Recently Diagnosed

Hi Lyle I am Hazel aka  RadioactiveRaz I am just over 2 month soon post radiotherapy for tonsil cancer with several affected lymph nodes.I can’t lie the treatment is pretty brutal but I’d i can do it anyone can I am a self confessed wimp. I didn’t have surgery as in early lymph node was too close to my spine for surgery. I had 35 radiotherapy sessions and 2 10 hour chemotherapy sessions I have a blog details below and links to others sites. Don’t be scared if the mask , the actual making if it or the wearing  of it look upon it as something that’s  going to help save your life .Best advise stay off dr google yiu will inky scare yourself you've done the  hard part going and getting help. Stay on here we are a friendly bunch ask any questions someone will always try to help Hazel 

Hi Lyle.  You are in the right place for support. Think my hubby’s was a bit different to yours - his was to SIL cancer which had affected 2 lymph nodes and his soft palate.  Easier said than done, but try not to worry too much - see what your team say and let us know.  One invaluable tip we got from here was to get a notepad and write down all of your questions.  Write the answers down when they are given to you as you are told so much you will walk out of the  room and forget some if it.  Stay off Google and ask questions on here, you are not alone xx

Good evening Lylo, welcome to the head and neck group, so sorry to here of your problems and trying to deal with it yourself . It would be better to re-post once you get your results next week  so we can give better advice, personally i dont think the treatment is as bad as your read online,i.e Google. I had surgery,radio and chemotherapy and to be honest i did not really suffer that badly and found the mask ok when i had radiotherapy. We all react differently during recovery but as Hazel said "if she can do it anyone can" ,like many of us on here. If you prefer you can send private messages (a bit like facebook) all you do is click on the senders name and an option will come up for a friends request . Please do not feel to frightened or alone as you will be in good hands with experienced consultants and their team, so please re-post once you get your results or if you just want someone to chat to. Wishing you well during this difficult period ,take care.

                                                                                               Chris x

Mask was not a problem for me. Actual radiation therapy takes only about 2 minutes after set up.

Hi Lylo. Welcome to the community. I know it's not a place you'd want to be but now you've found us there is lots of help to hand. You can post here or private message any of us for help and advice, a shoulder to cry on or an ear to scream at. Your team will discuss all the things that follow with you and you won't be kept in the dark over much, if anything. I know in these times it's difficult to have somebody with you nut I think you can at least insist on that for your first appointment. It's easy to not hear and forget things one the word cancer is mentioned. The radiotherapy itself doesn't hurt and each session should take only ten minutes or so. It's hugely important that you stay still and in the same place so this is why these masks are used.

As for what happens next.

There will be a visit to the dentist at the hospital to check your teeth as some will be in the treatment beam.

There will be a planning session when you'll have a CT and the mask will be made. It's nothing to be frightened of. 

There is a lot of information on the Macmillan site and you could start here. This is a link to radiation masks. Radiotherapy Mask

Come back and ask questions as problems arise. There are lots of us here who have survived and thrived and somebody will have an answer or a work round.

Best of luck 

Hi Lylo

Please don't feel you're alone through this worrying time.  

You've made a good start with joining the forum here.  We've all had similar treatments so there is a wealth of experience and support available to you.  

The treatment sounds frightening but there are so many of us that have been through it and come out the other side.  And do remember that we all react slightly differently to the treatment as Chris said so a side effect that was terrible for one person may not be as bad for someone else.

Good luck with your results next week.  Do let us know how it goes.

Linda x

Hello Lylo

Exactly the same. Lump suddenly appeared in neck so had it checked and was squamous cell carcinoma with 2 lymphs affected.  I had surgery, radio and chemo but, that was what was recommended by my team. I still had a choice though. Do write things down as it is overwhelming and ask if you can have a member of your family with you. I am slightly claustrophobic and the mask thing scared the heck out of me but, in reality, it isn't a problem. It took longer to change into a gown than it did to have the treatment which was only 3 minutes and the team will talk to you and play music to reassure you. Once your team has all the scan results, they will come up with a plan and you might just find it easier to deal with once you know exactly what will happen, I did.

Wishing you all the best.

Tricia

Hi,

Glad to see that you have come here for support.  We do try to help each other as best as we can.

We all understand how you are feeling.  There are a range of options. In my case we just stopped at surgery and have kept radiotherapy and chemo as an option for later on, but I am somewhat unusual.

The important thing is to be clear with yourself what you want to happen and what is realistic as to outcomes.  Your clinical team will guide you, but you should take control . It will feel so much better if you do rather than letting the cancer and others dictate.

I am so sorry that your family have found it difficult to accept where you find yourself.  Personally I think it is harder on family and friends than the patient in may cases.  they feel out of control...

Feel free to vent your frustrations to us, and Good luck going forwards.

I am not sure why you find the mask something to worry about. It is tight fitting but not that tight. I do advise you to always have pain killers with you and not rely on the hospital providing them. With me they first had to find a doctor to ask him for permission so I learnt my lesson. The radiotherapy seems to be a matter of luck, some come out unscathed and others like me dont. It may be a matter to worry about but the mask certainly isnt. I have written elsewhere that there ought to be a clock that you can see while you have it, but for some reason they dont have it. About your teeth I advise you to ask your own dentist if they really have to come out. They took all mine out and I dont think it was really necessary. But the lady who did it really did it well. I wish you well and there is no real reason to be 'petrified'.

seeker1 said:

About your teeth I advise you to ask your own dentist if they really have to come out. They took all mine out and I dont think it was really necessary.

I absolutely agree on this. Get a second opinion if they want to take molars out. I was prepared to fight for my teeth but in the end the hospital didn't suggest any extractions