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707903 tn?1228961420

HCC Surveillance and FEAR

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
6 Responses
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789911 tn?1368636783
i just read your post.  I have no experience with this except for having HCV but i treated and am undetectable.  I just wanted to let you know that I am praying for a good outcome for you.  I hope someone chimes in and can give you some information!
Helpful - 0
707903 tn?1228961420
Thank you so very much, very nice to have read your post - it felt great to read your words of encouragement and more so that you were successful with treatment and that the virus is undetectable - congrats! super!
out of curiosity - which treatment did you do? I am hearing all sorts of success stories for HCV patients lately. The new treatments seem to be making a huge difference. Were you on one of the new ones? Thanks for the nice words. Peace
Helpful - 0
Avatar universal
COMMUNITY LEADER
Welcome to the site ctea! Unfortunately it's due to chronic liver issues. Not much fun I'm afraid but there are many of us so banding together for discussion does help.

It's great you were able to find a helpful medical article to guide you a bit. Basically anyone with advanced fibrosis/cirrhosis, usually caused by a chronic liver disease of some sort, has a much higher rick in developing HCC when compared to normal people. So this is why we have to be monitored on a yearly basis for any new liver lesions.

US is the preferred choice for imaging but CT or MR are sometimes used. I get a MRI done every 3 to 6 months depending on nervous my doctors are. Along with your US, they will typically sample your blood for tumor markers, AFP being the marker of significance for HCC. There are others as well like: CEA, CA19-9, etc.

You mentioned autoimmune along with your HCV. Do you have an overlap of AIH with your HCV? Or do you mean you have another extrahepatic disease or some sort? Have your doctors measured all of your liver function numbers? In particular, if you have: INR (PT/PTT), Albumin, Bilirubin and Creatinine - then it can help us understand what your current liver status is via the MELD and CHILD scores.

It does sound like you have a number of advanced liver disease signs like: spider angiomata, fetor hepaticus, etc. Also, the periodic dark urine may indicate some issues with impeded bile flow, either due to hepatic congestion or simply small stones or sludge. Are your platelets low and/or do you have an enlarged spleen? This would be an indication of portal hypertension.

Your US report will very likely help you out wrt whether you have cirrhosis or not, when combined along with the rest of you blood work. So take care and keep in touch, hopefully we can help out.
Helpful - 0
317787 tn?1473358451
COMMUNITY LEADER
Hi I am so very sorry, your symptoms do sound like you have advanced liver disease.
I was diagnosed after, we believe, I had it for 30 years. I had low platelets, the spider angiomas and these cherry red dots. I also had petichial hemorrhaging in my lower legs which 3 doctors told me was nothing to worry about.
So...just to be clear, your doctor has been testing you for hepatitis for years and it has always come back negative?
I had a test back in the mid 90's it came back negative.  We now know it was a false negative.
Also, my blood work did not indicate how sick my liver was.
I did not know until a biopsy was done.  Has your doctor suggested a biopsy? Or fiberscan?
I am so sorry
There is a great HCV support forum on here, with a social side and also a cirrhosis forum as well.
Take Care
Dee
Helpful - 0
317787 tn?1473358451
COMMUNITY LEADER
If I were you I would be a little upset that your doctor did not explain what the HCC testing was for but left it up to you to find out.  I guess it is possible he was hoping his suspicions were wrong.  I had a doctor do that to me.  He sent me to a surgeon knowing I would need surgery but he never mentioned it.
I get tested every year to check for liver cancer.  It is recommended for anyone with cirrhosis.
Are you seeing a liver specialist?  Again, really sorry.  I know how shocked I was and it took a while to wrap my brain around my new reality
Helpful - 0
317787 tn?1473358451
COMMUNITY LEADER
sorry for all the replies.  Here is our HCV forum
There are many many helpful , caring, knowledgeable people

http://www.medhelp.org/forums/Hepatitis-C/show/75
Helpful - 0
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