- CASE FILE
I have a benign mesothelial neoplasm with uncertain malignant potential. I’m not aware of anyone my age (19) with a similar condition.
ABOUT THIS CASE FILE
I was diagnosed with a benign mesothelial neoplasm with uncertain malignant potential (I’m gonna call it a BMNUMP to make it a bit easier) about a year ago. It was originally misdiagnosed as a lymphatic malformation due to its multi-cystic makeup. I was given the medication Sirolimus in an attempt to shrink the “malformation” but it seemed to just keep growing until it was causing me so much pain that I needed to have it removed. I went into surgery on June 25th of 2018 for a debulking of my lymphatic malformation. Over 95% of the mass was removed, which was about 7 pounds. Because it was not malignant, some of the mass down by my rectum was left because the risk of going down to remove the mass outweighed the potential reward. After the surgery, I learned that this mass was not what it was originally believed to be. Samples were sent up to Sloan-Kettering hospital to have it sequenced, but because of its abnormal makeup, the sequencing failed 4 times. My oncologist was the one who labeled it as a BMNUMP because that was the best description he could come up with for the mass. To monitor the growth of the mass I get MRIs every three months. The mass has been slowly growing, but around the one year anniversary of my surgery, it started causing me pain that I haven’t felt since before surgery. I had an MRI only a month after my previous scan to find that it grew faster in that one month than it did in the previous six combined. Because the sequencing of the mass continues to fail, at the moment, the mass cannot be diagnosed. If my pain becomes unbearable again, another debulking will need to be performed. My oncologist is working on regimens for me that I may be able to start that could slow, and hopefully stop, the growth, but he just has to base these off the literature he finds, which are all written about patients over triple my age. I don’t know what the next step is quite yet but I want to stay out of the operating room as long as I possibly can if that’s an option.