TONGUE CANCER PROBABILITY

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Hi to the group, I am new here, my name is Lynn, nice to meet you all,

I have suspected tongue cancer which is located on my right hand side to the back of my tongue. I thought I had bitten my tongue and kept doing so in the same place. This then turned into an ulcer that was not clearing up. It is now really painful and hurts my ear sometimes. I’m not sure if it’s getting worse very quick or if it’s due to the biopsy and 4 stitches that I had 3 days ago but I am taking painkillers all the time now. I have a CT scan booked tomorrow and MRI the following day. 
My question is that I am worrying it’s growing quickly every day and do you know how long before I will get a call back to Churchill Hospital in Oxford to discuss the results and the way forward. Also if diagnosed cancerous (I am almost sure it is) how long before I get scheduled in to operate?  I’m worried if it’s not in lymph nodes yet then it might be by the time they operate. I’m trying not to worry, but it’s so hard. Any advice/information I will be really grateful for. Thank you

  • Hi Lynn and welcome,

    My cancer is right side of tongue and rear floor of mouth and started the same, with a couple of ulcers.

    Every one will say, the waiting and not knowing is the worst, everything is going through your head at once and your imagiantion can run riot.

    They told me two weeks for my results, but i had them a week later. Once i had my diagnosis my feet didn't touch the ground with scans, results and so on.

    I'm obviuosly no expert, but the biopsy will be causing some/most of the pain, again mine was the same. The tongue can be very sensative, everyone knows how much it hursts when you accidently bite it !!

    I also thought the cancer was spreading as i had similar pain going up into my jaw, i thought it had spread it the bone, but it was just the nerves that were affected.

    Wishing you the best of luck.

    Cat x

  • My question is that I am worrying it’s growing quickly every day and do you know how long before I will get a call back to Churchill Hospital in Oxford to discuss the results and the way forward. Also if diagnosed cancerous (I am almost sure it is) how long before I get scheduled in to operate?  I’m worried if it’s not in lymph nodes yet then it might be by the time they operate. I’m trying not to worry, but it’s so hard. Any advice/information I will be really grateful for. Thank you

    Hi Lynn and welcome to the ommunity

    It is difficult waiting and waiting and worrying but try to tell yourself there is absolutely nothing you can do about it. 

    Biopsy results are usually available within two weeks, sometimes earlier. They are discussed by a weekly panel of clinicians who decide what to do then you'll be informed. Scan results are quicker so your MDT (multi disciplinary team of clinicians and allied health professionals) will have everything they need before your consultant next sees you. If it is cancer things will then move very quickly.

    So try not to worry about any delay. At least you now know the sequence of events so I hope that helps a little.

    I was 18 weeks from finding my cancer, 12 weeks from diagnosis to treatment start and four years later I'm bouncing along pretty normally.

    Just hang on. It will be a miserable few weeks but trust your team to look after you. 

    Where are you being seen?

    Best wishes

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

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  • Hi Lynn Welcome  to the club none of us want to join. With hindsight I was in holiday in Spain when I first noticed my lump in collar bone thiught I had pulled a muscle. Move forward 9 weeks got home saw gp was put in 14 day cancer pathway band the rest is history. Try not to worry easy to say hard to do been there we all have. I was 63 days from being out in pathway  first day if treatment. Here I am almost 5 years happily living my life. There’s a tried and trusted route trust in your team. 
    In the meantime watch crap box sets anything to distract. I found postive mental attitude helped me , but I’m a glass half full person anyways. Just try not to stress head and neck cancers do respond well to treatment. 
    hugs Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Hello Cat,

    Thank you so much for your reply, I honestly really appreciate the time you have spent to answer. I have woken up reading this and feeling a lot more positive. I hope you have a lovely day and fingers crossed for me, but I’m going to get in a PMA attitude and what will be will be x

  • Hi Hazel, thank you for your inspiring story. I too can back from holiday and while sitting waiting for my luggage, I received the referral. At least I had a worry free holiday. I am feeling a lot better after hearing other people’ experiences. I will start on the box sets :-)))

  • Hi Dani, thank you so much for taking time to tell me your journey, I’m so pleased you have had such a great result. Reading the comments has helped ease things. I am being seen at Churchill Hospital, Oxford.  I am waiting for appointment with results when all information is gathered. I will keep positive. 

  •  I am waiting for appointment with results when all information is gathered. I will keep positive. 

    Fingers crossed 

    If you need us there are lots of us here to hold your hand. Lots who have done all this and are now well. 
    hugs 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Hi I did 7 series of game of thrones no idea what I watched ! But re watched a year later and enjoyed them. Stick on here we will all help you get through it. 
    Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Good evening Bailey 1, these are the same symptoms i had with an ulcer-type lump on my gum that would not go away, i would say its probably the biopsy that is causing you to overthink, i had one biopsy on my lower jawbone where the pain was really bad and like you, i was on painkillers. I would say that it is not growing quickly as most people have to wait for the biopsy until the actual treatment/surgery. i think i waited about two months before i was operated on, try not to look on Google for answers as it can be misleading and leads to a lot of worries, i know its hard not to worry especially as waiting is the hardest part, i acted on the assumption that it was cancerous and if it was not it was a bonus. Good luck with your scans i did not find them too bad, you will be looked after very well by the nurses. Wishing you all the best, take care.

                                                        Chris x

    Its sometimes not easy but its worth it ! 

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  • Thank you so much Dani.

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