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 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

Hi nm  is no metastatic ie spread to other organs so we deffo don’t want that , T3N2 isn’t a million mikes different from mine , yespmthe h p v status does help,as the rumour responds well to treatment m saying that I know plenty of others who have successfully gone through treatment  ithoutbthe h p v status .and like me come out the other side. 

This time next year yiu will look back at this time and Ben well in the waybtonrexover ,positive mental attitude is what’s needed along with anything else yiu can throw at it ! 

Radiotherapy doesn’t hurt it’s just the side effects but we are so lucky having a brill N H S and at cancer level they aren’t spot in , where’s in U.K. are your? 

Hazel, please keep in touch 

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

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