Hi, Newbie here….

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Hi Everyone 

Not really sure what to write really so I’ll just give you a jist of the story so far….

I was diagnosed with a malignant tumour in my neck and after much testing it was found that it was due to a tumour on my left tonsil. This was caused by the HMV18 Virus which there isn’t a lot known about. It’s a virus that can lay dormant in the body for anything up to 30 years and it’s not known what can ‘trigger’ it into awakening and mutations into cancerous cells.

I was lucky to notice a lump on my neck early, especially, after having it all remove in surgery on 2nd Feb (the day after my birthday!) it is found to have been quite aggressive. I have been advised that I’ll undergo 6 weeks of radiotherapy with 3 sessions of chemo along side this. I have no idea what this means. There has never been any cancer in my family so we have no experience in what is involved. I have no idea what to expect. Sickness? Level of pain? Level of mobility? etc. I only came on here to research radiotherapy if I’m honest.

It’s all happened so quickly, which I appreciate means I’m very lucky as my recovery rate is high but it also means my family and I are running to keep still in a way. To keep ourselves updated with procedures and tests….

Anyhoo…..that’s it from me, for now I guess.

Off to look up radiotherapy on here somewhere 

Take Care Everyone

  • Hi, MadMuppet, welcome to the group, nobody  wants to join, however we are all here to help each other if we can. Firstly please stay off Google. Radiotherapy and chemo are about the standard treatment for our type of cancers, to be truthful it's not a walk in the park, but it is doable, and many of us on here have done it and are here to tell the tale. As we are all different it does affect us in different ways, but you can and will be able to do it. Keep us updated, if you have any questions, just ask, someone will always answer if they can. All the best to you and your family.

    Regards Ray.

  • Hi Madmuppet and welcome. I think you mean HPV 18.

    HPV 16 and 18 are the ones that cause cancer. Most of us here are HPV 16 positive, with 18 being a small percentage. Nonetheless HPV positive cancer is eminently treatable and cure rates ar around 95% so hold on to that

    I have a blog linked at the bottom of this post that might help you see roughly what's to come. 

    Don't bother with Google. A lot of it is inaccurate and frightening.

    Radiotherapy is a tough treatment but taken a day at a time we all get through.

    I am three years clear of 6 weeks of RT and well.

    Stick around. We'll get you through

    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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  • PS Have a look at one of the blogs on here too. Mark has written a diary HERE which is pretty good 

    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 MadMuppet and welcome to the forum.

    I was diagnosed with base of tongue cancer in May 2018 and finished my treatment in August of that year.  I had robotic surgery to remove the tumour plus a neck dissection followed 6 weeks later with radiotherapy.  Mine was HPV driven.

    Your treatment plan is the gold standard for this type of cancer which responds extremely well to treatment.

    There are numerous side effects but as individuals we all respond slightly differently in that not everyone gets the side effects to the same degree.

    It's not an easy treatment to go through but there are plenty of us who have done it and come out the other side.  There are medications to help with the side effects and it's important to take them proactively rather than as a reaction to pain as it's easier to keep on top of any pain this way.

    Rather than bombard you with loads of information at this stage read some of the blogs as Dani has suggested to get an idea of what to expect.

    Lots of people here for support and advice should you require it.

    Linda x

  • Hi Mas muppet welcome to the club I too had lump in collar bone and right tonsil SCC along with 7 lymph nodes  keep off   Dr Google  inhad 35 radiotherapy sessions and 2 of planned 3 chemo it’s nit easy but I did it. My blogs below with links to other sites. Stick with us on here we will all help you. I was h p v 16 positive which is a good indicator as tumours h o v respond very well to treatment imm3.5 years post treatment 
    Hazel,xx

    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/