Looking for some advice for my mom, who's gone through 8 cancer battles over the last 12 years. She's had 4 of those cancers in her mouth, one of which lead to the loss of about half of her tongue. Over the last 9 months, she's been in a ton of pain, with the majority of the pain starting from her ear. In the last month or so, she's had a lump form on her neck, right below her chin. Last week, her chin became very swollen and numb (still is).

Through all of this, she's had about a dozen biopsies done and all of them have come back as non-cancerous. Her doctors, who have been great to her throughout all the years, are taking a wait and see approach. She has another biopsy scheduled for tomorrow, as well as a meeting with the doctors. They're convinced that there's a deep rooted cancer somewhere, but can't find it.

So... while we're always happy to hear that there's no cancer, I can't stand to watch my mom suffer this way. She's been going to pain management, but her meds have been upped so much that she's hallucinating, and still in pain a fair amount of time. She's pretty much bedridden, just waiting for her next biopsy.

My feeling is that we may want to try seeing an ENT or a neurologist, with the assuming that there could be a nerve issue. Her oncologist and surgeon have said not to. Curious if anyone has any thoughts about what she's going through, or suggestions on what I could ask her doctors tomorrow.

Happy to provide more info if needed. Thanks!
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Very sorry to hear of your mom's problems over all these years. I would certainly ask to see ENT or neurologist. Why should the oncologist advise you not to? I am in a lot of post treatment pain and am on too much medication for my liking, but I know that, having had tongue cancer, I have trigeminal neuralgia which can cause all sorts of problems. Fortunately I have very tolerant doctor whose idea it was to look at the trigeminal problem (together with my Chiropractor). ENT approved of this approach, whereas I only got shrugged shoulders from oncologists when they could find nothing wrong with my ears. But then they are very specialised and are not specifically looking for other problems - even if they understood them as they are outside their field, so to speak.

I think I am being referred to a speech therapist, but the appointment hasn't come through yet.

Please let us know how you get on.

Life's a bitch - then it has puppies.

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