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Rare pelvic tumor, Ganglioneuroma, anyone familiar?

Posted by dhansen78 @dhansen78, May 23 10:00pm

My daughter has been diagnosed with a rare tumor, a Ganglioneuroma, located in her pelvis Does anyone have any knowledge or information on this type of mass? The medical community is moving very slowly, this all began March 11 and she has been sent to a Oncologist Surgeon.....after 1 week, she has not been contacted for an appt,which I suspect will be 3-6 months out. Meanwhile, she continues to have new and worsening pain. I am extremely interested in any information any of you can provide, thank you.

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Mentor
Sue, Volunteer Mentor | @sueinmn | May 28 10:02am

@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

REPLY
1 reply
dhansen78 | @dhansen78 | May 28 10:34am
In reply to @sueinmn "@dhansen78 I have long been aware of ganglion cysts & neuromas which form on nerves, but..." + (show)
@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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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

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | May 28 10:43am
In reply to @dhansen78 "Thank you for the reply, Sue She has seen 2 OBGyns and a general surgeon, who..." + (show)
@dhansen78

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

Jump to this post

For rare cases like these, the University is certainly a good choice. Has she considered contacting Mayo Clinic in Rochester? My brother has excellent care there for his one-in-a-million lung condition.
http://mayocl.in/1mtmR63

REPLY
1 reply
dhansen78 | @dhansen78 | May 29 12:13pm
In reply to @sueinmn "For rare cases like these, the University is certainly a good choice. Has she considered contacting..." + (show)
@sueinmn

For rare cases like these, the University is certainly a good choice. Has she considered contacting Mayo Clinic in Rochester? My brother has excellent care there for his one-in-a-million lung condition.
http://mayocl.in/1mtmR63

Jump to this post

Yes, Mayo is a consideration. She found out yesterday that her referral had been forwarded to the women's health dept at U of I, so, after 16 days of waiting for them to call and schedule an appt, the referral has been forwarded to the surgical/oncologist it was supposed to go to and it's another waiting game. She is so frustrated!

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