Tongue Cancer - Diagnosed two days ago

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

Parents
  • Hi Nicola.

    It seems I am in a similar boat to you, I delayed going to the gp for a month as I have had tonsiliis a lot so tried all the thing I normally do, then the gp tried strong anti biotics but as soon as I knew they were not working I went back.

    As I said to her a sore throat should not last for 6 weeks so within 2 weeks I had an ENT appointment.

    Things moved fairly fast then, they booked me into a onestop clinic for neck lumps(idea was to be seeen by everyone in one visit and be told what was wrong on the day) but also a ct and surgery to put a camera down and take samples. by the time i went to the clinic i had already had the ct scan (the day before) and a date for surgery(biopsy) I was only in the clinic a few min as they told me about the mass on the ct and needed the samples and MRI to know more. at no time has anyone told me in the way your gp has, it seems bad untill the have formulated a plan as it seems to me not all are the same. I am ecpecting a combination of chemo r/t and surgery.

    I have only told one other person apart from my wife as timings are not good and untill I have answers it will just be harder. 

    Seems like a heavy burdon at the moment.

    Ken.

  • Hi all how are we all doing?

    sorry not been around but it's been crazy at work

    welcome aboard all you new peeps I know you prefer not to be here but this is a great place to be if you are in our club

    mutant of which you are not I had throat cancer I got away with not having surgery and am now 7 months post treatment and very much on the mend although I have still got a way to go to get back to what I was

    i diarised my experience on my blog page so it might give you some idea about what you are about to go through gammaraygary.wordpress.com/about/

    so what's doing all looking forward to meeting you all in AprilApril

  • Just wanted to post a pic of some of us from this thread. We had a meet up in Liverpool at the weekend which was our second meeting since we all met on this chat forum a few years ago.

    We all came from different parts of the country and it was great to see everyone again and find out how we are doing with life after cancer. Hopefully this will give some inspiration to those of you who are fighting the fight right now. 

  • Dear all

    we all came together with a common goal, we are all achieving that goal and try to help others through it

    great to see you all again

    xx

  • I'd have loved to have met you all but I'm in Canterbury which is a long way from Liverpool. Glad you had fun x

  • Who's who in the photo?? I love to,put faces to names! X

  • Well we all came from all over Perth in Scotland, Bristol Suffolk and London

  • From left to right...

    Jayne, Garry, Nicola (myself!) Gary's wife, Irene's husband, Irene, Simon, another Gary.

     

    Our next meet up is planned to be in Edinburgh! 

  • Thanks for posting Nicola.  It was ABFAB catching up with the gang this weekend - and all the more special for this 'child of the sixties' reliving the wonderful Merseyside music of the era.  To any 'newbies' visiting this thread with a recent diagnosis -  I hope that the very special friendship (through this wonderful forum) of this bunch of 'contemporaries' gives you hope that there is lots of life after head & neck cancer.

    We supported each other so well during and immediately after diagnosis and treatment and I hope many of you will continue to do so.

    Lots of love to all, Irene  x

  • Hi all - great picture! I'm gutted I missed that as I'm from Liverpool and live in Cheshire (I'm still under Aintree Hospital in Liverpool and go there for my scans and check ups).

    I spent a lot of time on the 'branchial cyst' thread years back (started by the legend 'Access') when I was going through my journey. I was originally diagnosed with mucoepidermoid carcinoma with unknown primary in March 2012 and had a neck dissection, tonsilectomy and a piece of my tongue removed.

    The years have gone by and I had an MRI scan a few weeks ago which came back clear, and means that I am now offically cured, and will be signed off by my doctor (my primary didn't turn up and it now looks as though it never will). No more scans or visits to the hospital  and any further cancer would be a new one. I must admit I feel a bit of 'survivor's guilt' when I read about the tough times people have here with the radiation. But then getting cancer out of the blue at 33 years old and having major surgery isn't exactly a walk in the park! I do consider myself lucky though, and being able to see my son and daughter who are now 6 and 8 thriving in their young lives and in school is the greatest pleasure of all, you do wonder when you get hit with the diagnosis. They were very little at the time.

    Everyone on here was brilliant when I was going through my own journey, and I hope you are all winning. you look like a healthy, thriving bunch on the picture!! :-)

    Cheers

    Leo

  • Hi Leo, lovely to hear from you and even better - to know that you have reached that magic 5 year point where you are officially cured - what a great feeling that must be!  However what a bummer that we didn't make contact sooner so that you could have joined our Liverpool get-together.  We plan to do it again in Edinburgh in 2019 so please do watch this space and join us if you can.  Cheers, Irene x

Reply
  • Hi Leo, lovely to hear from you and even better - to know that you have reached that magic 5 year point where you are officially cured - what a great feeling that must be!  However what a bummer that we didn't make contact sooner so that you could have joined our Liverpool get-together.  We plan to do it again in Edinburgh in 2019 so please do watch this space and join us if you can.  Cheers, Irene x

Children
  • Hi Irene

    I remember when I was going through my journey I always loved seeing people getting successfully to the end of theirs - and now here I am myself...:cool: Gutted that I posted a little too late for the get together but hopefully I can be there for the next one in Edinburgh!

    Take care and hope you are doing well!

    Leo