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

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

I just wanted to post to say thank you for detailing your treatment and side effects in such away it has really helped me understand what i am about to go through. 

I have been diagnosed with squamous cell carcinoma ( oral cancer) not confirmed yet if it is p16 positive.  I have had surgery to remove the lining of the base of my tongue ( mucosectemy) tonsils out and some lining of the back of the throat removed. 

I had a meeting with my ent surgeon yesterday who has told me i will see oncologist tomorrow and get fitted for a mask as im going to be getting 30 fractions of radiotherapy. plus or minus chemotherapy depending on what oncologist says.  I am also having to go to the dental clinic to see if i need teeth removed but i'm told i dont have to agree to it.  The radiotherapy is to be given over a 6 week period. 

I'm very anxious about how long ive had cancer in one of my lymph nodes and the fear of it spreading further but i'm respectful of the measures needed to be taken to ensure accurate treatment. 

My surgeon has said i should not opt for a feeding tube as its very important that icontinue to swallow and keep those muscles moving and follow the speech therapy guidence to the letter. He said it's not an acute pain from radiotherapy and shouldnt hurt as severe as the surgery did. 

I am concerned greatly about the chemotherapy option as i've read that chemo therapy can destroy your voice but i'm told the chemo therapy for this type of cancer is not the same as other cancers and will not have any affect on my voice at all. Can anyone confirm?

I have private health care and wonder if i should be pushing for proton therapy as its apparently less damaging?