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 somrelueved you understand my nail predicament!!!!!  compareD to cancer that onky took 7 weeks a broken nail can take 3 months. Lol only joking.a you will realises  ia sense of humour is paramount. 

Tomorrow off out for lunch with 2 guys and their wife’s who we went through treatment together and meet up every 3 months and we all moan at each other ! Justbgoes tomshow speaking to you  fellow Sufferers during treatment some good can come out if it. 

Keep in touch and hold your head up high on Monday walk tall and tell the mask like I did the treatment is going to hurt it more than you !

  Hazel 

Hi Shaun, thanks for your kind words. Yeh it was unbearable at the time, but it's not any more, even with my friend passing recently (she was my wife's best friend); both vibrant women in the prime of their lives in their 40's. I don't drink alcohol anymore at all, I face it and deal with it. Dry mouth and swallowing improving slowly, grief I'm managing to keep under some kind of control, time and counselling helps I suppose. However the main thing I've learnt is the human spirit for survival is so strong it can overcome the worst of situations. Yours is not the worst, in fact in a year you'll look back and and be proud of beating this disease, and the memory of the tough times fade away gently. 

Your Oncologist has probably got your survival rate wrong, yours is such a "good" diagnosis for tonsil cancer that if mine was 94%, yours should be a higher. I'd ask him to be more specific and quote mine if you like.....bit wooly "better than 50%" he hould be more accurate. I mean 99% is better than 50% isn't it? 

I'm not an Oncologist obviosuly but I know mine was brilliant and told me everything i needed to know, including an accurate cure rate. Which is what you really want to hear. I would bet my house it being in the mid to high 90%'s. The % rate of those that don't make it also includes people who don't want treatment, start treatment but don't finish it, people with other health matterss and old frail people as well. 

Try and keep your sense of pespective and a bit of dark humour goes a long way. It's only with hindsight that us that have been through it can say these things, so it's quite normal for you to be worried at this stage, but try not to fret too much, its just something to be overcome, life could have dealt you a worse hand. 

Don't forget you get weekends off, just like going to work, and it's a short treatment at the hospital Mon-Fri, so stock up on some books, music or TV series, films etc, or whatever low intensity interests or hobbies you have as you will have plenty of time to fill. Get friends & family to arrange a rota for taking you to hospital and back, seeing someone, or ideally different people rotating taking you there and back gives you a mental lift and forgetting about cancer for a while, talking about normal stuff going on in their lives and the outside world.

One day you'll be the one giving advice to others on here. Don't take mine as gospel, it's just my personal experience, but I have been through it, so it's all true as far as I'm concerned!

Best wishes, 

Mark (aka Hilts911)

Hi Shaun , I am currently post treatment at the end of recovery week 6 . Your treatment plan is the same as mine was . I had left tonsil as the primary area and 3 areas of lymph’s requiring treatment on the left of neck , one of which that was prominent , early on through treatment the largest one shrank quickly followed by the other 2 , to physically see and feel these shrinking almost daily was a huge boost so I imagine this will be the same for you . Regarding pain relief I was and still take co cocdomol daily and some Oromorph only when required between co codomol , my worse pain was in the first 2 weeks post treatment . I was T2N2 and my consultant took one look in my mouth and said “ we can sort this , 6 weeks treatment , job done “ . 

Its a tough battle but you will be fine . There are so many helpful people like Hazel on this forum , all of them a great source of support and information . 

Best wishes , Peter 

You 

Hi Peter thank you fir kind words. Welcome to the world of recovery. Like I say baby steps ok some days 2 steps  forward and one step back but I am nearly a year post treatment! Where’s that time gone ! Yes think Shaun’s oncologist a bit abrupt yours like mine quoted 94% I was also T2N2NM so onward n upwards from here. Word of advise when u start to come off oramorph do it gradually 1 mil at a time over a period of 3 days in between n you will be fine 

good lucj

hazel

Thanks again to you all for taking time to reply, will post periodically to keep you updated.

Sorry one last question. I cant tell where neck lumps start and stop. Particularly my right neck has a hard lump but the surrounding tissue has recently become soft, swollen, and tender to touch. Did anyone have it similar, is the swollen tissue part of the lump or some sort of lymphodema. I’m sure will have it answered tomorrow but it’s scaring me now:)

Think it all varies person to person Shaun to be honest. Don't worry, some peopel have small lumps, some larger, some harder, some softer, they will sort it starting tomorrow, but worrying won't. 

it won't be lymphodema as you haven't started radiotherapy yet. Lymphodema is a side effect of radiotherapy nuking your lymph nodes that drain away fluid, leading to a swelling in the affected area. I asked to be referred to the lymphodema clinic after my treatment (as some swelling under chin); They said it will fade away over time, and gave me some exercises to do if I wanted to speed things up. 2nd appointment they said its now so minor we're signing you off. Nobody in my medical team seemed overly concerned about lymphodema, more of a minor side effect it seemd to me.

Hi Shaun

like markbsats everyone's lymph lumps are different some days mine was soft some days hard some days both. What the lymph nodes do is kind a waste disposal system catching the dead cancer cells and holding on to them. Likewise lymohidema doesn’t start until radiotherapy gets well on way sleep well tonight hold head high in morning. Today had lunch with 2 guys n wife’s whi went through treatment a year ago n niw we are well enough to eat out and laugh about our radiotherapy sessions  a year ago we were all in your boat wondering all the negative thoughts hazel 

Hi Shaun , Sorry for not writing sooner , lifes been a little hectic since hubbys diagnoses !.... anyway here whats been, happened & gone! "BRIEFLY"!! "could never tell you everything on here ! ... Hubby was diagnosed with stage 4 right sided tonsil cancer which had spread to the soft pallet & lymph nodes on both sides of his neck ... think that looks a bit like this : T4-N2-M0. .. Treatment was initailly 6 back teeth out , followed by peg tube being fitted prior to treatment "if your advised to have a peg ..please do so!".. it really is a life saver !! .. ok onto the chemo ... Hubby had to be admitted for his treatment  as he had 5 consecutive days with a two week gap followed by 5 more consecutive days ... bit harsh but hey he was still smiling through it all ... prior to radiotherapy he was admitted for one overnight chemo then as soon as it ended he was sent straight into the radiotherapy unit to get his first session done , from there on he attended radiotherapy daily for 30 days , two weeks before the end of the radiotherapy he had another chemo which was also overnight in the hospital ... he started getting pain 4 weeks into radiotherapy & swallowing became impossible by the end of the radio , unfortunetly he did get pnuemonia twice after the treatment had finished , this was due to him aspirating his feed from the peg as he just couldnt tolerate it being done overnight when he slept .. we tried propping him up & slowing the dose ! but it still happened ... we had to adjust everything & ended up bolus feeding the small fresubane bottles into his peg ... he lost 4 stone in weight  ... but hey nobody said it was gonna be easy !  ...its a hard journey & theres no hiding that fact!!.. things do go wrong & youll be tested to your limit!!...but its  so worth it when they tell you that your looking good & theres been a COMPLETE RESPONSE TO TREATMENT!!! :)))... so dig deep  ... you got this sh#t!! ...  take anything your offered Shaun ....theres no badges for being a hero when this guy comes to town!! ... keep strong .. cant say be positive cos I hated that saying lol ... last thing you feel deep down is positive!! ..but try !!! ...you got this!! .. sending lots of Cwtches!..."hugs! "

Also you can discuss with your Oncolgist which type of feeding tube will suit you best (for those newly diagnosed), PEG or RIG.

I had a RIG and it was fine, easy to use. This is put in direct throught your stomach not down your nose/throat.

Hi Cariad, thank you so much for taking the time to reply. It sounds like you’ve both been through so much but you have come out the other side and things now on the mend. Tomorrow marks half way through treatment for me and lets say no surprises so far :) mouth is already pretty sore but my oncologist is not shy with the pain control. No feeding tube yet so we’ll see how it goes. I’m certainly no hero and will take what’s offered to get through this. 

Hi Cariad, thank you so much for taking the time to reply. It sounds like you’ve both been through so much but you have come out the other side and things now on the mend. Tomorrow marks half way through treatment for me and lets say no surprises so far :) mouth is already pretty sore but my oncologist is not shy with the pain control. No feeding tube yet so we’ll see how it goes. I’m certainly no hero and will take what’s offered to get through this. 

So glad your coping well so far Shaun , Yes its been a tough one & still a few hurdles to go but fingers crossed! itll all be ok soon ! .. sorry I couldnt reply earlier as we have bought a motorhome 6 weeks ago & have decided to just travel & enjoy ourselves so internets a bit naff on my phone ! ...we're home for today &  we're off  down to Amroth in the morning , got a nice little pitch besides the beach waiting for us !.. definitely enjoying the R&R after all this last year has thrown at us! ...sending you our best wishes !.. take care ! .. 

Hi ShaunW,

Hope your staying strong, I know it’s not easy, I'm in my 11th day recovery as I had it in the base of my tougne & in both lymth nodes so I had a PEG fitted then 4 all dayers of chemo & 6 weeks of radiotherapy. Believe it or not I have had more pain sense the end of my treatment that I did going through it & the one saying that is getting me through it is ‘it doesn’t last forever’. Good luck lovely & you got this x

Hi ShaunW,

Yes, you shouldn't be in any pain. Oncologist should ensure adequte medication for you to remain pain free. A bit sore in certain areas perhaps but not real pain.

Good that you don't need a feeding tube yet, a good sign. If you need one they'll sort it. 

My only problems since being given the all clear is lack of saliva and the eating/swallowing only progressing slowly. i think that will come back eventually as I can see progress however frustratingly glacial, but might be stuck with Dry Mouth long term. Suppose chewing sugar free gum and carrying a small bottle of water around is a small price to pay for being alive!

Thanks again to you all for your words of encouragement. I’ve just finished week 4 of 6 and started to loose a bit of control with the pain. My oncologist and his team have been amazing, it’s just these bloody mouth ulcers really kicked off this week. Plan is to review again on Monday and up the strength of my patches. I have worked hard with eating and have even put on a pound through it all. Another poster on here recommended Huel and it really has been a lifesaver. For some reason it doesn’t aggravate my mouth the same as regular food. I just make it with full fat milk and cream, giving a nice high calorie smoothie.

Hi Hilts, yeah dry mouth a big problem. My water bottle goes absolutely everywhere with me; I couldn’t survive for more than a few minutes without it. If we can get through this with just a dry mouth then yes its a small price to pay

Hi 6G, phew four full days of chemo sounds really tough. It must have taken a lot out of you. I’ve only had one so far and i hated it; worse than the pain in some ways.

Cariad you get out in that motorhome and enjoy every minute We have a static caravan by the coast at Formby. I love it there and dream about getting out there to recuperate.

take care all. 

Shaun

Hi Shaun this is Hazel aka radioactiveraz I am now 1 year post radiotherapy for tonsil cancer h p v 16. Yes I still have dry mouth but am having acupuncture and it seems to be working my mouth now feel s moist. A tip I use xyimelts at night time just half one one and I get a good sleep now every night. Order online the mouth ulcer company. Too early for u while in treatment but worth trying. Water follow s  me everywhere I still can’t drink tap water only bottled .

i too had a mouth ulcer full length of my tongue from week 3 to about week 8 of post radiotherapy I was prescribed gelclair it’s good . 

I got to Spain week 8 post treatment it was sheer grit and determination like u with static it’s good to have goals . Have updated my blog last week give it a look if u want my perspective on it.

Keep in touch. Good luck hazel

www.radioactiveraz.wordpress.com 

Hi all, just finished my treatment yesterday and have dveloped an awful mucous plug at back if my throat. Mouthwashes and humidifier don’t help and its driving me insane. Was in full blown panoc last night as felt i could not breathe. Any recommendations on what will help to loosen the mucous.

thanks,

shaun

Hi Shaun have the hospital,given yiou a nebuliser ? That’s about the onky thing that I found worked in the early days , what it is it’s your body’s system teactingbtomthe harshntrratment amen creatung more mucus tomrry and protect ut m are yiu abke ti drink water ? If simsoda water is good as the bubbles helomto break the mucus or try Luke warm water or Luke warm tea  green de caff I’d poss  or any herbal tea ?

its the joys of recovery , plus I was using a box of tissues a day in the early weeks.

other than that well done on completing treatment now the hard work begins ! Drink. Drink drink water is a good motto as it does help tomyhin the mucus 

Hazel

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