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.

Thanks for posting my husband has had the same diagnosis and is about to start treatment in a couple of weeks. Feeling pretty apprehensive about it all so any information is really helpful. 

Hi Herbie

So sorry to hear about your husband , is he having chemo and radiotherapy ? Treatmant itself is quite painless , it's the side effects of the radiotherapy that are pretty harsh , I finished my treatment on the 16th August this year and still have side effects but if it's a choice of those or living I choose side effects , I do have down days , the best person to talk to it Hazel ( radioactiveraz ) she is so lovely and a year ahead of me , she is full of great advice and tips on how to deal with things , and cheers me up when I'm having a s++t day .  She also has a blog  from the start of her treatment it's worth a read , Keep in touch and add me as a friend if u just want a chat , hope all goes well and as I said keep in touch xxxx

Thanks so much.  He’s got 6 weeks of radio with chemo once a week. Team at hospital are lovely but although he’s pretty brave about the whole thing he had a bit of a panic when they were measuring the mask as he thought too much about the fact it was pressing on his face. I’m trying to teach him mindfulness which is ironic as he has always been really sceptical about all that. I’m also a bit worried about the journey. Hospital is quite a long bus ride away. At moment I’ve said I will pick him up on chemo days but I’m thinking I will have to take maybe ten last 2 weeks off work. I’m trying to keep it to a minimum as I *** think they will pay me. Any tips re the mask would be great

Bless him , the mask can seem daunting , but honestly it's not as bad as you think , and you are only in it for roughly ten min that's all it takes , I think it's one of those things u just get used to , as for getting to hospital , I was 2.5 hours away , at first was gonna stay in hospital accommodation but only lasted 2 days got homesick , but found out if u have cancer you can get transport to and from hospital , I just asked my gp , they gave me number , and u just book the times u want , on radiotherapy days they would just wait for me , I know my husband wouldn't be able to take that much time off work , and first few weeks I suffered sickness from chemo so not nice being on public transport xxxx

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

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

Thanks Peter - He will be fine with the mask after a while - basically he has to be!  The nurses are lovely though and have said they will find some music for him  Trying to get him into mindfullness although I know it's not for everyone  

So glad I found this chat- it;s so reassuring  He had a PET the other day whcih shows it hasn't got any bigger and hasn't spread thankfully so fingers and everything else crossed.

Thanks for all your help- I'm sure I will have lots of questions

So gald things are back on track for you 

x

Hi. I am sure your husband will cope with it all and come out the other side fine. I'm 13 months post treatment and only remaining side effects are some foods still to dry/chewy to swallow and dry mouth continues. Apart from that 100% clear and basically told it won't come back. 

I actually enjoyed the mask fitting, it's nothing to be scared of. Side effects from about halfway through treatment to a few months after are difficult but as time goes by things get easier. I had 2 x Chemo and 35 x radiotherapy. Recovery period is 2 years after end of treatment and progress is fustratingly slow. I still have 11 months to get "as good as I'll be for the rest of my life" in twerms of swallowing and dry mouth. No-one will be 100% but some people are less affected than others.

The way I look at it is that if I had to live my life in the condition I am now I'd be okay. Yes I'd need sugar free gum and water for dry mouth and there would be certain foods out of bounds, but in the scheme of things they are manageable. Any iprovements from here I'l see as a bonus. I've a feeling my swallowing will have some more improvement in it as it has been gradual ongoing progress. Dry mouth I think I'll still be affected by at the end of the 2 years, but that's just my guess. 

Overall, if you are going to get cancer, it's not a pleasant one to go through, but the cure rate is huge, so it's one I'd take over a "lucky dip" of other types of cancer. I guess we all know people dignosed with incurable cancer.so I class ourselves as the lucky ones, that can recover and have a near to normal life after it. If your husband approaches it with that positive mindset it will do him good. There's nothing really to be scared off, it's just the side effects from the radiotherapy are s**t for a few months. But the main thing is that you end up on the right side of the turf!

Good luck with it all, as it seems massive at the time, but after a year I can now look back and see it as just an incovenient illness I had to get over. The bad memories of the side effects fade over time and your husband will think less and less about it as time passes, until it's just a distant illness in the past that he took on and got through it. Again we're lucky that it's not a major life changing illness. Normality will return to your life as well, as I think my family and close friends were more scared about it than I was. Maybe re-assuring all the people close to you that he'll get through it will be a good thing for you to do for your husband. Putting their minds at rest is important I believe.

Hi hope everyone is well.

Husband is 2 weeks in now and doing pretty well.  Up until today he was eating and drinking pretty normally but the inside of the front of his mouth under his teeth has suddenly become very sore.  Whilst we were expecting this it's not in the area we were expecting as it's nowhere near where the radiotherapy is hitting.  He says it's worse than his throat.  

We were wondering if it's something to do with the toothpaste???  Did anyone else experience this amd were there any particular toothpaste bands that seemed better than others.

Thanks 

He was always going to be a strange one!!

Hope all went well on the 6th Hazel x

Hi glad he is getting on well with treatment , have they given him prescription toothpaste ? They gave me Colgate duraphat toothpaste , but also think it can affect anywhere in the mouth, at one point my whole tongue was nearly white , was covered in ulcers , best thing I found was gargling and rinsing mouth with salt warm water , also dispersable aspirin , as that kills pain.  Don't know if any of that is helpful , but worth a try , the side effects are not nice, I can still barely eat , only couple things I can actually swallow , and I finished treatment middle August , but every one is different , hope that has helped , and tell him good luck

maria

Thanks yes I will ask about the toothpaste.- 

The dispersable asprin is a good idea too - that could will relieve the pain.

Thanks so much.  I hope the eating improves for you soon xx

Hi , yea I hope so too fancy so many things lol but most are a no go , yea the aspirin thing I was told by a pharmacist that I work with to try them , and they do work , anything is worth a try xxx

good luck 

Maria xxx

Hi yes meeti g with oncologist went well , he want to see me every year up until 5 year mark .i am a bit of a project for him m a female with what is predominantly a male cancer ,only  % of females get tonsil cancer h p v 16+  so he say  he says I am special .i see local ent every 3 months now uo to 3 year mark  then every 6 month.

I was also given Colgate duraphat toothpaste which I have to use forever now, it’s on prescription and fluoride based.ordinary toothpaste no use , plus he will need the softest toothbrush yiu can get , mine weee from amazon called curaprox 5400 bristles .also like Maria says mouthwash with dissolvable aspirins . Warm salt washes and if he can stand it baking powder  as well keep,away from any shop bought  mouth washes as they have alcohol in them even the zero alchol ones unless you get  prescription ones.

mouth  ulcers can and do appear overnight hubby will start to get to nitty gritty part soon any questions just ask

Hazel,x

Thanks Hazel   So glad it went well.  I'd agree you are definatley special!

He's going to ask about the toothpaste on Monday..  I think someone mentioned it but he never actually got a prescription 

Nitty gritty is clearly on the way

Thanks so much for the advice everyone it really helps to talk to people that have actually done it.!!

So that's it last chemo was Wed's and last radio was Friday.  They said this week would be the worst but I didnt realise it would hit him so hard   He's done so well up to now ironic that he is this bad now the treatment has stopped.  Just wondered how others coped during this week.  He can barely get out of bed !

Hope everyone is doing well.  Dispersable Asprin are now trending at the Oncology dept - everyone's on them !

Jane x