Hello all

Hi I’ve just come across this site an been reading how people have been gettin on with tonsil cancer I was diagnosed in December left tonsil had 3 lymph nodes out an it was found i 1 of them I started treatment 14th January 5 sessions of cemo but only managed 3 an 30 sessions of radiotherapy I’m almost 12 weeks from treatment an I’m still struggling with eatin my mouth is still sore I’m on 6ensures a day I struggle to get anything down if I do my mouth just goes sore I’m due to have a scan on the 20th of this month but I’m thinking it’s to soon they have said it might still show up that something is there but doesn’t mean it cancer it could just mean that it hasn’t healed properly yet an if it does they would leave me 4 weeks till 16weeks out of treatment an scan me again so I don’t see the point in the scan at 12 weeks because if it does show up that there is some thing I’m just goin to worry about it for the nxts scan I’m just really stressing my self out thinking that it is still there an that’s why I’m not healing I’m only 35 I had test an got it from the virus I had a 80% survival but I’m feeling like I’ll be the unlucky 20% x

  • I forgot to say I had left tonsil removed I hope I’ve posted this on the right site x

  • Hi nicola yes you've got the right site I'm afraid there's a few people with tonsil problems on here it can take a while to find them, you can try tonsil on,, search,, it might find them or hopefully they'll find you good luck.

    Billy 

  • Hi Nicola,

    I have re posted my reply to you on another thread in case you don't see.

    Am sorry to hear of your diagnosis and joining our unwanted little club.
    You will have see from a few of the posts that some recover quicker than others while ome take a little longer. I'm same as you and taking longer to recover and struggled with appetite and fatigue being the main ones post treatment. I lost a lot of weight in a short period of time and was on 6 ensures a day for a period and then stopped. I was then put back on supplements around 6 weeks ago and have been told to take them for at least another month and my treatment stopped last November so its been a long haul.
    I would say its better now and am able to east most thngs again but still have fatigue issues and sleep is still fragmented and still get really tired. How is your fatigue doing as there is a correlation with your diet/appetite etc with fatigue. I went back to my support team around 6 weeks ago and they explained a little more about good calories and wasted calories and should concentrate on nurtitional value etc.
    I have kept a blog from the get go, warts and all and it pretty much logs my journey throughout with the timelines broken up into sections as well as a section with many tips picked up along the way. Ive posted the link below for you to have a look at and you might find it a helpful insight.
    As for your scan its pretty normal to have CT/PET scan after 3 months but like yourself, I was warned there is a high chance of what they call false positives as the back of throat will still have swelling and may show up lights from from the dye they put in. I was told if that were the case, dont worry about it and they would wait another 3 months and do again and this would happen in approx 60% of patients according to my consultant.
    I suppose one of the benefits is that, like myself, it showed I had a positive response to treatment so it does lift your spirits although it does not mean, like a lot of people around me assumed, that all my side effects would magically disappear overnight.
    I understand your point of view but from a clinical point of view its probably some baramoter how treatment went and how back throat is in some detail, but with the kicker that you might need re done again in few mths time.
    Its a double edge as you will be pleased to get a positive response but frustrated at maybe having to have re done. I would say the thing is to try not to overthink the scan thing,although not always easy, but recogise we know in advance and told there is a high chance of false positive readings and not to be alarmed about.
    I hope this helps in some way, but please keep me posted with progress and let me know if there is anything I can do to help in anyway at all. Also happy of you wanted to friend request if its easier for you to chat more on a one to one basis and for posting/replying.

    Stay positive my friend and the succcess rate from this treatment is really high and the light at the end of the tunnel really exists. It just comes with really naff side effcets over quite along period of time

    radiotherapythroat.home.blog

    kind regards
    Ian

  • Hi nicola I've found three that might reply [@DebsP]‍,, [@Ant1073]‍ and [@Mariag123]‍ hope they help. 

    Billy 

     

  • Hi Nicola like iam I have replied on a different post to you 

    ask away any questions 

    I have a blog www.radioactiveraz.wordpress.com  giving a week bybweek story of my tonsilmcancer diagnosis treatment and recovery with links to Ian’s on it

     

    keep in touch

    hazel

  • Hazel thank you so much I will have a read x