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,

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 

I spoke to my mams team today and they said they did put the referral through as urgent and then the Radiology team put it down in there system as routine. So really not sure what to think and fearing the worst now after speaking to her team. They mentioned they were hoping it was post radiation damag. But I'm thinking provably not likely

Hi Try to remain positive the treatment is brutal I kniw I've bern there. I've now developed fibrosis in my neck I csn manage it but the hardening  of tendon s takes its toll. My dentist in may put me bsck in 14 day cancer pathway she saw something in my gum she didn't like. I knew it was food trauma I had eaten a ryvita  day before but I referred to her as the expert. There is a really long list of in going side effects we can all be susceptible to. Her team is doing what they thjnk us required never easy but you have to go with it I'm sorry to say. Just kerp in yiu thoughts 90 % cure rate and reoccurrence s are extremely rare. Hugs

www.e-roj.org/.../view.php

thus gives an indication of what we may or may not get  

plus I forgot I've got a vocal chord cyst due to lack of saliva  that was discovered a year ago  

Hazel xx

You're so kind taking the time to reply and I'm sorry to hear you have fibrosis but glad to hear you've remained cancer free I can only hope and pray the same for my mam. Her team said they found hard lump and as she has had radiation they couldn't determine what it was through examination alone so that's why have ordered pet scan and then mentioned maybe a biopsy too but I feel as if they know what it is already and are just doing these things to confirm it is so hard to stay positive but I do keep thinking that her type of cancer had such a high chance of cure and when she got the all clear two years ago we were so happy I just pray that it hasn't gone elsewhere. Do u know if it was a secondary tumour would her camera test have come up clear? Hard to find information on Google about this x

Hi my cyst on vocal chord showed up straight away on my camera scope. Hard tissue could well be fibrosis residue from treatament. My consultants are very open and I would like to think k if hey had any doubts they would tell me what they were  looking at. My issue with dental referral the ent consultant in max fax looked at my gum ok it was ok  2 weeks later and nothing was there but dentist had taken photos of it and he had them in computer. In his words dentist did right thing by sending me ti be checked  iver as from the photo it coukd have been the start if a new growth. Thankfully it wasn't it was literally food trauma .4 years ago I like your m am had no issues apart from Larry the lump so know where you are coming from. I do hope you get a speedy response 

Hazel sorry for late reply we're in Spain and I was our on my bike. 
 

Hi all,

Entering week 4 post radiotherapy for base of tongue cancer. Have PEG fitted but so far haven't had recourse to use it. Managing to swallow ok now for the most part. Mouth very dry at times especially middle of the night. 

As far as meds are concerned for throat pain relief  I'm still taking soluble paracetamol( 2 x 500 mg tables ) 4 times a day, Liquid codeine ( 20 ml ) 4 times a day, together with oxcetaine( 10 ml) .Also Difflam  mouthwash 4 times a day and Caphosol dissolvable tablets ( 1 tablet in water 6/8 a day).

My question is, how long should I be taking this amount of medication for ?

Hi all,

Entering week 4 post radiotherapy for base of tongue cancer. Have PEG fitted but so far haven't had recourse to use it. Managing to swallow ok now for the most part. Mouth very dry at times especially middle of the night. 

As far as meds are concerned for throat pain relief  I'm still taking soluble paracetamol( 2 x 500 mg tables ) 4 times a day, Liquid codeine ( 20 ml ) 4 times a day, together with oxcetaine( 10 ml) .Also Difflam  mouthwash 4 times a day and Caphosol dissolvable tablets ( 1 tablet in water 6/8 a day).

My question is, how long should I be taking this amount of medication for ?

Hi well done on completing treatment. I started a phased withdrawal arou g  week 6 to start with but for me it was too soon so around 2 weeks later I started to reduce the cocodomol I was taking. Until inwas just in paracetamol . It took me 3 weeks by slowly reducing the opiates as for the mouth washes I still today use bio xtra and will use duraphat forever. If yiuve no mucus stop the caphosol niw if it proves uncomfortable  reduce it instead. 
best wishes Hazel 

Thanks Hazel. I shall start reducing codeine first .followed by paracetamol. Was told when Campbell runs out to revert to plain salt and water mouthwash.

Liam

Hi Yes that's the way to go I reduced gradukaayntbatbway yiu avoid opiate withdrawal. As for the caphosol my hospital,didn't prescribe it all I used was a salt water and baking powder solution. 
pone litre water one teaspoon salt and 1/2 baking powder mix it up and store in a bottle.

Best wishes Hazel xx

How long should I continue taking Difflam mouthwash for, post radiotherapy.?

Hi I didn't use that I only had saltwater rinses. All I can say once you've stopped the opiates see how your throat pain is .youmatnotneed it. Change to gentle mouthwash I use bioxtra on prescription. 
Best wishes Hazel x

[@RadioactiveRaz]‍ 

How do you find the duraphat do you tolerate it ok? Personally I have no issues but know some people do.

Do you find you have to brush your tongue after eating or drinking tea?

Hi most days I'm fine with duraphat. If I have an ulcer pop up I change to Ora nurse which I buy from Amazon. No I have no issues never have had to brush tongue at any time. 
i am 4 years post radiotherapy now. 
Hazel