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

  • Hi Lenny

    Just wondered if you’ve  had any news regarding our last chat.

    It would be lovely to hear from you.

    Best wishes

    Carol

  • Hi Hazel, I'm in touch with Gary via Facebook and have just passed on your message.  I think his 5 year anniversary must be around the end of this month or early August.  Wonderful to read that you too have a tight-knit gang who have supported each other all along the way. I've just had a quick read through your wonderful blog (methinks inspired a bit by Gammraygary ;).  I still have a few weird food issues, which I doubt will ever leave me now, but with the 5 year all clear under my belt , I consider it a small price to pay.  As you quite rightly said at the start, when you get that bloody scary diagnosis your first thoughts are the darkest.  I thank my lucky stars that I was born in the 50s and not a decade or two earlier, otherwise I probably wouldn't be here to sing the praises of CRUK and the ever-increasing number of cancer survivors.  I've just sent a wee donation to your justgiving page.  Sorry it's not more but I just sponsored several folk doing wonderful fund-raising stuff (for CRUK, Macmillan and other cancer charities).

    Well done you - good luck!

     

  • Hi

    thank you so so much  I haven’t received notification yet but will keep my eye out the amount doesn’t matter like Tesco say every little helps. Our grandson gave me £1 st the weekend which lol I gave back to him Sunday morning plus a bit more as he stated in bed past 0700 am.   Yes gamma ray definitely inspired me. Our little gsng really motivate each other with tips and jokes. Agree glad we were burn in the 50 s as have heard horror story’s if wall bricks being used to hold your head in place   Shudder the thought. 

    Thsnk you once again it means so much 

    h xx

  • Sorry Hazel, don't know what went wrong, I must not have finished the transaction.  Took me a while to find your donations page again, but it should be through now.  Best of luck, Irene x

  • Hi Irene

    Thankmyou very much for your kind donation I will report back ca after I’ve done  the ride in the 27 th. yes they have notified me that you’re donation is there thank you investigate again

     

    Hazel xxx

  • Hi Joe

    How are you doing post treatment? Did the side effects continue to get worse, or plateau? Do you mind if I ask where you were irradiated?

    I’m now 3 treatments in. Am amazed how quick it is- maybe 30 seconds of treatment, two arcs. I’m having VMAT. Having the mask made was horrendous for me, I got really claustrophobic, panicked and freaked out. Had to try 3 times! Finally they decided that as I was only being treated on my tongue I didn’t need the full head and neck mask, so they gave me one usually used for brain tumours. The eyes, nose and mouth were already cut out and it doesn’t cover the neck or shoulders. That was so much better, I think it was the face being covered that made me panic!

  •  I was diagnosed with  tongue cancer in December 2017. The operation is a long one it takes all day  but of course  you don’t know anything about it.  It is quite difficult for the first few days as there is a lot of swelling so you  have to be fed through a tube until you can Swallow well . Plenty of ice cream in the first few days you can swallow is very soothing .   Once you can eat soft food reliably they will discharge you from the hospital. Speech is distorted due to the swelling but with speach therapy gradually gets better and to my astonishment my speech was back to normal in about four  months to such an extent that people that did not know I had had the operation could not tell at all.   The operation was done through my  mouth so there are no scars on my face and the incision line on my  Neck although very visible to start with has now almost disappeared. Reconstruction on my tongue still feels a bit odd and my sense of taste is a bit reduced as of course there are no taste buds on the part of your tongue reconstructed. However overall the operation has been a complete success. The  NHS team at the hospital were incredible. It is really scary when they give you a business card for a MacMillan nurse but here I am  completely  cured and back to normal. Here’s hoping that your outcome will be the same.

  • hi SW80

    post treatment the first 2 days were the worst, the heat of the days didn’t help as they were the hottest days on record. From about day 3 it all changed. Then on day 4 I started to manage some normal food again rather than the foul fortisip drinks! Since then every day I’ve felt a lot better. I’m now 2.5 weeks since it ended and I’ve plateaued a little but I have some taste back it’s not very whole at the moment but it will take time. For example I can’t taste anything sweet at all. But tomato pasta and pizza or anything with lots of garlic I can taste enough to enjoy it.

    still have some pain which I’m working on, but I’m on fentanyl patches at the end of treatment I was using 50 micro grams plus some morphine, I’m now down to 37 micro grams and maybe a dose of morphine before bed as that’s when it can get a little stingy on the tongue. 

    As I’ve been on quite high doses of morphine and fentanyl I have found I’m getting come downs and withdrawals but I’m not too concerned as I’m gradually reducing the doses.

    I had treatment at hospital. It was a great facility. 

    Im really glad they’ve helped with the mask it was awful and I really hated it. As you get towards the end of its anything like me up to week 3 I was fine and I’m the first few days of week 4 it was me a switch and bang I was really ill in loads of pain and feeling generally awful, I lost 6kg a week in week 4-5-6 I could certainly afford to lose a bit but a lot towards the end came from muscle so I’ve got a bit of work to do to get back to being fit again.

    i hope the next few weeks go by fast for you and before you know it you’ll be out the other side. Stick with it there will be days where you want to just day no more but push through there is a light at the end of the tunnel.

    all the best

    Joe

  • Hi Joe, wow you’re doing so well for this stage, that’s given me lots of hope! Thanks for coming back to update us.

    I’ve just finished week 3, so halfway through. The first 2 weeks were fine, no side effects at all and I gained 2kgs since the start of treatment. Then on day 10 the lining of my mouth started to break down and ulcers appeared. It’s got progressively worse over the course of this week. The worst one being an ulcer on the right side of my tongue that rubs my teeth. That’s the side of my mouth not being treated, so unfortunately means I’ve had to move on to mainly purreed food now. The pain has got worse too - I have a burning sensation most of the time. Swallowing is ok, I have some Mucositis right at the back of my mouth that hurts when I swallow as it makes contact with the base of my tongue, but my throat is so far unaffected. Taste is weaker but not gone fully at this point - I can taste on the right side of my tongue, right inner cheek, roof of mouth. 

    I’m currently still on paracetamol, aspirin mouthwash and topical anaethestics, expect I’ll move on to stronger painkillers next week.

    Keep us updated with your progress, it will give me something to aim for! 

     

  • Today I finished my final RT session 30/30, so I came to post an update.

    I started taking morphine in week 4, and now at the end of week 6 I’m on 24 mg/hour via fentanyl patches and top up with 4-6 5ml Oramorph per day. I’m told this is a fairly low dose of morphine. In addition I take paracetamol and use an aspirin rinse multiple times per day.

    I’m in a fair amount of pain. My pain is an intense burning / stinging feeling that is worse when eating and after eating. Until the last few days the ulceration was almost all on the left side of my mouth (side being treated), but completely covering that side, including inside of my cheek, lips, soft palate and back of my mouth. The last few days I also now have ulcers on the right side of my tongue. 

    For the past 3 weeks my diet has consisted of Fortisip / Ensure, Scandishake, Calogen and chocolate mousse. They’re very pleased with me for managing the mousse, as apparently this counts as real food and will help to protect my swallowing function. I haven’t lost any weight since the start of RT. “Eating” burns like hell, but I rinse my mouth with aspirin beforehand and that enables me to get 2,500+ calories down me per day.

    The outside if my face and under my chin is red, but not open. I have the feeling of mucus at the back of my throat but it’s not too bad. No mouth dryness so far, in fact I currently have excess drool! Except for nighttime when my mouth feels a bit dry. I’ve still got some taste remaining, in the part of my mouth that’s not ulcerated. 

    Now I’m hoping I’ll be one of the lucky ones for whom things don’t get worse over the next two weeks! I’ll give another update on progress.