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Re: Re: I'm new here/my story
Submitted by Casey on 29/Jun/2010 in reply to Re: I'm new here/my story posted by Georgene on 28/Jun/2010
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Hi Georgene. Thank you for your response. The tribute to your son is so moving, thank you for sharing! I've connected with two other FHC patients so far. It seems we're so few.
I'm 31 years old and discovered the tumor last summer while I was 6-7 months pregnant. The tumor was being pushed right below my rib cage and I thought (being my first pregnancy) that it must be part of the baby. I had my doctor feel for it and he wasn't concerned since pregnancy does strange things to the body. Fast forward 3 months after my son was born I felt it again, though much lower. Again my doctor didn't know what it was so ordered a series of scans....that's when we found out it was on my liver. I was then sent to a local GI doctor, who diagnosed it as FNH and said it was okay to leave in, I could live a normal life. My family and I felt the diagnosis wasn't complete so we travelled to Seattle to the University of Washington to see a liver specialist (surgical oncologist). Him and his team also thought it could be FNH, though it was showing some atypical characteristics so they recommended a resection. I had my resection 4/26/10 and it wasn't until the pathology report came back a week later that we found out it was FHC. It doesn't appear to have infected my lymph nodes and was non-invasive at time of surgery. So now I'm waiting to do follow up scans/blood work every 3 months and hope it never comes back.
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