I had my hospital appointment yesterday and it was no surprise to be told I have jawbone cancer. However it was then a shock to be told that they don't yet know what sort of jawbone cancer it is, but they think it is probably jawbone sarcoma. Apparently this is a rare cancer which is only treated at 2 centres in the UK. They are already liaising with the Birmingham Sarcoma Centre about me, and if the diagnosis is confirmed then I'll be transferred to them to look after me.
They said that treatment and prognosis will depend on what sort of jawbone cancer it is. With sarcoma the treatment is usually neo-adjuvant chemo to shrink the tumour, followed by surgery and then adjuvant chemo for further shrinkage. They can't give an idea of outcome as this would depend on how far it had spread, how healthy I am generally, and how well I respond to chemo.
So the next step is for me to have more detailed scans and then they will know if it is definitely sarcoma or another type of jawbone cancer. It's a lot to take in but fortunately there was a Macmillan CNS in the room with me and she made plenty of notes. I filled a couple of pages in my notebook, and my husband was there to help me remember as well. I can ring my CNS with any questions, and she's arranging for me to have a Holistic Needs Assessment (HNA) in the next couple of days. This is something new since my previous cancer in 2013, but it sounds as if it will be very helpful.
Heavens Margaret. At least things are moving
Holistic Needs Assessment (HNA) in the next couple of days. This is something new since my previous cancer in 2013, but it sounds as if it will be very helpful.
I had one of those, run by MacMillan in Carmarthen. It was the only place I cried in public.
Deep breath and fingers crossed. All the hugs in the world. Xxxx
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
