Possible base of Tongue Cancer Experiences Please

I've just got back from my ENT appointment, the doctor shown me my growth which is on the base of my tongue. He's now referred me for an urgent biopsy under general anaesthetic and a CT scan. I asked the doctor for his opinion as to if it could be treated and he said he didn't know as this depends on all the test results ewhich they are trying to get done asap.

I'm obviously pannicking now and thinking all worst case scenarios. Could anyone please share their experiences with me?

  • Shelly hi 14 months ago i was in the same situation. I was diagnosed with a T4 in the base of the tongue,( T1=small T2 medium T3 is large and T4 is large and on the move). My neck lymph nodes were enlarging. A mix of radiation and chemo was 100% successful. I've just come back from a check up.I've met people who had the same tumour 7 years ago and they are doing great, Michael Douglas made a speech about his which i found helpful. 6 weeks of radio and 3 sessions of chemo in the throat area does cause short term collatoral damage but you just have to stay focused on the prize all the way through. A biopsy and a chest scan and maybe a lymph node needle stick test is needed for them to build a strategy around what's best for you.Radiation and Chemo are often the first line of attack but surgery can also be an option depending on your case. Treatments are tailor made , the guy i met had the exact opposite to me in chemo/radiation mix but it just depends.Relative to most other cancers treatment is uncomfortable but the success rate is high in getting rid of it for ever.best of luck, keep your head down and keep calm. Some good advice my oncologist said was dont google success rates etc. alot of the data is old and misleading. Websites like this one or macmillan are best.

  • Hi Shelly

    It is perfectly normal to feel the the way you do we`ve all been where you are now.

    What the Dr is trying to tell you is that he wont know till your biopsy result is known he wont burden you with IF its this or If its not.

    My tongue cancer was middle 1/3rd but there are some folks on here who have base of tongue and Im sure they will come along with replies.

    it is very understandable to feel panicky but overloading yourself with too much information at this stage will just give you more stress and panic. Concentrate on getting the biopsy done for now and please dont be tempted to google as everyone who has always wishes they had`nt as it always comes up with worst scenarios.

    I hope things go well for you xx

     

  • Hi, Thank you for the reply which I have found  interesting and reassuring. I've settled down a bit from the initial panic and frantic googling which I know isn't good. The waiting for scans and biopsies is frustrating but the doctor said withing 2 weeks.

    I'm pleased that you're doing so well after your treatment for T4 and hope you remain free of this dreadful disease. 

  • Thank you for your reply Clara which makes good sense, I really need to stay away from google.

  • Hi Shelly This is Hazel Aka  RadioactiveRaz I am 18 month post radiotherapy for tonsil cancer with affected lymph nodes , h p v 16+ What I would like you to do is please keep off dr google , like my oncologist said to em even he could go on google and diagnose himself dead the facts rarely correct any stats are often well out of date.Its nit easy waiting but if your diagnosis is base if tongue orapharanheal cancer the U.K. nhs have excellent results, I am living proof of that .

    this site or Macmillan site as excellent sites 

    keep in touch come on ask any time 

    Hazel  www.radioacriveraz.wordpress.com my account of tonsil cancer 

  • I've read all of your blog which is very informative and gives me hope so thank you and I wish you good continued health.

    I have my pre op assessment this Wednesday so I think I'll then get a date for the biopsies to be taken. I can't wait to get all these scans and biopsies done and get the results to  get a treatment plan, hopefully.  Not knowing let's me mind run wild with the worst case scenario which I suppose everyone goes through.

     

     

  • Hi Shelly

    thank you for your kind words , to start with I did the blog for me as it was the Only thing  I could control in a situation that was way out of my control This is defo your worst time the not knowing your mind will be in permanent overdrive, I went to my own funeral in my head , I was i a place where you probably are right now. The n h s to be fair works pretty quickly fingers x that all ok for you if you do become a member  of our club come back will get you through this ! Just keep off dr google it’s temoting every 5 mins but please don’t 

    keep in touch Hazel xx

  • Hi Hazel

    I think the blog is a fantastic idea and certainly gives hope to others although I can see the hard journey it was.

    I have been panicking since I was shown a picture of the lump by the doctor, I'm normally quite a calm rational person but have been imagining  my quick, painful demise is imminent. I'm starting to chill out a bit now that I've read peoples blogs etc.

    Thank you for the reply and I will update when I get my results.

    Shelly xx

  • Hi Shelly only too ,pleased,to help ,as the saying goes been there done it read the book got the t shirt !

    Glad to help any way we can.

    Hazel xx