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Rare pelvic tumor, Ganglioneuroma, anyone familiar?

Women's Health | Last Active: May 29 12:13pm | Replies (4)

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@sueinmn

@dhansen78 I have long been aware of ganglion cysts & neuromas which form on nerves, but the term ganglioneuroma was new to me, so I went searching...
It turns out that it is related to both, forms along the autonomic nerves and is usually benign (non-cancerous).
You can read about it here:
https://medlineplus.gov/ency/article/001437.htm
Oncological surgery practices tend to prioritize their workloads based on the urgency of the situation, which means people with malignant tumors are seen first.

I would suggest that if your daughter's symptoms increase to include any numbness or loss of function in her legs or loss of bowel or urinary control, she needs to push to be seen sooner. Perhaps there is a gynecological or general surgeon who can see her sooner?
Sue

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Replies to "@dhansen78 I have long been aware of ganglion cysts & neuromas which form on nerves, but..."

Thank you for the reply, Sue
She has seen 2 OBGyns and a general surgeon, who said he has never heard of this type of tumor and his only knowledge is what he has recently read, thus, why he is referring her to the University of Iowa Hospital. The reading we have done leans towards it being a non-cancer, but, some of the information she is able to get to through her "mychart" mentions spindle cells, and larger cells with abundant cytoplasm (which again, looking up those terms, points to cancer). She has been told this is a 1 in a million case, so information certainly is limited.
Donna