Hi anyone got any experience of this? Recently (Last week) advised I have this and there is basically nothing to be done. Seems to be very little info and certainly nothing positive.
following the chemo / radiotherapy combo had my PET scan results yesterday.
1) the cancer has not spread beyond head and neck
2) It’s now visible in multiple left side neck lymph nodes but voicebox and thyroid are clear for now
3) referred for possible surgery to remove lymph nodes but told this is unlikley
4) a larger biopsy of a remaining tumour is being planned
5) two other treatment options depending on result of point 4 - tablet radiation therapy or a more intense stronger chemo regime.
have been advised these are merely to keep things at bay and will be rough treatments. As nothing is planned for next couple of weeks as the consultant surgeon is on Leave then we called at a travel agents on the way home and fly to Turkey on Tuesday for a week. Might be the last holiday (and our honeymoon…) this year if any of the treatments go ahead…
wishing everyone all the best facing this - don’t give up and don’t believe them when they say theee is nothing can be done, no treatment and to go away etc. I was told this 5 times…
Hi Dave, that sounds positive, it’s good it’s not spread to rest of your body, fingers crossed the next treatments give you more time with your family, have a great holiday (honeymoon) make those memories, I’m really pleased for you, it’s nice to hear, take care x
Hi Dave, thanks for posting the update. Sorry you are going through this and have such a rough path ahead. I'm so glad you're able to fit in your honeymoon that'll be so special for you both. Best wishes x
Good luck! I had that combo - cistplatin eventually as was allergic to docetaxel!
only advice is to ask them for the flaming gel cream and start using it now - all around your neck and down to your collar bone. Loads of it. Really helps to delay the effect of the radiotherapy on the skin.
I had a follow up core biopsy on Thursday on my thyroid and have been panned for radical surgery on 27th March - left side and central neck dissection, thyroidectomy and collar bone split and rebuild (to allow access to a tumour). 8/10 hour op forecast so feel It’s going to be tough. There is a chance when I am on the table and they actually get eyes on they may well abandon things and just close up -‘-and a number of risks to the surgery for nerve damage and voice impairment etc but I have every confidence in the surgeon and his team. struggling today with the swelling from the biopsy but just resting watching Wales getting hammered in Rugby… oh dear! wishing everyone well and let’s all keep positive and fighting!
Hi Dave fingers crossed your operation goes well, so sorry your struggling with swelling, it’s good your staying positive, my eldest brother’s mother-in-law is really not good with her cancer and said yesterday she wants to die, my mum was always positive and smiling
