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.
thanks for asking and sorry I’ve been quite. Grab a brew…
op was 10 hours. Good outcome in removing left and central lymph nodes and mass, and thyroid. External drains fitted, no tracheotomy needed all as good if not better than hoped.
that was 3 weeks today Wed.
the Thurs PM things started to go a bit wrong. Swelling in the neck increased quickly over a couple hours and was a rushed urgently to theatre for a tracheostomy to save me. Was touch and go. Also have had a nasal feed tube so have been nil by mouth since I came into hospital.
have now had 2 Chester infections, a skin infection and then again deteriorated over Friday & Saturday, Sunday required emergency surgery to open up the neck and clear out a pocket of infection, and pack this. A new tracheostomy also needed to be fitted.
went back to Theatrea again yesterday for the packing out, wash out a clean and further packing with more drainage. Another 3 hours.
today, they are going to see with morphine and aomeaedation if the packing can be changed bed side to prevent having more general anaesthetic as I’ve had a lot, but if needs be then it will be back to theatre. on top of all this, I can’t swallow properly so having scheduled a stomach feed PEG for next Monday, then in a few weeks reconstruct my throat with some chest muscle.
i have lost a nerve to the left vocal chord (currently zero voice anyway as it all needs to settle and reduce swelling) and the nerve to the left shoulder is damaged so have a mobility and pain issue theee. But morphine is my friend!
finally, (for now) the main news. Had a review with the surgeon and everything that has been removed has been analyzed and confirmed as 100% Anaplastic thyroid cancer. There is no more treatment just repairing what’s done and what crops up now. I have reached the end of that bit of road.
will now just wait and see. Going to be at least another 2/4 weeks in patient. It’s tough, and sometimes hard to avoid the darker thoughts but I’ve managed somehow to keep my humour (I think it’s a bit warped that’s why) so sod it long may that still be helpful.
i am extremely grateful despite all this that I am still here. I am lucky no matter what as we know 8/19 weeks was the initial life time give. Back last summer. Just want to get home and at least enjoy this one with my wife and make out first anniversary in September. I have the new grandchild that I’ve only seen a few times and is now 5 weeks old so want to get back to enjoy that time.
I wish everyone taking the time to read this the very best. I’ve hard my dark hours, as I man I’ll admit I’ve cried ( not something I have ever admitted) but we need to stay as focussed and positive as possible and give this cancer something to think about.
No there were not any available - my oncologist just tried radical radiotherapy and chemo combination - first chemo Docetaxel I was allergic to so swapped to Cistplatin x
Hi Dave, you are doing amazing, you have been through so much and still going, sending positive vibes and healing energy, really hope you have a wonderful anniversary xx
Sending you all the good and positive vibes for a speedy recovery so you can go spend time being the fun cool grandad and hope you have a lovely first anniversary with your wife!
Just fell onto this forum while trying to get some answers and support. I’ve just read all of the messages and was looking forward to hear about how each of you have handled the news and the treatments.
My mum got diagnosed with anaplastic thyroid cancer late February. I’m currently living in London but originally from Montreal, Canada so that’s where my mum lives and is getting treatment. I found it really hard to be away as I’m realising this might be the last moments I get with her. I flew back for three weeks in March and accompanied her at hospital while we were being told the news.
She is on a new treatment I think which combines targeted therapy and immuno therapy, I was surprise to see no one was on. The chemo and radiotherapy seem more commun I gather here.
Thank you for sharing your experiences, the good and the bad, somehow I feel less lonely. Good luck to all of you and looking forward hearing about your updates!
