Hi Ian

i am 7 weeks post radiotherapy hang

In there it’s a tough road I did 35 radiotherapy sessions 2 chemotherapy.

i have also done a blog www.radioactiveraz.wordpress.com takes u from diagnosis to present day.newlymarried on here is good if u have any questions just shout out. Mine was HPV 16 + cancer of right  tonsil and lymph nodes 

hazel aka RadioactiveRaz 

good luck 

Hi hazel I see this was 2018 I was wondering how you got on and could tell me the treatment you went through , I have just been diagnosed with tonsil cancer and going for my first CT scan tomorrow any info would be gratefully accepted.

Hi Matt,

Well done for getting this far. The 2 weeks either side of the end of my treatment were my worst so hopefully you are over the worst. Ian just beat me to it! I was going to suggest you read his blog.

From reading historical posts on this thread, it is fair to say that everyone is different. I feel lucky as, as well as reading stories of others, the consultant and dietitian have told me that my progress has been ahead of the curve. 
I am 10 weeks post treatment and have been in Czech for a month (Czech wife). We have done a few 50km bike rides and a lot of walks and I'm feeling much better. I have to drink constantly and investing in a hydration backpack is the best thing I have done!

I'm eating sensibly. I can eat most things but foods with a lot of sauce are ideal. My saliva is coming back but still a way to go and my taste buds are still off.

Will send you a msg with some more detail.

Robert

Hi. Chrissy oh dear sorry to hear re dilation. As for thyroid check if you have a cancer nurse give her a call sm sure she can arrange  one I know mine can. It can't hurt to ask for refferal know Vin Paleri is doing amazing surgery. 
please kerp in touch 

Hugs Hazel xx

Hi Matt well done on completing treatment it's still early days for you we are all different my blog might help you. 
www.Radioactiveraz.wordpress.com

I'm almost 4years post radiotherapy for tonsil cancer with several affected lymph nodes 

Hazel 

Oh yes. We watched a prog "Super surgeons". He was on it. 
I must get on his consultants case!!!! 

thank you 

Chrissy xx
 

Hi Chrissy excellent programme shows what they can do to help us. 
yes please do. 
Hazelxc

Hi,

My mam completed treatment for tonsil cancer hpv pos in June 2019 and got all clear in September 2019. She has been doing so well but over the last 8 weeks developed a hard tender lump in shoulder collarbone area on same side that the tonsil cancer was. 

She was recently in for a camera test as part of her checks and that came back clear but she asked them to check the lump and they've referred for a pet scan which isn't for another 3 weeks. We are worried sick. Has anyone any advice on what it could be? I'm terrified it's back and gone to her bones or something but trying to not think the worst as i know hpv cancer is very treatable but im not sure on the likelihood of reccurance or mets.

Thanks 

Olivia

Hi Olivia sorry your mum going through the waiting again. Yes h h p v cancers are eminently curable and reoccurrence s are extremity rare but they can occur. A pet fct scan will show if there's any active cells remaining. If it helps any my lump in my collarbone wasn't sore or tender it was just there. I know it's no help but try to remain positive dud the consultant do a fine necks biopsy ? Hoping for the best for all of you 

Hazel x

Thanks so much for your reply I've read through these threads over the last couple of years so many times. No they didn't do anything else except order a pet scan scheduled for Oct 21st which is about a three - four week wait since her check up. Then another app has been sent today for November 4th presumably for the results. I feel sick with worry. She originally had a large lump high on her neck that was completely painless and eventually got it biopsied which confirmed it was tonsil cancer. She went through hell during treatment and after like so many of you. It has come as a shock as she has been doing so well and apart from a dry mouth has very little other problems and now this lump which is just so worrying. I am trying to take comfort that the camera test looked clear and they didnt rush her urgently for a pet scan (i am nearly sure that her consultant put routine scan on referral letter) but then I keep thinking what if its a secondary cancer thats elsewhere

X

Hi Olivia. Did your mum have a Macmillan or a cancer nurse they are a source of good info. I still have email stress and phone number of mine. Maybe give them a call or failing that the consultant s medical secretary they may be able to re arrange the pet scan earlier or give you an indication of what consultant wrote. It coukd quite well be a reactive lymph node has mum had covid ? Remember not all lumps are xsncer east to say but hard to do. All I can send is hugs and please update us as you can ir pop on to rant if need be. 

Hazel x
 

We're actually in Ireland she had a chat with her nurse who put her on cancellation list but basically said that she was lucky to get scan on 21st as some are waiting mucu longer. So not much help really although I would love to know what was written on referral letter but all we know is it wasn't put down as urgent but routine. I'm hoping this means something but hard to tell. She had covid back in march of this year but very mildly so not sure it would have anything to do with it. I just keep thinking the worst again thank u so much for the replies I really do appreciate it x 

We're actually in Ireland she had a chat with her nurse who put her on cancellation list but basically said that she was lucky to get scan on 21st as some are waiting mucu longer. So not much help really although I would love to know what was written on referral letter but all we know is it wasn't put down as urgent but routine. I'm hoping this means something but hard to tell. She had covid back in march of this year but very mildly so not sure it would have anything to do with it. I just keep thinking the worst again thank u so much for the replies I really do appreciate it x