Hi @Tracey4u68 ,
Sorry to hear of you diagnosis. Its never easy to hear you have cancer, let alone a rare one. I have provided a link to a thread with people who were diagnosed with this type of cancer. You may find some info in there to answer some of the questions you undoubtedly have.
I hope you are keeping well enough now. How are you coping after the surgery? I know It can be quite traumatic.
I have terminal kidney cancer & was diagnosed from a lump in my neck that was 9cm long on the inside. After surgery on the neck, I lost the nerve controlling the left corner of my bottom lip. I have to sometimes pull the lip out of the way when I'm eating otherwise I'll bite it. I've since had many more little tumours growing in that area, & some were around the parotid nerve. At one point I was about to have some of them removed & they were going to have to have the plastic surgeon work on me afterwards because of all the loss of control I would have had. Anyway, at the same time I was having trouble with a tumour in my lower back affecting my left leg. So instead of the surgery, it was decided radiation would be tried in both areas at the same time. That stopped the growth that was happening so I thankfully didn't have to go thru with the surgery on my face.
Anyway, I hope you are taking care of yourself. What, if any, treatment are you having?
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