Newly diagnosed with hyalinising clear cell carcinoma

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Newly diagnosed with hyalinising clear cell carcinoma

I've recently been diagnosed and was told by my doctors that this is a rarer type of cancer (The state I live in would see one case of this per year if that). It's behind my nose going up to my ear and I'm looking for anyone who may have/had this cancer as well. I'm a mother of four children all under 10 years and am not quite sure where to look for someone to speak to about this.
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