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

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. 

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 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 

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