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 Peter. Glad to hear you are continuing to progress, thank you for kind words ! as they say been there done it gotbthe t shirt read the book etc. But yes agree protein is the key along with gentle exercise, ive read in the first year W should be trying to eat the equivalent of running a marathon a day just to repair what treatment did muchneasier said than done , I still have bad eating days  but always have Ensure in the fridge for this evening just in case days , hubby fancied pizza the other day and salad two words which really put dread into me but though hey he’s suffered enough so gave in ,yep couldn’t eat much if it so out popped the trusty Ensure to Ensure I got enough in my body to enable me to carry on biking. 

Rant over lol

Hazel xx

Hi Maria, so sorry you are finding things difficult. I am 6 weeks post, my mouth is still pretty sore but generally i’m doing ok. Just a few suggestions for things that worked for me.

is the throat gunk mucous? I took Carbocisteine for my mucous and it really helped by thinning it out so i could cough it up.

I have been surviving on Huel right from the start. Nutritionally it’s way better than the stuff the hospital recommended (Fortsip...yuch!) and i’m convinced it has helped my recovery. If you decide on it get the powder (not the premixed); it tastes better and you can mix it with anything you like

What pain meds are you on. I had a mix of fentanyl patches, liquid morphine, pregabalin and paracetemol. Don’t be shy asking. Also i mouthwashed religiously with a mix of salt, bicarb, soluble asprin.

Meditation or other relaxation therapy to help you feel better and help your immune system do its stuff. 

Take care and remember this WILL pass.

Shaun

Thank u again for all your reply's , I just seem to have down days ,I just want to wake up one day in no pain and be able to eat lol , but no pain no gain and at least I'm alive thank god , all your stories and suggestions really do help more than you know , so new day tomorrow , gonna have a pamper day I think , do my nails , dye my hair and hopefully will make me feel bit more human , 

good to know everyone doing great , and once again thank you all

Maria xxxx

Hello, 

I really hope you don't mind me asking but I am concerned there is something wrong with my tonsils that is causing me so much pain. It's definitely not tonsillitis or anything. I have been referred to ENT because of my severe sort throat and neck pain. They said everything was clear and that my tonsils were a little swollen. They have got me another appointment to have an x ray of my throat basically drinking a liquid to highlight the areas. I do believe that my tonsils are the problem that I've had for 5 months. What symptoms did you get for tonsils cancer? Is it easily missed just by having a camera down your throat which is what I had first. 

Hi sophie ie in my case I had ni pain no sore  throat  no nothing onky a lump above my collar bone I could eat and drink perfect,y well .  The lump  put me on 14 day cancer pathway and the camera picked up tonsil cancer , so if youve  had that via ent consultant Andy  I am not medically trained but would take comfort in what they say . Go and do the  next course if treatment that they want to try re the ent consultant s do see  lots of different diagnoses every day only a small,percentage turn out to be cancer .i was one of the 1% of the unlucky ones 

Hazel x

Thank you so much for your quick reply! I just don't have a clue what could be the cause of my sore throat it's like I swallowing a load of blades but my tonsils look swollen and raw red. I also truggle to swollow and eat full meals without feeling sick. The neck pain is horrible as well it's like someone has kicked me in the back of the neck and causing me headaches and earaches. Surely it can't be nothing? I'm relying on painkillers just to take the edge off things. It sounds like a lot of consultants are putting these symptoms down to anxiety which in my case is definitely not true. 

No,problem like I said I had no,pain what so ever which in tonsil cancer quite common , aren’t yiu gargling with salt water or baking powder and salt mix to try and smooth yiurnrhriat 

hazel x

Yes I've tried everything :( even my GP has given me throat sprays to ease the pain but it's done nothing. I'm worried if I continue to take paracetamol every day it's going to effect the rest of my body x 

Hello fellow travellers, has anyone worked out the secret to getting some sleep at night. I’m 7 weeks post treatment and my sinuses have kicked off, especially blocking up at night. And when i open my mouth to breathe it drys on completely and wakes me up. Tried all the nasal sprays, decongestants, humidifier, a dozen pillows, but nothing seems to help. Anyone further down the line, any hope of the dry mouth improving...

thanks,

Shaun

Hi Shaun 

I am 4 1/2 months post treatment my sleep is still sporadic but has generally improved a lot , I found Biotene gel helps with the dry mouth , I have tried the xylimelt tablets which stick to the gum and slowly dissolve , these I find a bit hit and miss , working better on some occasions than others . It's a difficult one finding what works best for the individual . I haven't had any medication for months now and my sinuses have been blocked for a few days so I bought some night nurse which seems to help with the sinuses and the sleep . Sometimes the gel doesn't last all night and if I wake with dry mouth which is getting rarer now ,I have a sip of water , renew the gel and back to sleep . Good luck finding what works for you . Keep pushing , it's early days .

Pete

Hi Shaun 

I am 4 1/2 months post treatment my sleep is still sporadic but has generally improved a lot , I found Biotene gel helps with the dry mouth , I have tried the xylimelt tablets which stick to the gum and slowly dissolve , these I find a bit hit and miss , working better on some occasions than others . It's a difficult one finding what works best for the individual . I haven't had any medication for months now and my sinuses have been blocked for a few days so I bought some night nurse which seems to help with the sinuses and the sleep . Sometimes the gel doesn't last all night and if I wake with dry mouth which is getting rarer now ,I have a sip of water , renew the gel and back to sleep . Good luck finding what works for you . Keep pushing , it's early days .

Pete