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Tongue Cancer - Diagnosed two days ago

Nicola2209
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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

  • Offline in reply to kirkc99

    Hi Carol, 

     

    Hope you don't mind me replying to your chat. 

    I had surgery 1 month ago and had a partial removal and a flap from my forearm. I am generally recovering well. I don't have to have any further treatment thankfully but just have a couple of questions and thought you may be able to help?

    I wondered whether you had a sore throat after surgery? My throat has just started being sore and I'm worried its not normal. Also, how long did it take for the tongue to settle to it's natural size and how long did the swelling take on the neck to go down? I don't know if I am expecting too much too soon!! 

    Hope this is ok I am asking. 

    Best wishes

    Catherine 

  • Offline in reply to JamieR85

    Hi Jamie, did you get your results? 

     

    Hope you are ok x

  • Offline in reply to Catherine32

    Hi hope you don't mind me replying I'm six months in from partial tongue and lymph node , and I'm still having few issues but it is getting easier I'm back at work , eating still difficult but I'm just pushing myself to keep going.  All sounds like u are going in right direction , my throat was sore gir a while but I suppose prodding and poking in there did not help , keep going and hoping it gets easier gir you   But it's hard and I totally understand   I thought it would be so easy so was shocked how hard it's been to get over this sugery and how I'm still not 100% but I'm alive and well and tha means everything xxx

  • Offline in reply to noonie64

    Ah thanks so much for your response!! It is so much harder than I I thought too and it's really shocked me!! Sounds like you are doing great though and will try and do the same! Xxx

  • Offline in reply to Catherine32

    Keep going good days and bad , I still have a few , but I know the light is at end of Tunnel , I don't think we actuslly realise the sugery we have had done and how major it is , I'm a person that just always says it's only this and that , but I must admit this time I'm now realising it's just not that easy , sending love and all my strength to you too keep going x

  • Offline in reply to Catherine32

    Hi hope you don't mind me replying too.  I too had same op 11 months ago and find that although there is initial recovery of the surgery in the first few weeks, full recovery does take time, albeit maybe with a few adjustments to eating/speaking.  I find the tongue still feels cumbersome some of the time (tho it does seem to vary) but I have adapted to it.  Also the muscles/nerves in the neck take a long time  to recover from the surgery (year or more) which affect a lot of the mouth/tongue movement.   I am still having improvement now and recently got back the feeling on the right side of lower lip.  I was speaking recently to a friend who is a childrens speech and language therapist and she told me that sore throat problems occur very frequently after trachestomy, also problems with swallowing/speech/strength of voice and that some she has worked with, having had this op (trach), often struggle with speech/swallowing/sore throat for a year or more, I hadnt thought of this.

     

    I wish you all the best in your recovery, you sound like you are doing brilliantly, give yourself plenty of time and rest in the coming months.

    Best wishes

    Mary

  • Offline in reply to Mary62

    Yes I have to agree my consuktant said at leader 18 months , I have numbness and find um

    ci stanly sealing salavia as I seen to be chewing and storing food to , my mouth still very sore and lots of clicking to , nightmare but it's good days and bits so good , but my shoulder has been affected to from nerves in neck and still revue I f physio , I don't think any of ya realise what this surgery entails till you have it done xx

  • Offline in reply to noonie64

    Yes, I also have difficulty with dry mouth/saliva and breaking food down to swallow and getting it down.  (this is my second lot, had chemo/radio for base of tongue 5 years ago, but was still having gradual improvement/changes following that treatment 3/4 yeas later), plenty of time for change and improvment. I do think it takes a year or so after the surgery to get the strength, mental and physical, back again. x

  • Offline in reply to Mary62

    Hi Mary, thanks for your reply, that is a great help!! 

    How is your speech now? How long did that take to get back to somewhat normal?

    Thanks I was hoping that the swelling around my neck and under my chin is not permanent but if it takes time then I'm happy to wait and do what I can! 

    Thank you for putting my mind at ease about the throat too. Any soreness or hurt in that area now I panic like mad!! 

    Xx

  • Offline in reply to Catherine32

    Hiya, speech is OK but some sounds a bit tricky and lispy still, tho I have had to lose some teeth recently (due to the effects of the previous radiotheraphy) and am having to get used to dentures which have put me back with the speech quite a bit, tho now I feel stronger generally, it doesn't worry me so much.  Singing practise is also meant to be good for getting voice/throat stronger and also for sounds exercise (I try this  a bit with music on and everyone out!), also exerises on youtube.

    The swelling under the chin was slow going down for me but OK now.  

    All the best to you in your recovery

    Maryx

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