Epitheliod Hemangioendothelioma

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Epitheliod Hemangioendothelioma

Postby lsmw » Mon Sep 16, 2013 4:51 pm

Six years ago, I began to have an odd pain in the upper region of my abdomen. If I didn't take some type of pain med it would get worse throughout the day. By the end of the day, I would become chilled, have a low grade fever, and ache as if I had the flu. The doctor I saw didn't seem concerned about it, so I continued taking OTC pain meds each day for 2-3 years. Then I began having pains in the rectal area. I had a colonoscopy which was clear. The pain got worse and seemed to radiate from my lower back area through to my lower abdomen. I began to think maybe it was a female problem. A sonogram showed everything to be normal. The pain by this time was so severe I was taking pain meds around the clock. I had an MRI- everything was normal. An orthopedic dr gave me steroid pills which stopped the pain after about 3 weeks. Over the last 2 years the pain had begun to come back, although not as severe and not everyday.
In June of this year, I had an ATV accident and broke 4 of my pelvis bones. When x-rays and CT scans were done, several masses were found in both lungs, my liver and my spine. After a liver biopsy and 2 lung biopsies, I was diagnosed with Epithelioid Hemangioendothelioma. My oncologist and the lung specialist had never seen this type of cancer and had no experience with it, so I was sent to MD Anderson Cancer Center in Houston, TX. I saw 2 doctors there, a thoracic doctor and sarcoma doctor, neither of which knew anything about it. Now I am waiting for them to find a doctor who can give me answers. I'm told it is very slow growing and I have probably had it for several years. I'm thinking the pains I was having the previous years were from this growing in my body, but the doctors don't think it is connected. Since my accident, the pain has come back. I now have it everyday but not as severe and 1 pain pill will take care of it. Is there anyone else who has had this in as many areas of the body? I'm worried that the doctors don't seem too worried and are taking their time finding answers for me.
Posts: 1
Joined: Sun Sep 15, 2013 11:35 am
Cancer Diagnosis: Epitheliod Hemangioendothelioma
Relationship To Patient: Self

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