter and I found out two days ago that I have tongue cancer.  I'm waiting for an appointment for an MRI scan and a CT scan which should hopefully be within the next few days and this can find out if the cancer has spread.  I then have to have an appointment to discuss a treatment plan but I have already been told that this will involve cutting out the lump in my tongue and a neck dissection to remove Lymph nodes.

It's all such a lot to take in and I'm trying to come to terms with the fact that in a few weeks time my life will never be the same again.  I have read some horrific stories about what I have to come and I am willing to face any of it so long as I stay alive for the sake of my daughter.  I have only told my parents and one friend so far, no piont telling everyone until I have more facts after the scans but I'm concerned at how far the cancer could have spread.  I have had this painful lump on my tongue for six months but the doctors kept giving me prescripotions for other things which has delayed diagnisis.  I have also had pain in my throat and more recently I've noticed ear ache and jaw ache and neck pain.  I'm trying to stay positive until I know more information from the scans but I know I will crumble if it has spread beyond repair.

From reading stories from others on here and other websites, I'm a little confused that I haven't yet been told what stage the cancer is at.  Isn't that something that could be identified from my biopsy?  How could the doctor be so sure that I will need a neck dissection before knowing what stage it's at?

None of this has come of much of a surprise.  I googled my symptoms of a persistent ulcer back in April, before I first went to the doctor and was alarmed to see the word "cancer" everywhere I looked.  I had all the symptoms but was just hoping I was wrong.  The first two doctors I saw about this reassured me that it was nothing more sinister than an ulcer, which put my mind at rest a little, how wrong were they?!  I am just glad that I stayed persistent and kept going back to the doctor about it.  I don't think they treated it as an urgency as I don't fit in with the usual risk factors, I've never smoked, I hardly drink and I'm not in the right age bracket.  I'm now feeling annoyed at the waiting game.  I want to know when the scan will be.

It helps to come on here and read other threads but I still don't think it has fully sunk in yet but when it does, positivity for the sake of my little girl will just have to get me through.  I would love to keep hearing stories from others or any advice would be greatly received.

Nicola xx

Re: Tongue Cancer - Diagnosed two days ago

16 Aug 2013 10:23 in response to Nicola2209

Hi Nicola,

Welcome to this friendly and supportive forum. I am sorry to read about your symptoms and feel sorry that the doctors didn't pick up on it earlier. Treatments are improving all the time Nicola and new drugs are being developed all the time.

Hope when you get your scans done the cancer has not spread. Anytime you feel the need to talk, rant or rage, this is the place to do it and I and other will do all we can to help and support you. Please keep us updated when you can, best wishes, Brian.

Re: Tongue Cancer - Diagnosed two days ago

16 Aug 2013 10:49 in response to Nicola2209

Hi Nicola,

So sorry to read your story about the horrible situation you are in because of cancer.

The mis-diagnosis is no doubt something that makes you feel very angry but try not to let it as it will only drain your strength, (easier said than done though). My Dad's g.p. did something similar with him and kept giving him ani-biotics for a cough that would never go away.

I can tell you that a friend of mine was diagnosed with throat cancer a few years ago, I believe he was in his early fifties at the time.  He has had treatment and an operation and, aside from looking a little different he is now over it and getting on with his life.  He now makes a living giving boat trips in North Wales.  I will keep my fingers crossed that you will be no different.

Wishing you the very best of luck and as Brian has said, come here anytime to rant or vent but certainly to let us know how you are getting on.

Garf. x

Re: Tongue Cancer - Diagnosed two days ago

16 Aug 2013 11:38 in response to woodworm

Hi Woodworm,

Thank you for replying to my post.  I'm sure I will be on here a lot to share info and vent my anger. I have already noticed that the few people that know about my situation already, haven't reacted in the way I would have liked/expected, so talking to other people that are familiar with the situation will help.

I will keep everyone posted.

Nicola xx

Re: Tongue Cancer - Diagnosed two days ago

16 Aug 2013 11:43 in response to GARF

Hi Garf,

Thank you for replying to my post. I haven't let the late diagnosis get me down, I don't have time to concentrate on that. I'm just wanting everything to move along so I can get on and fight the cancer.  In what way does your friend look different? I'm trying to find out what to expect, the doctor I spoke to wasn't very forthcoming with information. Ah I formation or experiences from others is a massive help.

Thanks,

Nicola xx

Re: Tongue Cancer - Diagnosed two days ago

16 Aug 2013 11:54 in response to Nicola2209

Hi Nicola,

Thanks for the reply. You say that people you have told haven't reacted the way you would have liked; well I would just say people often don't know how to react or say in circumstances like this. So please don't be be hard on your family or friends. Someone on this site recently said until you have cancer you don't know what to say or how to react and it's so true. so any time you want to talk, please be assured people on here know how to react and to support you.

Take care, best wishes, Brian

Re: Tongue Cancer - Diagnosed two days ago

16 Aug 2013 12:31 in response to Nicola2209

Nicola,

His name is Roy and after his operation, treatment and recovery he now looks very much like he did except that one side of his mouth is now pulled down slightly and his voice has changed.  I can tell you that it wasn't very long before his friends and family stopped noticing the differences.

Please let us know as soon as you have any further news and in the meantime I suggest you get in touch wih one of the nurses on this site as they may be able to give you some useful information.

Take care.

Garf. x

Re: Tongue Cancer - Diagnosed two days ago

16 Aug 2013 14:17 in response to GARF

Hi Nicola

Garf is right, you can contact the nurses free from a UK landline on: 0808 800 4040 from Monday to Friday, 9am to 5pm.

I'm also sending you a link to our patient information on tongue cancer.

It's good to see you have received such a warm welcome here!

Please keep in touch and let us know how you are getting along.

Best wishes

Jane

Re: Tongue Cancer - Diagnosed two days ago

16 Aug 2013 15:24 in response to Nicola2209

Hello Nicola, sending you love and strength. I'm also a single mum, about to lose my own single mum so know the terror of thinking about not being there for your child. Easy to say, but take a stage at a time as at the mo you haven't got enough info so panicking will waste your energy and  stop you thinking clearly. You mention family an dfriends, lean on them and tell them they need to be strong as that's the one thing I havent got and it's the hardest bit. You will find the strength for whatever comes your way. The early dayseate like a howling icy wind in your chest where you feel youre always holding your breath, suppose we are. Whatever you are told you will deal with, you have to so you will and you must hold hope that it will be ok, one way or another everything has to be ok, bless you, clare

Re: Tongue Cancer - Diagnosed two days ago

21 Aug 2013 08:29 in response to Nicola2209

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

Re: Tongue Cancer - Diagnosed two days ago

21 Aug 2013 08:38 in response to woodworm

Hi Brian,

Thanks for your reply.  I have found that the one friend I have told appears to be avoiding me. She has sent me text messages of support but doesn't seem to want to speak to me. We would speak for long periods of time fairly often during the week but I've had no call from her. I understand it must be difficult for her but I really just want her support and to speak with her.  My mum has been supportive but seems to have her mind set on what she thinks is best and doesn't think if it's best for me in my situation. I told her I didn't want to see anyone for a few days whilst I digest all of this information but her and my dad just turned up at my house unannounced which annoyed me. I know people want to show their support but I need them to listen to me so that they know what support I want and need. I haven't told anyone else yet, I'm waiting for the scan results next week so that I have more facts. I know that following my operation I probably won't want to see many people as I won't be ale to speak and I'll probably look awful so I would prefer to keep things normal with friends until then but I have kept your words in mind - that people don't know how to react to such news.

It's good to use this site as a sounding board and thanks again for taking the time to reply.

Nicola

Re: Tongue Cancer - Diagnosed two days ago

21 Aug 2013 08:42 in response to GARF

Hi Garf,

Thanks for your reply and thanks for answering my question.  My doctor has told me I won't look any different after my operation. I did feel vain asking that question but he assured that it was normal to ask! However that is based on the info he has so far as I still haven't had my scans so he can't confirm everything for sure.

I haven't contacted one of the nurse on here yet, I have a very good nurse at the hospital who I can contact with any questions but I have read the link one here, sent by Jane, about tongue cancer which was very useful.

Thanks again for your reply and I will keep everybody posted.

Nicola

Re: Tongue Cancer - Diagnosed two days ago

21 Aug 2013 08:48 in response to Kittensmittens

Hi Clare,

Thank you for your reply to my post.

I suppose you are right and I will just have to deal with whatever news comes my way but with a two year old daughter, it will be hard to stay positive if there is anymore bad news following my scan results. I know I am lucky to have supportive people around me and I count that as a blessing.  I am very sorry to hear of your situation with your mum, it must be very difficult for you and I hope you have found support and guidance on this site. People on here are lovely and I hope you have been able to read some kind words from them. I wish you all the best going forward and please keep us updated.

Nicola xx

Re: Tongue Cancer - Diagnosed two days ago

21 Aug 2013 08:53 in response to Moderator Jane

Hi Jane,

Thanks for the welcome and for the information. Your link was very useful. No doubt I will be needing that phone number at some point but for now, I have a very helpful and friendly nurse at the hospital who I can call during the week.

Thanks again,

Nicola

Re: Tongue Cancer - Diagnosed two days ago

21 Aug 2013 11:18 in response to Nicola2209

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.