Hi Samantha,

I've had 7 recurrences and had radiation and chemo twice. Most of my recurrences were caught early but I have twice had it metastise to my neck and jaw. The worst recurrence I had was a recurrence on my tongue in August 2009, where I could see the hole in my tongue grow almost daily. I had two partial glossectomies (the 2nd because of insufficient margins) and within 3 weeks of this surgery I had 6 cancerous nodes around my left jaw and in the right side of my neck. I had stabbing head pain and initially I was told that it was inoperable. To cut a long story short, after alot of experts looked at me and my previous treatments it was decided to remove as much of the 6 tumours as possible surgically and then reradiate. I had radiation twice daily (and Cisplatin 1 x weekly) over a 3 week period as an inpatient. My radiation oncologist later (after treatment) told me that he had rated my chances as less than 10%. He still likes to remind me, especially when I whinge about some of my side effects of radiation, that he never thought I'd be here to have this conversation with him. I'm still here more than 18 months later, albeit having just had freeflap surgery for a recurrence in my left cheek. I'm at home recovering from that now.

What you've been through already is unbelieveably cruel. I hope that there is a miracle out there waiting for you. Get another opinion as Christine suggested and you may just find a medical team who are willing to push the boundaries, or who are able to put you into a suitable clinical trial. Try to maintain a positive attitude and yes radiation can kill tumors without surgery. There are some on this site who have only had radiation and chemotherapy because of the location of their tumors and they are now cancer free.

I wish I had more to offer you. It's heartbreaking to see this disease hit someone so young and with so much to live for. My thoughts and prayers are with you, your daughter and family.

Sue G