Greetings,
I am an HCV patient as well as an auto-immune disorder. I was diagnosed with HCV Oct. 2012. I was told in December that I was chronic. I began to see a liver specialist by the spring of 2014 because my enzyme levels were rising. In the last year my enzyme levels have more than tripled. I was told last week, by my specialist, that I was to have some new tests done because my virus load did not explain my blood work nor did it explain why I was becoming so sick so quickly. Most people become sick from HCV after ten plus years of having the virus. I am becoming ill in the second year. We went back through medical tests and I have negative results all the way up to April 2012 (I was frequently tested because of some lifestyle choices I made that lead to harm-reduction drug rehab that did lots and lots and lots of tests on me)
He did a number of blood tests in the hospital except for one. He asked me to go to any lab (in Toronto, Ontario) and get an HCC surveillance test done - handed me the requisition and off I went.
I tried three different labs who all told me they did not know what an HCC surveillance was. I then called and booked an appointment through ads in the yellow pages. I had no idea what kind of test it was until I tried to find a lab able to do an Ultrasound for an Hepatocellular Carcinoma (HCC) Surveillance was I able to book the test.
This means, though, that I now know that my doctor suspects liver cancer.
I went on-line and found a medical peer-reviewed article about why HCC surveillance is done. It was authored by my doctor, since he is an well established HCC doctor, at Toronto General Hospital HCC surveillance is only done if a patient passes certain criteria, such as cirrhosis, with HCV, and particular features of poor liver function.
YIKES
I have not been told I am cirrhotic. I have spider angiomata and other features of having cirrhosis. That was a shock in of itself. That my doctor sent me for these tests and asked me about my insurance (I have private insurance through my profession even though I am retired) and discussed little else is also odd.
Has anyone here been through an HCC surveillance?
If so, could you share your experience with me? I did a search through older posts and could not find a post specifically about being sent for the test including why they were sent and what the results found.
I have other symptoms besides very high enzyme levels and spider angiomata. I have recently begun to smell like I am rotting - my urine smells like an old outhouse and my breath is disgustingly poopy-smelling. My urine is strange colours, as well, from dark to grey to very light, despite differences in colour it still smells foul, I am also losing lots of weight. I can eat yummy treats as well as a huge meal and still continue to lose weight. I have lost so much that I have gone from a size four to wearing kids clothes (boys size 14 and 16) that still are loose.
My skin is looks odd, like I am aging fast, I am losing elasticity and colour. I have the spider angiomata blotches all over my chest and upper arms, it is now coming up my neck.
Well, not to bore everyone, i am unsure if those and other things i am experiencing are liver related yet they are all new to me and coincidentally have begun in the last few months.
If someone can share an experience of HCC early stages up to the diagnosis and if they can relate to any of my experience, please do so. I will be so grateful. I am really trying hard to not think about this since my follow-up apt. is not until April 13, until then I feel so much like a leaf floating hither and tither above the ground unable to predict where I will land. Any feedback will be greatly appreciated. Peace and Wellness,
ctea