Hi Evereyone
Thought i would provide an update, incase anyone else unfortunate enough to be diagnosed with SNTCS (sino nasal terato carcino sarcoma ) is looking for info.
Thought i had a head cold that wouldnt go away. Then they thought it was polyps. Surgery removed them, sent for biopsy July 23.
Diagnosed Sept 23 with cancer, didnt get full diagnosis until Oct.
Chemo (cisplatin and etoposide) in Nov & Dec, only 2 rounds as it didnt appear to be successful on scans. Was told i would be moved onto palliative care with 12 month expectancy.
Pushed for debulking surgery, hospital messed up organising the op so switched to another hospital and team.
Debulking/resection of tumour end Feb 24. Managed to get 90% out, just left a nodule next to my brain.
Symptoms dissappeared soon after surgery, scan after 4 weeks showed that there may be clearance to get to the rest of it, they are going in again this week to hopefully remove it all.
Proton beam therapy is planned afterwards, expected to be for 7 weeks, hopefully this will start in May/June.
I decided not to give up when told about palliative care, took other opinions and pushed for surgery. Whilst not out of the woods yet I am hopeful that this can be beat, if only for a few more good years.
If anyone is in a similar position and wants to find out more about my journey to see if it can help them, please contact me.
