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.

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 now  15 min post radiotherapy and dry mouth is still my biggest moan .ok it’s better than the earkybdays but for  example today as been a bad mouth day no ryhme  one reason for it well apart from me saying to hubby this morning umm my mouth feels pretty good .Will I never learn don’t say it out loud !

but like Peter says the bio tend  gel rubbed  unto gums at night does help , I still swear by half a xyimelt. Every night I now get at least 7 solid hours just the odd sip of water no longer 3 glasses n loo trips. Ok no help  to you now just to proof that it does eventually get better. You do need some saliva for the xymelts to work. 

Are you using alchol free mouthwashes ? I use bio xtra which I find good. 

Late you still on any medication s ? As they can interrupt your sleeping patterns .re sinus sorry I can’t help with that other than have yiu tried olbias oil either on your pillow or the stick that you sniff ?

At your stage I did my utmost to breath through my nose and onky out through my mouth try pulling sheet over your head to create a moist atmosphere. I have also started acupuncture have had 6 sessions and it has helped my dry mouth. It really is the pits onky us going through it really understand where yiu are coming from. I also discovered that my uvulva or dangly bit at back of throat git melted during treatment try looking in a magnifying mirror as thatbis also a gland that shoots saliva down the throat I didn’t discover mine had gone until a year after treatment .Another tip if you can tea and coffee dehydrate so try herbal or at least decaf drinks .same with sodas they dry yiu as well. Good old plain water 

on a plus point I’ve just cycled over 800 km in Spain so there’s is light at the end of the tunnel 

Hazel x

Thanks Pete and Hazel, yeah I know its early and I’m actually doing pretty well; almost off all pain meds, eating and tasting most solid foods. I’ve got some saliva but it disappears at night. I am pretty strict on diet, so no alcohol, caffeine, or other nasties.

I’ll definitely try the xylimelts, biotene gel and got my next acupuncture session next week

Hazel, sorry you lost your uvula i must check mine. But amazing effort cycling round spain. I did a bit of cycling back in the day and remember some brutal mountainous  rides in the heat, and wind of Lanzarote.

take care,

Shaun

Thanks Pete and Hazel, yeah I know its early and I’m actually doing pretty well; almost off all pain meds, eating and tasting most solid foods. I’ve got some saliva but it disappears at night. I am pretty strict on diet, so no alcohol, caffeine, or other nasties.

I’ll definitely try the xylimelts, biotene gel and got my next acupuncture session next week

Hazel, sorry you lost your uvula i must check mine. But amazing effort cycling round spain. I did a bit of cycling back in the day and remember some brutal mountainous  rides in the heat, and wind of Lanzarote.

take care,

Shaun

Hi Shaun thank you my cycling been iver a period of 7 weeks due hime thus weekend so wontbget much cycling in the win andrain if home. Done a few hills  this time  temperature been  around 28 so pleasant but am just pleased to be out. Yes have a look at xyimelts I get mine from mouth ulcer company online plus in day time chemo xyitol chewing  gum constantly that does help. Check the labels in sugar free gum need xylitol to be the it’s first ingredient before sorbitol which dries you good re caffeine n no alcohol  let me know what u think to acupuncture? 

I know we all want torun before we can walk but recovery is baby steps not giant   leaps  just wish the hospital s woukdntbusgeneei oh in a few weeks in woo be back to normal ! 

Yes have a goodnight look at uvulva I don’t know when mine melted !

tak carehazel 

Hazel 

.

Hi so sorry to hear of your diagnosis , I'm nearly 3 months post treatment , and to be honest I'm still in shock , don't think you take it in for a while , and once treatment starts that takes over and u don't have time to think , I had 7 rounds of chemo ,one a week , then six weeks every day apart from weekends of radiotherphy , to be honest they only takes about 15 min , are you far from hospital ? I had a two hour journey every day so it seemed to take up whole day , there is no pain in any of the treatments , the radiotherapy is the worse one , and the side effects are not nice ( I'm still suffering ) but I'm  alive so that's the main thing , no one person is the same so all our side effects are different , if you read radioactive raz blog she gives a no hold bar of everything , and she's lovely will always  help or give advice if u need it , she has been my saviour many a time , hope everything goes well with scan , keep us informed xxxx

Thank you Maria for your kind words ,as the saying goes been there  git the T-shirt read the book etc .only too pleased to help anyone throughit. Have already accepted friend request from Cornwall mum xx hope u r ok and the rains not effected you. 

Set iff hime at weekend brrrrrr am ready for home though lol x

Hi as Maria says the radiotherapy doesn’t hurt at the time ,the journey to and from hospital takes up the time. The after effed to start around week 3 of treatment gently to start with then gradually build up .

ask at your m d t meeting for tumour size and any spread and are you h p v 16+ which makes a difference to treatment .

Try and keep off dr google so much bad and miss leading info it scare you. Like my oncolgist says in 5 mins on dr google even he could self diagnose himself dead . Keep on here recognised blogs and macmillima have a community web site .

keep in touch private message me if you need anything have accepted your friend request .easy for me  to say I know but try and keep calm ,one cry a day is allowed. .

positive mental attitude git me through it .

Hazel xx

Hi Hazel no problem you have been lovely , oh bless you weather awful here lol but sometimes nice to be home , take care gonna have nice afternoon kip now lol 

maria xxxx

Just had mine quick 20 min power nap sees me through it yes deffo ready fir real life here’s great but we live a fantasy life it’s nit real. Lol xx

Hi Cornwall Mum , sorry to hear you are joining this club , you will find some great advice and encouragement from this forum , being told you have cancer is like being hit with a sledgehammer ! I was diagnosed in April , 6 weeks of radiotherapy from mid May to the end of June with 2 days of chemo . I found the radiotherapy and Chemo ok , you don't feel a thing , the skin to my neck became red and sore but has now healed and is a normal colour ! The side effects post treatment for me was the hardest period. I know exactly how you are feeling at the moment , but you will get through this !!
The only good thing about this type of cancer is the high cure rate which is a real positive to hang on to. I got the all clear on the 2nd of October , a date now etched in my mind for ever .Dont hesitate to ask any questions on here as you will get sound advice which I found invaluable . Good luck , everything will be fine even if it doesn't feel like that for you at the moment . 
 

Pete

Oh god wish I could just have a power nap but I can't. , never got to sleep bloody dog wouldn't stop pestering me lol , I'm not sleeping at night that's the trouble so I'm bloody knackared all the time , hoping as I've not had any sleep today I might sleep tonight. , yea that's the trouble it's not real life is it be nice if it was haha cxxx

Took me months to have a full nights sleep at least 7 months or so n whatbwith water for dart mouth am uo for loo some nights although this trip I’ve done a lot of 7 hour sleeps !!!!!!!!! The xyimelts do help with dry mouth 

fingers x for u tonight H x