Hi Jane

I also have just been diagnosed with cancer in the RHS Tonsil area ( I dont have any they were romoved as a kid 60 years ago) to say I am scared is some understatement also I am so emotional, I have no experience of hospitals and everthing scares me to death. I have a tosil biopsy next week , I have had biopsy of node in my neck<positive> and a PET/CT scan showing the primary as tonsil area.

First I was told it would be just surgery, then surgery and Radiotherapy and following the PET looks like just Radiotherapy will be used although they want to see the results of MIR scan before final decision.

As far as I know and was told Radiotherapy is very pecise although it will destroy some of the good guys near the target area but it is not a blanket area that is zapped.

I am scared of everthing and anything, especially the PEG thingy and the side effects that will come later, I have a terible gag reflex in my mouth so its the worst possible place to have people poking me about.

But we have no choice and have to face it head on. Keep strong!!

Hi CB,

Try not to worry. I'm just recovering from tonsil cancer and whilst the side effects of radiotherapy is no joy the survival rate is one of the highest of all cancers.

You'll probably get 7 weeks x 5 days (Mon-Fri, weekends off!) of radiotherapy (10-15 mins & painless), plus a dose of chemo on your first day and one about 5th week in. It's Grade A world class treatment. They'll probably test you for a virus called HPV, which if you have, bizarrely increases your survival rate further.

You'll probably need to arrange lifts after first week or so of treatment, as you'll feel *** for driving. Get a rota in place for people to take you as soon as you get your treatment schedule. Taxis other option if hospital not too far away, wouldnt recommend public transport. 

Pre-treatment you'll have a PEG or some other type of feeding tube fitted to your stomach as you'll be living on medical nutrient milshakes for a while as your throat being nuked by high powered X Rays will be "closed for business". Eventually this will be taken out post treatment and you'll wean yourself back on to normal food over a few months, sloppy stuff to start, then more lumpy stuff then tougher stuff to chew and swallow still later (I'm still on semi-solids 4 months after treatment but PEG removed).

Tips :

1. Don't worry about Radio or Chemo they aren't painful

2. If offered some "sedation" for your PEG fitting, take them (benzos) as it can hurt a bit

3. You'll probably have to a have a few teeth out on the side of your cancer. These are any teeth deemed at risk of future extraction as they can cause problems with your jawbone if extracted after radiotherapy. Restorative denistry is an option, I'm just chewing on one side of my mouth at present.

4. Worst time is last week of radio and the week that follows it. After that you'll gradually start to feel better.

5. Relax, it'll all be fine. They successfully treat up to Stage 4 tonsil cancer and once it's gone it doesnt come back.  

Oh, and I lost my wife to suicide early in my treatment (unrelated, Bi Polar depression) so if I can do it, anyone can.

Hi Shaun 

I remember having the same as you describe at about week 5 of treatment , it felt like I was being strangled !! The nebuliser really helped me to clear it as Hazel mentioned , for me this lasted about a week when at its worst . Good luck going forward .

Peter-S

Thanks Peter and Hazel, will ask hospital when i visit tomorrow or maybe just go and buy one!. Did either of you use Carbocisteine. Its a drug and I read it somewhere that it loosens the mucous.

also what did you put in the nebuliser? Just water, saline, or spmething else? They have one in local argos so  might just go and buy that one. Dont think i can stand ankther night without one...

thanks

Shaun

Hi Shaun , I was given saline with the nebuliser which worked well 

Hi

Husband is 3 weeks post radiotherapy for T2N1M0 tonsil cancer spread to lymph node (tonsillectomy and 6 weeks radiotherapy). He has done well really but is struggling with extremely painful back of tongue which makes anything other than soup, yoghurt, ice cream and 8 Fortisips a day very difficult to get down. He did have a RIG but it fell out 2 weeks post treatment and as he had only used it once, the dietician was happy for it to stay out. He is getting frustrated that the painful tongue isnt improving. No pain relief seems to help, nor does Gelclair or Oxetacaine before meals.  He has only lost 1kg since start of treatment, but is getting mightily fed up with Fortisips!  Has anybody experienced this and how long might it be before there is an improvement?   Soluble Asprin gargles dont help either.  Any advice welcome. The lump in the lymph node has shrunk dramatically, does this continue. Hes due PET scan early December. 

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

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

Hi Maria not being a medic can’t say for deffo , but remember yiuve been pumped full,ofvradiotherapy and chemo your body s taking a battering. Try not to worry easy to say I know just remember how far youve come , as far as I am aware routine bloods don’t show cancer either new or spread only thing as far as I am  that can tell that is MRI scan so , you could be showing an infection in your bloods ?  Will p m you Hazel xx 

Again am nit medically trained sometime drs surgery’s don’t really understand the fragility that we are facing and it’s a matter of fact to them x 

Hi Hazel hope your ok , 

i know think I'm just reading too much into it , they really don't realise that a few simple words like abnormal what it makes you feel like xxxx

maria xxxx

Hi Maria

have p m you as well.

yes am good cycled 44 km today ! Just look at me as inspiration keep strong .

H x

I know you truly are an inspiration you really are xxxx

maria xxx

Thank you just ain’t going to let Cancer Define me !

Hazel xx