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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 SimonSmith

    Simon, well said. Couldn't agree more. Nicola, all the positive things you are doing are great!

  • Offline in reply to SimonSmith

    Hi Simon,Gary

    Thankyou for those kind words, but in all honesty I think being old makes a huge difference.

    I think if it had happened to me in my 30's I would have been considerably less pragmatic.

    When I was told I had a fifty fifty chance of more than six months left I was amazed how

    calmly I took it.  I suppose as you get fairly old you know it won't go on for ever.

    I live in beautiful countryside and when I have my daily exercise walk I look at the view

    and feel very lucky to be here.

    I have great sympathy for all you younger people like yourself,Nicola and Gary with what you

    have to face. Its not knowing whats ahead of you as you battle through cancer that is the

    most frightening.

    Regards to all

    Colin  

  • Offline in reply to Colinb

    Hello Friends

    Some time since I've logged in and caught up with you all.  It sounds like everyone is moving on in leaps and bounds which is fantastic.  Simon, I share your feelings - spoke to a neighbour this afternoon (inviting me to her annual girlie BBQ in a couple of weeks) of a 23 year old relative of hers just diagnosed with lymphoma; how I hate to hear of youngsters having to face all this *** so early in their lives.  But she is tackling her treatment bravely and fingers crossed all will be well with her too.

    Quick update from me.  Finally got rid of the chest infections after more sputum samples and a third course of a different antibiotic to fight a different and rarer bacteria lurking in my throat, so have been feeling much better this past week.  Also had a few nights break in Northumberland - my first time away from home since being ill.  My husband always eats a big breakfast and skips lunch, while I struggle with breakfast and need something to keep me going at lunchtime.  Long story but on the drive down to Newbiggin-on-the-sea we attempted to stop in both Berwick and Morpeth.  Grumpy old man/woman driving/navigating syndrome kicked in - new parking disk arrangements in said towns riled grumpy old man so he ignored hungry grumpy old woman and kept on to our destination when no satnav made grumpy situation even worse (how hard can it be you just turn left off the A1 and head for the coast?!).  I really had an appetite by the time we got there and enjoyed a huge amount of fish and chips compared to what I normally eat nowadays (as always washed down with large quantities of milk)!

    The not so good news is that my 88 year old Mum has put her artificial hip out again (3 months since last time) and was admitted to hospital yesterday. Last time she ended up being kept in for nearly 4 weeks and missed her grandson's wedding.  This time Dad's 90th birthday tea-party is on the horizon so fingers crossed we'll get her home before then.

    I had my monthly hospital check-up yesterday (6 months since end of treatment - now that feels like a real milestone) and pleased to report they are very happy with me.  Apart from the early morning mucus clearance and swallowing difficulty (it eases off throughout the morning) I'm definitely feeling much more like my old self.

    Lots of love to all.  Keep well please!

    Irene x

  • Offline in reply to isjheatherlea11

    hi Irene , great to hear you are doing well!

  • Offline in reply to Colinb

    Hi Colin, sorry just realised I got you and Simon muddled up in my last post.  It was your sentiments I meant to echo, re hating to hear about youngsters facing cancer so early in their lives.  Simon, that's not to say I don't agree with all your pearls of wisdom and I'm sure you would also share this opinion anyway! 

  • Offline in reply to Guzzle

    Thanks Gary, hope things continue to go well with you too.

  • Offline in reply to isjheatherlea11

    Hi Nicola,

    Just a quick welfare check......

    How's it going - fatigue and ulcer any better?

    Just wondering (as I expect others are).......

    Simon xx

  • Offline in reply to SimonSmith

    Simon, ditto! Sometimes people need to move on and counsellors may advise to stay away from forums. But I was wondering how Nic was. Regards, Gary

  • Offline in reply to SimonSmith

    Hi all,

    I've not posted on here in a while as I didn't have much to update but now I realise it's been three weeks, time has flown! Thanks for asking after me. I've been attending the fatigue course each week but my trainer has not yet increased my exercise as I've been very tired for a couple of days after, although last week I felt fine for the first time so today he said he will increase my times next week if I'm fine again this weekend, fingers crossed. I've also been attending my counselling, creative writing and had my second shiatsu session yesterday. I enjoy all of them but I do get quite tearful during counselling. It seems I'm struggling a bit emotionally with coming to terms with all that's happened. It's also been a sad week as we found out a few days ago that my grandad has pancreatic cancer which has spread to his liver, so cancer strikes again in our family. We will know more next week when he meets with his consultant but sounds as though not much can be done for him. Hearing this news stirred up some horrible feelings for me but as he's old I also feel thankful that he doesn't have to face the dreaded chemo etc.

    On a brighter nite, Simon, so pleased to hear you managed to eat out! I bet it was divine! I'm hoping to try a chow mein for my first take away, I used to love chow mein. Any more news on the further blood tests? I've been advised to get my blood checked too as the dentist thinks this could help find out if anything particular is contributing to my fatigue. I too feel fatigued for two or three days of the week then feel pretty good the other days. I've made adjustments to everyday life accordingly, is that how you manage it too? How are you coping with a dry mouth in this hot weather? I'm drinking so much water it's ridiculous! The ulcer on my tongue is still there, thanks for asking, although not as sore. I have a check up next week so will mention again.

    Guzzle, you sound well and chirpy (although you have sounded upbeat all the way through!) you picked a great time to go to the IOW, we've been very lucky with our summer so far. How are things going? Are you still managing to exercise and eat well?

    Irene, sorry to hear about your mum, must be extra work for you. I did laugh at your post about your husband and your car journey! There was a time I might have got annoyed by such things but cancer has definitely chilled me out! Glad to hear your chest infections have settled down, although was surprised to see you managed fish and chips with milk. I can't enjoy chips anymore, too dry and I don't think I've attempted fish yet. Milk is a no go as I can't taste it and its too cold. Anything cold or hot has no taste for me. I tried an ice cream the other day and after three licks (not that I can lick anything anymore with my new designer tongue!) the taste was gone.

    Gill, pleased to hear work is going well for you. It's just as well too as money can be such a worry, worries we really don't need at such awful times. Have you heard anything from Jo? I can't see any recent posts from her and was wondering how she is recovering from her op. I've thought of her quite a bit, I hope all is as well as can be.

    Colin, good to hear from you. I too enjoy the small things in life so much more these days. I thank god everyday that I got through that dreadful time and it was only a few days ago I felt so blessed to be spending a day out with my little girl on the beach. I have a weak arm too, although for different reasons. The graft on my tongue came from muscle and veins in my left arm and I struggle with lifting/carrying with that arm. I only hope I can also get to 78 with such a good outlook on life,

    Good to catch up with everyone, I wont leave it so long next time. There's no keeping me away from here, this discussion board has helped me a lot.

    Speak soon,

    Nicola xx

  • Offline in reply to Nicola2209

    Hi Nicola,

    Good to hear from you and I pleased that things seem to be moving in the right direction for you, albeit very slowly but I guess that is the way things are with recovery.

    Really sorry to hear about your grandad's situation. Hopefully he won't have to endure the treatment regime as we did. I'm not sure how old your grandad is but I do hear of older people developing cancer but in the overall scheme of things it doesn't actually shorten their life, i.e. their life expectancy is in any case less than the rate at which the cancer is likely to spread or develop. Let's hope that the prognosis isn't too severe.

    In relation to fatigue and physical activity and to give you something of a benchmark - I am now exactly one year on from the start of my treatment. I still have a day or two each week where I get very tired in the afternoon, however I can really detect that this is very slowly improving week on week. I used to run 25 to 30 miles per week with no trouble. Now I walk a mile from my house to the station, and then a mile across London to my office - when I get to my desk I'm pretty knackered (although a couple of coffees soon sorts me out and then I'm fine). I think that your dentist is right in that a blood test is a good idea - I think that it is relatively common for things such as red and white cell counts to be low for many months, and possibly even years, after treatment. Low red cells = fatigue (or so I'm told - I've stopped checking these things on the internet). My saliva situation has continued to very slowly improve - it's still some way off of being normal but it is definitely improved on how it was a couple of months ago.

    I've recently had another CT scan, blood tests and a 24hr urine test (you really don't want to know), and apparently my thyroid is not quite how it should be. It is not apparently seriously amiss but it could be what's behind the night sweat problem apparently. I have to go for the same tests in October to see if things have improved, if they have then fine, if not then I'm told that it can be addressed with medication.

    Speaking of chips! You reminded me and I can't remember if I mentioned it - I was at a horse event over in Somerset a couple of weekends ago and there was a van selling chips covered in gravy - well they went down okay and it was really nice to have something naughty and normal. Worth thinking about. If you're trying this at home then I think that fried would be better than oven or microwave chips. Also, my wife now makes cheese sauce for me on an industrial scale - we freeze it in smallish containers and I get one out every few days. This has enabled me to eat fried potatoes, quiche (including the crusty pastry), burgers and all types of veg. I've even had a steak and kidney pie! We make the cheese sauce more flavoursome with onion. Still can't do cereals at breakfast but I have porridge and fruit now. Bread is a big no-no except in soup. Good luck with the chow mien, Nicola.

    I think that the thing to keep in mind is that how we are now is not how we are going to be for evermore - it's just that progress is so slow that it feels that way.

    Keep your chin up, Nicola. You're moving in the right direction.

    Simon. xx

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