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Rare pelvic tumor, Ganglioneuroma, anyone familiar?
Women's Health | Last Active: Dec 13 7:32pm | Replies (7)Comment receiving replies
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.
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@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