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Tonsil cancer treatment

18 Dec 2020 11:53

Hi to everyone on here,   I wanted to share a bit of my story and see if anyone else has been through the same and come through the other side good or bad! Would be nice to hear some realistic expectations and outcomes from people that have had treatment.  I'm due to start radio chemo in January for tonsil cancer. I have a feeding tube to be fitted in a couple weeks which I'm pretty nervous about but going for it anyway, whatever they can offer is my thinking. I was offered a trial but now they're saying it's only spread to 1 lymph instead of a couple so no trial can be offered, not sure if this is good news or not feels like It should be but I'm not convinced. That being said I've been through loads of stages of paranoia since I found out, and I'm now just trying to let what comes at me just happen and breath. There are so many stories on google (I realise now I should not have looked but it's too late) Should I be getting my affairs in order just incase, will I have time to do that if things don't work. Am under or over reacting, these are just a couple of things that go through my brain daily, that I can't discuss with the family. Any thoughts or ideas and experiences will be welcomed.

Tonsil cancer treatment

19 Dec 2020 05:05 in response to Inthesticks

Omg ! Nope no need to get your affairs in order just yet . 
 

I was in this very position this time last Christmas but with base of tongue cancer . My cancer was Stage 4 ( although throat cancer isn't staged as in staged ! ) so a big Tumor that had also spread to my lymph both sides  . Started 6 weeks daily radiotherapy of the very highest! But no chemo due to covid . Not going to lie treatment is brutal BUT these cancers of the throat and mouth have a very  good outcome . I also had a feeding tube and it was a life saver . I have had 3 clear scans . 
I also met a young man who had tonsil and he is also clear . 
happy to help if you have more questions. Ginny x 

Tonsil cancer treatment

19 Dec 2020 10:20 in response to Ginpo

Nice to meet you Ginny, it's nice to hear a positive outcome, I'm glad your on the mend.  I had the mask fitted this week and two teeth removed at the back, I think it all started to hit home this isn't going to be a walk in the park. But I am feeling positive, all the better for hearing your positive outcome inspite of COVID.

Tonsil cancer treatment

19 Dec 2020 13:34 in response to Inthesticks

Oh the dreaded mask .... but it will become your friend. It's just to keep you still & I actually didn't mind it . One little tip do not put any creams or lotions on before your treatment just think greased chicken going into the oven ! ( I learnt my lesson ) but as soon as you come home slap it on , you will be given cream I suspect as was the case with me . You neck will get very sore over the 6 weeks . I'm sure you will find all the radiotherapy team lovely . The time goes really quickly once you are in the table apart from the day of the week you are scanned that takes a little longer . But as in my case all done by the same machine . Be positive you will be ok awful as it is and will be for weeks afterwards you will be fine . Try and enjoy Christmas and eat as much as you can  I can almost guarantee you will lose weight a lot ! 
Be positive . Ginny x x x

Tonsil cancer treatment

9 Jan 2021 15:06 in response to Inthesticks

Hi there,

I have been on the journey for thoat cancer and like so many, had succesful treatment, recovery and all clear.

It;s been couple years now and I lead a normal healthly life and can eat what I want, do what I want and have no real lasting side effects that have reamained.

The success rate for throat cancer nowadays is really high and although its a challenging journey, you do come out the other end and the light at the end of the tunnel is there.

I kept a blog which has helped many people and I have posted a link for you to have a look at.
Outlines pretty much weekly journey and also plenty genuine tips that help along the way and although we are all different, the main challenges are pretty much the same and its just the recovery and side effects that can differ in timeframes for easing off

I found this forum really helpful and I started a thread called "Radiotherapy for Throat Cancer"...it is couple years old now but its under Living with Cancer and has over 1000 posts with many in same poistion sharing tips and support and perhaps worth a read. (Anchor 1707 was my thread name)

Please stay off Google as there is so much mis information and can also be out of date.

Stick to here/mcMillan/official NHS. 

Plenty of support and help here for you and my details are on my blog id you want to get in touch as happy to help.

Like Ginpo says..no need to be getting your affairs in order and stay positive and remember the light at the end of he tunnel.

https://radiotherapythroat.home.blog

Kind regards
Ian

 

 

 

 

 

 

Tonsil cancer treatment

9 Jan 2021 15:12 in response to Ginpo

Hi Ginpo

I havnt been on here for a while but I remember you from the thread.

I hope I find you well and I share your positive outlook.

Happy new year to you and my very best wishes to you.

 

Kind regards
Ian

Tonsil cancer treatment

9 Jan 2021 18:13 in response to Anchor1707

Hi Ian great to hear you're healthy and had a good recovery. I've just come home for the weekend from my first bout of chemo/radio, feeling rougher than I expected to to be honest. Terrible acid reflux kept me up all night, even water tasted awful and can't seem to keep off the loo. I thought I'd have a couple more weeks for these side affects to kick in, now I'm worried about how much worse it can get over six weeks. I hope I have the strength in body and mind to do this. I'll read your thread while I'm hospital next week. Thanks again for your reply it means a lot. 
Natalie

Tonsil cancer treatment

9 Jan 2021 18:39 in response to Inthesticks

Hi Natalie,

Stay positive my friend and you will get through it.

Amazing what the mind and body can cope with and although you will have some challenges to face, remember the light at the end of the tunnel

Happy to help anyway I can and click on the link to my blog to have a read when you get a chance as hope will help put some things into persepctive.
keep me posted on progress.

Take care and best wishes
Ian

Tonsil cancer treatment

13 Jan 2021 18:41 in response to Anchor1707

thank you for this thread folks very useful/ I am undergoing tonsil mass tests at the moment and have my op next friday for panenscopy and biopsy so no where as far down the line as any of you but it is useful reading the comments and hearing what the possible treatments will be. It is reassuirng to read so many good outcomes after the hard journey ahead. Thank you, good luck and hope to all. 

Tonsil cancer treatment

13 Jan 2021 19:47 in response to Elona

Hey Elona

If this does turn out to be sinister for you as brutal as the treatment is it does have a very good outcome . Try and stay positive until you know for sure what's going on for now . 
mall the very best . Ginny x x 

Tonsil cancer treatment

14 Jan 2021 21:21 in response to Ginpo

thank you Ginny, todays aspiration was painful didnt realise no local anaesthetic but done and ultrasound of neck lump possitive suggestive of reactive lyhmphoid probably related to tonsil biopsy now booked for a weeks time.