Topic: Newly diagnosed and scared
Hi my name is Porter and I am a 34 year old mother to two beautiful wonderful kids 8 and 6. I am not quite sure what to say or how to start. Back in 2010 due to some abdominal pain I went in and started having tests done. I was diagnosed with a liver hemangioma at the time and they have been monitoring it for the last 3 years. During this time it has increasingly gotten bigger. Back in may I went to the ER for pain thinking my hemangioma had burst. They did a scan and told me to follow up with my GI to once again be sure it was indeed a hemangioma. Well after 2 biopsies first one came back benign with a diagnosis of a rare hemangioma called sclerosed hemangioma I was disgnosed last week with this bile duct cancer. At this time I don't know what stage and meet with an oncologist next week to receive my first pet scan and consultation. I was told by my liver specialist it cannot be removed or respected due to where it is placed and its enormous growth. My emotions are running like crazy. I don't know what to tell my children. Everything I research seems to read very from with poor prognosis. Most my blood work is normal having very little symptoms aside from some pain and otherwise healthy. I am learning to find my faith on this new journey and would like just a little ounce of hope as I feel scared and hopeless and afraid.