Hello There

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Just had a recent diagnosis of mouth cancer, affecting my tongue and possibly my lymph nodes.  Don't know what to think or how I feel, totally numb.  Have had a biopsy shortly followed by a MRI Scan and a CAT scan, so really moving fast.  Can't decide if that's a good thing or not...... Have an appointment on Wednesday to meet my Consultant and a PET scan booked also.  I know I've to have surgery to remove the tumour from my tongue, that's about all I know just now.  I'm really scared that I won't be able to talk properly afterwards. Hope to know more next week.  Any advice would be appreciated. Thanks

  • Hi BVB welcome to the community. So sorry to see you here but it’s a good place to be for help advice and support. Once you have oral cancer they do move fast but that’s a good thing. If you need radiotherapy there is much planning to do and all that takes time. I had tongue cancer and I’m now three years clear of treatment. 
    Try not to worry about being able to talk. Most of us do really well. Whereabouts on the tongue is the cancer? 
    I didn’t have surgery at all, just RT and you wouldn’t know there was anything wrong now at all 

    Take somebody in with you fir your appointment if you can. An extra pair of ears to pick up what you miss is invaluable. Make sure everything is explained so you understand and that you have contact details for your clinical nurse specialist who  should be a port of call for info in between appointments. 
    Best of luck and come back when you know more so that we can better help you 

    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 BVB09, Things do move along very quickly, so that your team know what they are dealing with, then they can plan the treatment that you need, when they have all the information and your treatment plan, it will all be explained to you, so ask them as many questions that you have, they will be only too happy to answer them. When you have your treatment plan and it gets under way you will feel a lot better about it all then. It is all very scary at the beginning, but you will be in good hands. Many of us on here have had similar and are still here to tell the tale, if you have any questions just ask on here, someone will always come back to answer if they can. All the best to you  keep us updated.

    Regards Ray.

  • Hi BVB Welcome to the community sorry you’ve  found yourself here but you have come to the right place.i am over 3 years post radiotherapy for orapharangeal tonsil cancer with several effected lymph nodes. i didn’t have surgery but had 35 radiotherapy and 2 chemo sessions. The best advise I can give you for now. echos Danis.Take someone with you with a notebook to write things down your brain will you turn to mush.plus please keep off dr Google you will only scare yourself. We’ve ll been there this is the worse part the waiting for everythjng to happen Pop back on anytime someone will always answer your questions 

    Hazel 

    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/

  • Hi BVB09 and welcome to the forum.

    I was diagnosed with base of tongue cancer in May 2018.  I had robotic surgery to remove the tumour plus a neck dissection followed 6 weeks later with radiotherapy.  I understand your anxiety about not being able to speak properly afterwards.  I don't have a problem.  I do have an extremely poor voice but it's not due to the surgery on my tongue.  

    As has already been mentioned, there are lots of us who have had similar diagnoses and treatment and we're still here so you'll find plenty of support and advice should you need it.

    It's great that you're having all your scans etc quickly so your team can look at the results and plan the appropriate treatment for you.  Please resist the temptation to google - you'll read all sorts of things that are not relevant to your diagnosis and will mislead you.

    Good luck with your appt on Wednesday.  It would be great if you can take someone with you for an extra pair of ears to pick up what you might miss or ask questions that may not occur to you.

    Linda x

  • Just saying Hi. Lots of good advice offered already so not really anything to add at this stage.

    Peter
    See my profile for more details of my convoluted journey