Life after tongue and throat cancer

hi I am new to all this so wish I had found it a while ago. I am 51 years old and last year just before my 50th birthday I was diagnosed with base tongue cancer also infected lymph nodes.I had chemotherapy and radiotherapy which ended in august last year, I had my first all clear in December what an amazing Christmas present.Now been off treatment for 14 months and I am well, but I was hoping to get back to how I used to be,but it's not happening, I know I should be thankful I am alive and I am but don't think now there is any chance of my taste buds returning, I can taste very little food I find it hard to chew and can't eat anything that is dry so every day my food consists of pasta and sauce. I used to love having a glass of wine but that has also gone it feels like it is burning my mouth. I am on 8 weeks checkups at moment and I go so low when the time is due, is this how I am going to feel for the rest of my life. Is anyone else feeling as I am

thanks in advance

  • Oral thrush can be very painful & can sometimes take a long time to clear . Silent reflux and hurt burn  can also cause sore throats . Also where you think you are feeling the pain may be referred, ie coming firm another place .... everything they have check so far sounds promising . My lymph glands where a lot bigger than Lea size and on both sides of my neck ... if you Have an infection and it won't clear and heal it will try and escape from your body Via your lymphatic system , but it can't so you will feel a lump ... I can understand your worry it's horrible , anxious and stressful and none of this helps ... you should get that scan result soon and then you will have a clearer picture . I also absolutely believe you can think you have pain in say an ear and you actually don't ....so that's normal . X x x 

  • My throat hurts mainly in the evening, it doesn't hurt to swallow just every so often I get a pain in the throat. Like now I have some pain in the throat on the left hand side along with ear pain, toothache, and pain in my head all on the same side, tongue not as painful, it's so weird, it won't last long though. 
     

    honestly I am really trying to tell myself that! When I asked the dentist if she thought I had cancer she said no! I walked out of there 2 weeks ago feeling happy and over the course of the 2 weeks Iv gone backwards! 
     

    im sure the lump has been the same size the whole time I have had it. Moves around, feels a bit hard, little bit tender to touch but I do keep playing with it to see if it has grown. The last time I had an infection was when my new piercing in august got infected causing me to have antibiotics so I mean it could have been there since then. I remember last January I had the same sort of sore throat I am having now but back then I probs wasn't such a hyperchondriac as I am now! 
     

    fingers crossed morning I will have the result! 
     

    Thankyou again! I can't tell you how much talking to others helps me xxx

  • Hi 

     

    some taste does return in time. I'm five years on post treatment and things get better but very slowly but at least we'realive

    my life is back to normal but our normal is not everyone,s normal 

     

    good luck

  • Hi pollyann I was diagnosed with tongue cancer about 5 years ago but after many biopsy to my tongue they decided to give me chemo and radiotherapy last year after treatment was told it hadn't worked but just finished chemo tablets as this was second round of treatment ,had a scan showed no movement so its staple at mo ,my tongue so swollen have to liquidise my food I don't know how long I have but I'm plodding on and may go back to work in June that will keep me going .you keep well pleased you not in my shoes .

     

  • Hi Lilou

    My Name is Carol and a fellow tongue cancer patient. I'm 7 years post treatment now but I went through a year of operations and treatment  Removal of one third of my tounge and a complete neck disection to remove 84 lymph nodes.  I'm so sorry you've had such a bad time over the last 5 years and if you want to chat on here I'm more than happy to listen as I know how hard it all is. 

    Good luck with everything and don't give up, try and be positive as treatment keeps improving all the time 

    my best wishes to you 

    Carol 

  • Hi Carol at mo I'm not as bad as you have had ,but hearing all what others have gone through I hope I don't its so scary, I'm scared of passing away that's because I'm not ready for that yet got loads to do first.but sounds you have coped well what you gone through I hope all goes well with you and everybody else on this site keep in touch . 

  • Oh that good that your doing better than I thought. Recovery and treatment is very good theses days, so hopefully you will have a lovely life with a new normal.  I have check ups every 6 months now but have to move on and try not to worry  anymore. M y consultant is very happy with my progress. 
    Take care of yourself 

    carol 

  • Hello, 2 years ago I had tongue cancer which had spread to lymph nodes, after 30 sessions of radiotherapy I then had Sepsis, anyway really on the up now but still struggle to eat certain things like rice or chicken, I find slow coked meats so easier to eat, I’m lucky that I’m able to taste foods. I wonder if anyone else still has food getting stuck, phlegm, tingling around the ear, although I can taste food well enough I can’t eat food as spicy as before & any alcohol needs water added.  I’m not moaning I’d just like to know if anyone is still going through similar things? 

    Thank you

  • Hi

    So sorry to hear of your sepsis, that must have been just as frightening as the disease. I too have lots of problems with eating but try my best to carry on as normal but have to give a lot of thought to the amount of food on my fork and make sure I've chewed the food properly, I can definitely get food stuck,  which just won't go down so I have to cough it up again in my hand ( sorry but I'm sure you understand what I mean).  I have constant pain in my neck and bouts of pins and needles around my ear and neck. Unfortunately I was burnt badly with the radiotherapy so my neck is very sensitive to touch and I now have a 45% blocked corotid artery that my consultant is monitoring, I have to take aspirin now and blood pressure tablets. Life is much slower for me theses days but I retired early and enjoy my holidays etc now. 
    Take care

    Carol 

  • Thank you so much, you have put my mind at rest.  My husband & I are both retiring this year only a few months earlier  - but after all we've been through we've decided to enjoy our lives together. Take care, stay safe & enjoy holidays & slower pace of life (just as we intend doing).