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 this is Hazel I am 16 month post radiotherapy for tonsil cancer the treatment is brutal no point saying otherwise the recovery can be long the end result is usually excellent so keep that in mind. The mask and radiotherapy tell hubby to treat it like a friend it’s going to save his life I used to say good morning to mine I gave it a name and I told it that the next 12 min she we’re going to hurt it more than me but that was ok as it was doing a good job. Might be Mumbai jumbo but try anything the radiotherapy transnational are shrillness , I took my own cds in tomokay , plus let my mind wander in bikes rides , walks anything to distract. I have a blog with lots of hint and tips about my experiences wwww.radioactiveraz.wordpress.com

re transport donthe hospital offer patient transport ? some days a bus journey may be too much m is there anyone who could  drive you there ? You really need all the help you can get, remember where the treatment is our mouth really affects every facet of life , eating sleeping , drinking breathing  we are all different and hopefully he won’t feel rough all the time ,the first 3 weeks are not too bad but then it can really hit hime  don’t mean to scare you but no use saying it’s a walk in the park  it’s doable but not easy  is your hubby h p v positive do you know and what turnout size is was T2N2NM with affected lymph nodes 

keep in touch send me a friend request if u want to chat  privately Hazel x 

Morning Hazel , I knew you would come through for this lady bless you , hope your ok xxxx

Hi Maria yes am ok justbiff with grandson to York seeing friends will message you later. But Yeo had fruit tea cake toasted thus morning really enjoyed it not often I say that but it was yumnyb h xx

Oooh lovely are you near York , I love it there, that's good glad u enjoyed it , I had my ready brek yesterday , first thing I e eaten , def had a bug last week felt bloody awful , but I enjoyed that was lovely , also just quick question do u have trouble with nails I had both my big toe nails fall off , then yesterday took nail varnish off and my thumb nail had gone green ???? Have lovely day talk later xxxx

Hi there Herbie3

Just thought Id pop by to say hi and so sorry your hubby has had this diagnosis.I see Hazel has been in touch tooand her blog is great. My hubby was diagnosed with stage 3 tonsil cancer in December 2015 and had 5 cycles of Cistplatin chemotherapy, 30 sessions of radiotherapy and a neck dissection. It was definitely daunting going into the treatment and I wont lie it was really tough for him and me as his carer to have to wat h him go through it. However here we are 3 years in remission- cancer free and living life to the full. 
Were all here to give you support and answer any questions you have if we can and I have to say I wish Id found this group when we we're going through it as I didnt feeI had anyone to talk to. 
Keep in touch and remember you're not alone were here to help.

best wishes 

Emma
 

Hi Herbie3

Sorry to read your husband is about to begin this tough journey . Some people do not cope too well with the mask ,but if he can focus purely on the fact that it's a crucial item that is helping to kill the bad stuff then that helps , I finished my 6 weeks radiotherapy and 2 chemo rounds at the end of June 2019 . You do not feel anything during the radiotherapy . The side effects are tough from both treatments .For me and most people the worst period was immediately after treatment , I lost minimal weight during treatment but almost 2 stone after . It is vital for your husband to try and keep his weight up especially during the treatment period as dramatic weight loss can result in a new mask being made . The first 2 and a half months after treatment were really tough mentally and physically and I couldn't see an end to it then BUT then suddenly day by day the side effects started to lesson . From my first day of treatment to first day back at work was 5 mths 3weeks , I was expected to go back to work in January so  was really pleased to smash that date , it was a phased return to work initially . What you and your husband must focus on is this cancer has a massive cure rate and the chances of it returning are negligible my consultant said if you are going to get a cancer this is a good one to get because you will be cured . I was given my diagnosis by a blood Consultant  who told me none of the positives so for 3 days I thought I was going to die , then I saw my Specialist Consultant who looked inside my mouth with a torch for maybe 5 seconds then said " we can sort this , 6 weeks treatment job done " a huge statement to make but everything he said would happen has and I got the all clear on the 2nd of October . So it will be tough , very tough as all the wonderful people on this forum can testify   BUT keep pushing and it will be worth it . If you want any advice or more details on my experiences this year then add me as a friend , pm me , if I can help with any information just let me know .

all the best to the both of you 

peter

Please forgive me if you have already had this message.  I though I had replied but then it disapeared  Think I preseed the wrong button!

Thanks for the info about the transport that's so helpful xx

Hi Herbie

no problem bless u sure you have other things on your mind , your more than welcome.but for me it was the best thing ever , because you and your family can sort of carry on a normal ish life , because you still need to live my husband self employed and we couldn't afford him to take loads time off , so it was perfect for us 

maria , keep in touch see hazel gave u some advice she is brilliant she should be a counciler because she has so much knowledge , she's kept me going a few times , so worth listening to , but any help or even if it's just a chat   , we are always here so don't feel alone xxxxx

Hi Hazel and thanks.  We will def give it a name although he has already given it a few choice ones!

He is T3 (but only just apparently almost a 2) N2 (but one is very small) and thankfully no M's as yet. Still waiting to hear if it's viral or not as I understand that makes a difference to how easy it is ti treat 

I'll def be having a read of your blog but from the picture it looks like you are doing fine.

This chat has been so helpful - we will ask about the transport

Take care

Thanks thta's so great to hear - so glad it's all going well

So glad I found this chat has been really reassuring xx

Thanks thta's so great to hear - so glad it's all going well

So glad I found this chat has been really reassuring xx