- CASE FILE
I have a rare disease called Cystic Mesothelioma. Since it is rare and doesn't have a known cause, treatment options are limited.
ABOUT THIS CASE FILE
Cystic Mesothelioma is a very rare disease. The first case was identified in the 1970's, and to date, there have been very few documented cases. I consider myself "Patient #154".
Because the disease is so rare, there is no known cause. In the cases that have been documented, even after treatment, the disease has a 50% recurrence rate. The disease is initially benign, but if left untreated, it can become malignant.
I was initially diagnosed in June 2018 following gallbladder removal surgery. In September 2018, I went to the University of Michigan for open surgery (stem to stern) to remove all of the cysts and to undergo HIPEC treatment. Now, less than a year following surgery, I am having symptoms again. I'm devastated by this, and I am, understandably, not eager to undergo the same major surgery followed by HIPEC annually.
A few months after my surgery, the University of Michigan published an article about me. For a complete summary of my condition, symptoms, and treatment thus far, please see that article here: https://healthblog.uofmhealth.org/cancer-care/womans-rare-diagnosis-prompts-sweeping-treatment-to-target-cysts