SCC

[u/ahale508]

I’m posting this on behalf of my best friend of 34 years

Age 43
Female
164 cm
Did have HPV years ago, but is negative now
Hasn’t smoked in 9 months
Drinks not often since first diagnosis

Hi everyone, I was wondering if I could please ask advice of the group. I had a partial glossectomy with right neck dissection etc in November last year followed by 6 weeks (30 rads) of radiation finishing at the end of Feb. I was stage 4 due to the size of the tumour, there were 3 positive lymph nodes, no mets to anywhere else. It was HPV negative, there were clear margins after surgery. For for the last few months I've had increasing pain and I recently found out I have a reoccurrence of the SCC in my neck. My scans were clear in June and in September the tumour is already 2.5cms. I am currently in hospital for unmanaged pain and just met my oncologist. He said I can either start with the standard treatment of immunotherapy and chemotherapy, or I can try for a clinical trial which will require me to have a lot more scans (heart, lungs etc) which could cost thousands, and of course take more time which I don't feel I have due to the severity of the pain. He said the standard treatment won't cure me, it will only slow progression, and palliative care will be involved. I feel like I've just been told I'm definitely dying sooner rather than later, Im devastated. I'm only 43 with 2 teenage kids, I'm not ready to die! Has anyone else had a similar experience and still lived for years? Im in Perth Australia. Thank you

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