Rare pelvic tumor, Ganglioneuroma, anyone familiar?

@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

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

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

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!

@dhansen78
Do you mind sharing your experience with ganglioneuroma treatment? I, too, have a ganglioneuroma tumor in the pelvic region and it is painful. The surgeons I've interviewed have given me mixed opinions about its removal. As a result, I've done nothing in 6 months and am scheduled today for a second MRI to see if tumor has grown. As the pain is increasing, I should seek treatment. As you know, the tumor is so rare, particularly in this location, very little is known about this tumor type and its removal is complex. I'd like to know if you've found someone with some expertise, if that's possible. Thank you! K

Yes, I am happy to share what I know. My daughter (in her 40's) is the person with this neuroma. We live in Iowa and she was sent to the University of Iowa Hospital for treatment. Her surgeon there, watched it for a length of time and ended up doing gallbladder surgery due to a growth there also. He explained about the placement of the neuroma and the dangers of doing surgery. It hadn't grown over 6-9 months, so she was put on a yearly checkup and mri to see if there are changes. Her pain has stayed fairly consistent and is not at a level that she can not handle it. The hope is that is will stay dormant and not continue to grow. Her surgeon is one that is young but, takes all the hard cases, and we have complete faith in his knowledge and abilities. So, basically, it is sit, wait and hope it doesn't grow......if it does, that is when surgery will be discussed. I would love for you to keep me updated on your journey especially due to the rareity nature. Thank you for reaching out.

@dhansen78 Thank you for responding. The information you have given about your daughter's experience with ganglioneuroma is helpful. My second MRI showed that the tumor had not grown in 6 months. The pain has increased but like your daughter, I think I can tolerate it. The location is in the ischiorectal fossa which complicates removal. The best way to reach a tumor that deep is through the stomach. Surgery, even with computer guidance, is risky and because the location and tumor are rare, the experienced surgeons I've interviewed in the So California area where I live have seen very few cases. One surgeon (20 years experience) said she operated on the ischiorectal fossa twice. One surgery was successful to remove tumor. The other one wasn't. Like your daughter I am thinking as long as the tumor doesn't grow, I'll probably be ok. Though one surgeon told me that it is possible for the tumor to become malignant over time and that it's better to remove it when I'm younger. However, I don't feel confident doing this with the surgeons I've met. My thoughts are with you and your daughter. Something like this is not easy. Again, I appreciate your response to my inquiry. Please keep me updated if things change and I'll do likewise. All my best—K