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Back to DeLiver A Cure - Message Board
MY treatment
Submitted by Kayte <kaytehollingsworth@gmail.com> on 20/Sep/2009
68.59.93.80
Message:
I just want to start by saying I have been reading this forum for the last year, after i was diagnosed with FHC following my resection. I have learned a lot form everyone's posts about treatment and dealing with this scary disease. This post i pretty long, but i didnt want to leave anything out. I would like to hear from others, how you were diagnosed, what treatments you have tried, what you have learned about FHC, anything at all. I have found that the most scary thing about this disease is the lack of information out there, and feeling alone because it is so rare.
Last year I went to the ER with extreme upper stomach pain, i had diffuculty breathing, and came close to passing out a few times. Drs did an ultrasound and MRI and found a mass on my liver. At first they said it was an adnoma caused by birth control. Within about two weeks I had surgery to remove the mass. I was diagnosed after surgery with FHC, but was told essentialy I was cured, to go on and live my life. This was Aug '08, I was about to turn 23 and was getting married in Oct. to a wonderfull man who slept for a week in a chair that didnt even recline in my hospital room, never leaving my side.
I followed up with a 6month scan in Feb'09, which was clean. Leading up to my year scan in Aug' 09 I started to experience some tiredness and extreme heartburn. One night I had stomach pain that was similar to the first time, so I went to the ER, where the Dr did ONE blood test, NO physical exam, and said ther is NOTHING WRONG with you, why dont you go see your Dr. My Dr is out of state about a 6 hr drive. I had a scan coming up in two months and my dr said it might have been acid reflux, to see a GI Dr near home. I ended up having a upper GI scope which only found inactive irritation.
IN Aug'09 I had my 1yr CT scan. It found that I have another mass, this one is bigger than the first tumor. The Drs had a hard time figuring out the location. It looked like it could be either on my liver or on the pancreatic head or that it could be a lymph node. They said its looks like it might be pressing on the spine and pushing up on my duodenem. They finally decided it was not on my pancrease (thank God) but that its location was too near the portal vien and also to big to do surgery. Right im taking Xeloda chemotherapy and just finished high dose sterotactic radiation. My drs think this will help hold the tumor growth at bay, and hopefully shrink it some so that I could have another liver mass resection. Of course right now we are in a wait and see stage that I hate. The good news is that I feel pretty good and havent really had too much to deal with in terms of side effects.
Thank you so much for reading this. Please reply with your story. I really think that we can learn a lot from each other. After spending a lot of time doing research on FHC, only to find one or two lines about it, I really think that we are our own best resources!!!
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