HPV Negative SSC Tongue/Lymph nodes

Hi MrsHRH 

MrsHRH said:

My question is - up until this point they havent looked anywhere else to see if the cancer has gone anywhere else. No chest xray or PET scan - we have an appt with an Oncologist next week - is this likely to be discussed then? 

Yes. More than likely. Make sure they explain what they plan and why

MrsHRH said:

its only through reading this forum the I have realised she will need a PEG? Is that just what happens or is it a 'see how you get on' kind of deal?

Radiotherapy damages the whole mouth and throat. The effects are magnified if you add chemo. It becomes at first difficult then impossible to swallow so all nutrition and importantly pain relief goes through tube. 
Your mum may manage without, some do but very few. 
My trust didn’t routinely place PEGs. I had a nasogastric tube when I needed it in week 4. I had it in place for 8 weeks. 
It saved my life. 

MrsHRH said:

see how you get on' kind of deal?

They take a couple of weeks to settle so best sorted before treatment starts. Which hospital is your mum being treated at? 

Thank you Beesuit !

She is being treated in Poole Hospital, Dorset.

Give her a big Community hug from all of us. 
I hope you can stay with us. There’s always somebody to talk to 

Am I wrong but I think in England and Scotland feeding tubes are automatically put in. I'm in Northern Ireland and that doesn't happen unless your weight drops. 

Scotland....PEG was part of the Chemo radiotherapy package, overnight stay in hospital for observation....5 days of moderate abdominal muscle pain well managed by pain meds....life saver for me.

Peter 

Thank you 

Jg123 said:

Am I wrong but I think in England and Scotland feeding tubes are automatically put in. I'm in Northern Ireland and that doesn't happen unless your weight drops.

Hazel was treated in Leeds and the protocol there was reactive NG. Similar where I was treated in Swansea...though I realise that is in neither England nor Scotland nor Northern Ireland 

Hi - I had a PEG which was inserted at Salisbury and treated in Southampton.  I do know that if I had needed a RIG that would have been done in Poole, but my treatment would have still been in Southampton.  Personally I would again opt for a PEG/RIG rather than an NG.  Part of that is because I don't fancy the NG down my throat and part is because I like to be prepared and an NG is a reactive solution.

Has your Mum had a CT scan?  Often those include the chest area during the investigations and will show if there has been some spread.  Previously I had PET scans before treatment, but this time I only had one after.  You have a PET scanner at Poole so that will make travel easier.

Hi Welcome to our small commu community group. My feeding tube was a n g tube up through my nose into tummy week 3 of treatment I took it out 6 weeks later. Some just fit them automatically some do them like mine reactively if it is a feeding tube that’s going in the tummy try and push for it to go in a good few weeks before Radio therapy chemo starts

any questions just pop on here as I want someone I wish somebody around to help

Hazel