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 Hazel 

I am currently 16 days post treatment which consisted of 30 sessions of radiotherapy and 2 of chemo over six weeks ,everything luckily seems to be on the mend but I am experiencing some dryness to my mouth caused by the saliva glands being battered ! Has there been any improvement to your dry mouth ? are you producing any saliva ? I am really hoping I get some improvement as this is quite tough to deal with . Obviously everyone is different and some people I have read about are lucky enough to regain some natural saliva production . I just worry about how to cope with this long term .

many thanks 

Peter

I finished my treatment in Nov 18 and to date only a slight improvemnet in dry mouth. I am told "it wll be ss good as it gets 2 years after end of treatment" but it won't be 100%. You'll just have to wait and see/ I had 35 sessions of radio so you might be a little better off thn me having 5 less. 

After experimnting with alos the artifiial saliva sprays and gels I;m not using them anymore, especially the Bio-Extra Dry Mouth which strips the enamel from your teeth (can't velieve this range of products is allowed to be precribed.

I find using the Duraphat 5000 toothpste s often s possible plus the Colgate Flouriguard Dental rinse mouthwash are the best way to keep your teeth safe and help with dry mouth. Find a small sealable bottle and decant some mouthwash into it so you can carry it around in your pocket, it will be enough to last you all day. Also what seems to work exremely well is sugar free chewing gum. It seems to generate saliva for soem reason. And of course drink water but you'll not have to drink that much you are going for a *** every 10 minutes if you use the products above. 

Above all, don't panic, 16 days post treatment you wouldnt expect any improvement in dry mouth, as any improvements can take up to 2 years to appear. The sugar free gum I've only just discovered (don't know why the medics never told me about it) and is a bit of a game changer.

Hi Peter 

it really is early days for you yes I am noticing small improvements in saliva . I use sugar free gun look fir the ones with xylitol as first ingredient as opposed to sorbitol as I find it kinder to mouth . Holland n Barrett do one. I use bio xtra  dry mouth wash  and have no problems as mouthwash but wecare all different. I have  check ups every 3 month at dentist . Keep sipping water 2 years is the magic number when we reach that what we gave us what we’ve got unlikely to get much better but there are always exceptions. When u can eat a bit better than his water based food like cucumber and celery cut into strips help. Keep off all tea  snd coffee as they dry. Also use duraphat toothpaste every time you try to eat as well plus if u can stand them the interdental brushes as lack of saliva causes food to stick in teeth 

I have a blog with more tips 

www.radioactiveraz.wordpress.com

Keep in touch

Hazel 

Hazel , many thanks for the invaluable advice . I will definitely be reading your blog .

Peter

Thanks for some great advice .

Peter 

Hi Peter no problem any questions please  ask either me or someone will get back to yiu

good luck 

hazel

Hi,

I am on this thread as my Father-in-Law has just been diagnosed with tonsil cancer and has asked me to find out all I can for him.

But your post has jumped out at me as I was widowed at 46 (my husband was 48), and my absolute lifeline has been WAY Widowed and Young. It's an amazing organisation, offering peer support to those widowed under the age of 50.

I can not tell how much it has changed my life, finding people who just 'get it'. There are people widowed through every cause you can imagine, so there is always someone who can say, "YES! Me too."

I would urge you to make contact and, if you feel ready, to join.

With very kindest regards x

Hi this is Hazel  I am  11month post radiotherapy for tonsil cancer with all clear given in January. Mine was h p v 16 + positive and numbers were T2N2NM I have a blog detailing my experience 

www.radioactiveraz.wordpress.com

pop by give it a read. With it being a blog the most recent post is first so scroll down to see the start. There are also links to other sites 

hope this helps any questions just ask 

hazel

HI Raz, 

I must have been in treatment whilst you were, in the same Hospital and from the same area (I’m from Barnsley but live in Huddersfield).

I finished treatment end of Nov 18. Dry mouth persists but that xytol (or whatever it’s called) sugar free gum seems to help. Just be careful with Bioextra products as lengthy use can strip the enamel from your teeth. Get the Colgate mouthwash prescribed instead.

Still having trouble with quite a lot of food but slow cooker is great. Braised beef mash & veg is my favourite. 

Sometimes have an afternoon nap, but then again I did before getting cancer as I’m my own boss and can do what I like!

Things slowly improving, hoping they are better 2 years post end of treatment but got a year and  4 months to wait for that.

Mark x

Hi mark 

my treatment finished the 31 August I saw oncologist  twice in uni September then once October once December pet ct scan  4 jan result s day 14 January. I am under ent and back in January as oncologist wants to see me every January for next 5 years .last Saturday I did a sponsored bike ride for head and neck division raised £1200 do well pleased rode 60 km in pouring rain 

 .yes I agree slow cooked food is the way to go I like no it to food my mum used to cook plain and simple casseroles is the way to go. Ok the mouthwash I have tried the Colgate prescription one too harsh for my mouth I see dentist every 3 months and Shen gives me a good check up will mention the enamel.my gu,s have receded due to radiotherapy and the dentine atbthe bottom is showing but told all ok so far. 

I worked in barnsley for 21 years now live on birder south York’s west yorks nearer to pontefefract .small world. 

I had acupuncture on Wednesday trying to kicknsaliva glands into action also still use xylitol gum water and half an xymelts at night.

good luck keep in touch H would ask who your dr was but we can’t name names on here

h 

Hi mark 

my treatment finished the 31 August I saw oncologist  twice in uni September then once October once December pet ct scan  4 jan result s day 14 January. I am under ent and back in January as oncologist wants to see me every January for next 5 years .last Saturday I did a sponsored bike ride for head and neck division raised £1200 do well pleased rode 60 km in pouring rain 

 .yes I agree slow cooked food is the way to go I like no it to food my mum used to cook plain and simple casseroles is the way to go. Ok the mouthwash I have tried the Colgate prescription one too harsh for my mouth I see dentist every 3 months and Shen gives me a good check up will mention the enamel.my gu,s have receded due to radiotherapy and the dentine atbthe bottom is showing but told all ok so far. 

I worked in barnsley for 21 years now live on birder south York’s west yorks nearer to pontefefract .small world. 

I had acupuncture on Wednesday trying to kicknsaliva glands into action also still use xylitol gum water and half an xymelts at night.

good luck keep in touch H would ask who your dr was but we can’t name names on here

h 

Hi Raz,

Thanks for the update.

Good tip on the xylitol melts. I hadn’t heard of them but just ordered some. Thanks!

Well done with the charity activities, that’s great! I wish I had time to do something but at the moment I run my own business and it’s full on, maybe in future I can raise some money. I got the 100% all clear a couple of months ago and told it’s a cancer that doesn’t return. 

Be good if side effects are minimal after the two years. I can stand that, just hope it’s not going to be like this forever!

Mark x

Hi Mark 

no problem I just pop half of one in wheen I wake up in night but at start of dry mouth I used one when I went to bed then half way through night.i get hubbybto use his finger   nails using both thumb nails on the brown side of the tablet. Took us ages to work out how to break them even used a Dremel cutting tool ! Once .if u didnt get them from the mouth ulcer company try them next time I founded them to  be the cheapest. I took to  straight  away un can't choke in them they dissolve e and are full of if xylitol so don’t do any damage to teeth. 

Yep I am a year next month and would like a little more saliva please !!!!will let u know how acupuncture goes has one session so far and don’t seem as dry but who knows. 

Admire you for working Glad we’ve retired. 

Let me know how you get on with xymelts 

Hazel xx

Hi All,

So reluctantly i have recently joined this exclusive club. I have tonsil cancer plus lymphs on both sides. 30 days radio plus two chemo to start Monday. You all sound so brave and positive but i have to say i am terrified of the cancer and the treatment. I was given my full diagnosis and treatment plan 3 weeks ago and was so shocked didnt ask any questions. Since then nurses are available but its been difficult to get hold of my consultant or his team (think they are all on holiday!) so this forum has been fantastic for me. Got some questions if you can help, i know you cant give advice but experience would be appreciated. 

Originally i thought i was getting surgery before radiochemo but then surgery ruled out, still have no idea why or if its a good/bad thing.

Did anyone here have it in lymphs on both sides, i still don’t know if that is much worse than only one side. My right tonsil is small (T1) but the lymphs are scaring the hell out of me. The right one seems to be changing over last week, it was just a hard lump but now soft sensitive swelling developing all around it. Rang the nurse but he said probably nothing. 

Do the lymphs start to shrink during the treatment, think that would give me a big lift.

Has anyone been fairly successful managing pain. I am expecting pain, but the thought of constant high pain for weeks on end is panicking me. Did anyone try fentanyl patches, or any other pain control that worked well. 

Sorry for rambling.... appreciate all your help.

Shaun

Hi Shaun, Don't worry about the lymphs, they just zap them out with raidiotherapy. You've got in the region of 600 in your body so you won't miss a few They are there to fight off infection mainly so losing a tiny amount out of hundreds won't affect you.

Also, you've got the diagnosis and you are already in the treatment plan, they'll do everything in the quickest time possible. My first day of treatment (1st lot of 2 chemos and 1st of 35 radios) was a full month after going to hospital and being seen by Oncologist but times can vary according to everyone's personal needs.

I didn't have surgery either (apart from biopsy) left tonsils in and nuked them.

Also T1 (Stage 1) is the best dignosis you can get but they successfully treat Stage 4 tonsil cancers (the hmost advanced ranking). if you have been given an N number that will be the number of lymph nodes thay will be targetting with the radiotherapy.

Pain management will be fine. Oral Morphine, Fentanyl patches and Cocodamol/parcetamol or some combination will be given to you to ensure no pain. I even drank booze through my treatment and was fine (T2 diagnosis) can't remember how many lymph nodes but a few anyway. 

Hopefully you will test positive for HPV virus when they do biopsy as this also helps. Seems a bit odd carrying a virus helps, don't know why, but it does apparently. It is in a lot of people and doesnt cause problems in most but can cause certain and different cancers in men and women. i was HPV positive which my Oncologist said was good, but even if you're not, you still have one of the cancers with the highest cure rates when detected early like yours has. 

My stage 2 tonsil cancer (with HPV+) was given at 94%, ask your oncologist for the full diagnosis and % cure rate if you want. I took a freind with breast cancer to hospital for chemo on Thursday and she hadnt asked. I said ask him if you want, so she did and he said 92%/93% cure rate. I said I was always 1 or 2 percent better than you anyway! Got to keep a sense of perspective; my other friend who went through treatment at same time as me for tonsil cancer was cured of it, but it was a secondary cancer and they couldn't find the primary. After endless scans they did find the primary in her liver and it was palliative care only. Her funeral was yesterday. That's me & two friends with cancer in the last year. My wife had bi-polar and took her own life 4 days into my treatment last October, hence drinking alcohol as well as pain meds, i was a right mess as I loved her for the 18 years we were married, and cancer on top of the grief. i'm still standing though and getting better week by week, when in truth when having my treatment i didn't care whether I lived or died, my grief was so overwhelming, so I didn't even have a "can-do" attitude but still here I am ....... maybe not giving a monkeys about my survival helped me who knows.

Anyway hope some of this helps, you'll be fine, it's not a walk in the park, as no cancer is, but I'm doing ok now and less than a year ago I was happily married and had no cancer, it shall be sorted!

Hi Shaun

can only echo what Hillts911 says I am at the end of this month 1 year post radiotherapy for tonsil cancer rights side diagnosis was T2N2Nm at s an just prior to treatment starting had gone to n3/4 but I got all clear in January.to be honest week 4 my big lymph node who we called Larry had disappeared melted away .

Welcome to the club no one really wants to join 

one reason why neck  dissections aren’t always done first is  in the rare case odd radiotherapy n chemotherapy nit totally clearing everyth8ngbtheres always the back up of surgery so don’t worry. Plus T1 is a good prognosis  do you known if you are h p v + as that can have a bearing in your treatment .

i have a blog detailing my experiences thing to remember we are all different in How we react so use everything as a guideline not written in stone.

if you want to send me a friend request please do so

my blog is www.radioactiveraz.wordpress.com  with links to others on it .

i had 35 radiotherapy sessions and 2 chemo ,have completed a 60 km bike ride the other week for charity and just eaten a cheese and ham toasted panini so am proof that there is light at the end of the tunnel ok with a few bends in the way .

i stillhave dry mouth and some fatigue but they do say it’s can yake 2/3 year soon to know what the final outcome will be  I can look back to last August and was 3 weeks into treatment so look at it as a big plus .

good luck for Monday inve treatmnet starts yiu get into a routine ask away any questiosn 

Hazel

Hi Hilts, I am so sorry for your loss, it must have been unbearable. Yet you are still here and have taken the time to reply, so thank you with all my heart.

I think my staging is T1N2cM0 and I’m P16+ve. I’ll be honest my consultant didn’t seem that positive. I got “this will be tough, but you have better than 50% chance”. I was so shocked i didnt ask anything and he just went on holiday and that was that! Should see him next week though.

Sorry Hazel, was writing reply above as yours came in. Again thank you so much for taking time to reply. Yes l’ve seen your blog and getting through 35 days of treatment sounds heroic! It’s comforting that you also had lymph changes while waiting for treatment to start, you always think it’s just you that’s ‘special’ and have some rare aggressive cancer!

Shaun

Hi Shaun

thank you it just had to be done to start with  I was in same frame of mind as you but my oncologist just radiated confidence from the first handshake in his word I am looking at cure not just treatment and my name is Dr .... can’t mention names in here. 

DOnt google any statistics like my consultant quotes iif he went online he could diagnose himself dead within mins . The onky figures you need look on here see how many I’d us have made it through treatment and are now cancer free , with us being h p v 16+ It’s highly unlikely to return ok we can still get cancer just like anyone else but do they treatment put up with the fact it’s horrible but if I can do it a wimp who cries when she breaks a fingernail you can do it.  Ok you will feel tired and sometimes days pretty crap but you will get through it 

hazel

Hi Hazel, the consultant meeting is just a blur to me so i may have misheard what he said. Seeing so many people in this group get through has been my greatest inspiration. And yes a broken nail is a big deal :-)

Take care

Shaun

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