Tonsil cancer radiotherapy

Hello Team

So sorry you’ve all had your struggles. I was about to celebrate twenty years clear of breast cancer when I was diagnosed.....

I've just had my cancerous tonsil removed but whilst looks contained there is not room for 5mm clearance margin and it was at the top of my tonsil. No results yet but scans for spread looked clear at time of surgery although unreported. 

I have two two teenage children in the midst of exams  and have not told them yet. Am waiting for more information but they are my greatest concern. 

I also wondered how small the radiotherapy field can be or is or is it a blanket dose to entire left side of neck even if nodes not involved? Is chemo likely? 

 

thank you

  • Hello all, me again:)

    Hope you are all well and keeping safe.

    I am near the end of week two post treatment and everything going pretty well. However....still having problems with the mucous, or rather a horrible dry sticky feeling at the back of my throat. Strangely i sleep well at night and wake up feeling ok. I cough up a little bit of mucous in the morning but its not too bad. There is some mucous during the day but not too hard to clear. I am taking Carbocisteine to help loosen the mucous. But this dry sensation at the back of my throat is driving me insane. I feel completely stupid as its really hard to describe, it doesn’t hurt and i can breathe fine. I’m not even sure there is any mucous there. But i find it difficult to bear and i have had to start taking diazepam to calm me down.

    Has anyone had anything similar. Maybe having been through the same one of you guys will understand. I am hoping it is part of the radiation damage and will clear as my throat heals. I know we all get left with dry mouth but does that extend to the back of your throat.

    Anyway thanks as always for your replies.

    Take care,

    Shaun

     

  • Hi Shaun yep it’s the healing process our throats take an almighty battering the dryness csn extend all way down almost as if you can’t yet your breath I always have water with mw day and night and constantly sip it are u using duraphat toithoaste snd s alcohol free mouthwash ? As anything else is too harsh I use biotene mouthwash which is quite thick but good. Some  don’t like it but my dentist recommended it 

    I also use yoga breathing deep on hold 3 seconds  and slowly release count to 7 it calms down. Watch the side effect of diazepam fir making dry mouth worse. 

    Hang on in you’ve come this far baby steps will get u there

    hazel x

     

  • hi hazel hope u ok , was looking at your blog again the other night ( always have a look when having *** night just to see the light st end tunnel lol ) but I see u had burn bandages for your neck , can u remember why they were called , I have one patch on my neck that is so so sore ( I do pick a bit ) but I wondered if that would work better for me , thank you speak soon xxxxx

  • Hi have p m yiu xx but for anyine reacingbut bandages were called polymem from n h s and yes they worked 

    Hazel x

  • Sorry yes you did reply thank you , got ent wed might pop to radio therapy see if they will give me some , did u see your own dr for it or hospital xxxx

    thsnks again

     

    maria xxx

  • Hi Hazel, thanks again for your reply. Its been a really tough couple of weeks but I feel like I am starting to turn the corner this week (week 3 post). Just some subtle impovements but enough to give me hope. Breathing exercises do help.

    Maria I was lucky with my neck, no bandages. Hope you get yours sorted soon.

    Take care

    Shaun

  • hi Shaun , good to hear nice when someone feels bit better.  Yea not nice neck is so sore but we all get different stuff don’t we

     

    take care Maria

  • So just had routine blood fbc plus liver function cos have swollen legs , had call from drs reception today say they want all bloods repeated as they are showing abnormal ????? This has now freaked me out I'm about 8 weeks post treatment , does this mean the cancer is still there ? Or has spread to another site has scared *** out me , has this happened to anybody else , or is it cos I've been pumped with so much crap help needed was just starting to feel a bit more positive xxxx

  • Maria, I’m not a medic but I can’t see how routine bloods  would give any indication of cancer. It’s annoying as they should elaborate rather than just say abnormal.  Sorry it’s easy for me but try to be calm and maybe give drs a ring to explain what abnormalities were found.

    Take care,

    shaun

  • Hi Shaun thanks for reply , I think I'm just scaring myself prob , I did ask and she said she was not qualified to read anything over the phone , just wish they would think of other people's feelings xxx