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, 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 

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

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