Very concerned about HCC possibility

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myjsusnsk
New Member


Date Joined Jul 2009
Total Posts : 2
   Posted 7/2/2009 12:06 PM (GMT -7)   
Hi, I'm new to the board.

I'm a 48 year old male.
I have a history of alcohol abuse and wouldn't be surprised if my liver were cirrhotic.
I have lichen planus on my right wrist and forearm that was diagnosed in early '07.
In August of 2008, two odd patches of hair seemed to fall out literally overnight (though I never saw the hair itself).

History:

July/August 2008
Saw physician complaining of left upper quadrant 'pain' and various other symptoms (including the alopecia). I was worried about pancreas.
8/29/08 - CT: liver normal size, configuration, attenuation pattern without bilary distortion
pancreas normal size, configuration, attenuation pattern
Other normal comments

May 2009
Went to ER complaining of feeling lightheaded for about 6 days + left upper quadrant 'pain'
I believe they were concerned about heart related issues
5/11/09 - EKG - normal
5/11/09 - Brain CT Scan - normal
5/11/09 - Chest X-Ray - reportedly normal but I never saw the actual report
5/11/09 - Blood work: AST 17, ALT 59, AMYLASE 35, Creatine 1.1, Billirubin negligible (I've never seen INR or AFP)

I find it odd that nothing was observed/mentioned on the CT scan including cirrhosis.

I've been seeing a dermatologist about my alopecia and lichen planus since last year about that same time frame. While the lichen planus has not resolved, it has improved. Still, I believe he thinks it should be 'treated' by now. The hair on my head has somewhat returned although its thin and white which is contrast with my normal hair. I believe he suspects hepB or C due to the lichen planus. My primary care physician never really said much about the lichen planus it at all. He seemed to focus more on Metabolic syndrome issues like A1C, Cholesterol, Blood pressure which were/are, in fact, issues.

Finally, in late May/2009, my mid-back started to bother me. It felt 'tight' and I was always feeling a 'clenching' sensation.

More recently, but after my 5/11/2009 ER visit where I mentioned the left upper quadrant sensations, a more troubling symptom has appeared which is why I'm here to begin with: right upper quadrant (RUQ) pain.

The RUQ pain started maybe three weeks ago. It started as kind of a 'strained' spot in that part of my abdomen under my ribcage and where I would think the liver and, perhaps, gallbladder areas are. I didn't feel it all the time. But when I moved certain ways I could feel it again. Certainly it hasn't gone away. This week it has been more of a constant sensation.

Needless to say, I've been googling and reading, and reading, and reading. And what I'm reading is scaring the bejeezus out of me.

My fear, of course, is HCC.

I called this morning to see if I could get in to see my primacy care physician today. The answer was I can see a physician's assistant on Monday morning. The PA is probably good enough; I know him and I'm sure he'll order the tests I think I need. The wait will be hard though...

I'm not exactly sure why I'm posting this. Maybe it's to get it off my chest because I'm not ready to open up about it at home. Not that my family doesn't know the past history and my concerns--but they haven't heard _this_ concern yet because its pretty recent and I've always felt a little like I sounded 'false' alarms when I'd believed cancer and had results come back 'normal' or something else. So rather than put my family thru undue concern, I'd prefer to get farther into it first.

I do have a question that someone may be able to answer. Does HCC develop this fast? It's been 10 months since the 'normal' CT scan, and about a month and a half since having 'normal' ER blood, urine, X-ray results. I know none of those answers/measures are definitive, but shouldn't there have been 'some' red flag that wasn't just me talking about a pain (although, again, I didn't describe RUQ pain)?

Any comments would be appreciated.

Thanks

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/2/2009 1:54 PM (GMT -7)   

myjsusnsk, my advice would be to stop Googling and reading until you get a firm diagnosis.  We encourage new members who have been recently diagnosed with liver disease (or whose loved ones have) to learn as much as possible.  However, it is dangerous to try to diagnose yourself and, as you admitted, you are scaring yourself.

I have never heard of there being a connection between lichen planus and any type of hepatitis.  So I don't know where you got that idea.

HCC is usually caused by untreated hepatitis C or a cirrhotic liver that develops cancer.  I'm sure there are some cases where the etiology is unknown, but usually it is part of a disease process.  I had HCC, diagnosed in 2005.  I was having ultrasounds every year.  The previous year showed no tumor, but in 2005, the tumor was 11.5 cm x 12 cm--huge.  I really believe that it was overlooked the previous year.  However, I can also tell you that I had no pain prior to diagnosis.  Had I not had that ultrasound, I would not have known I had cancer.

Cirrhosis is usually determined by a biopsy.  If you are still drinking, I would strongly urge you to stop.  That is the best thing you can do for your liver.

Perhaps you can ask for another CT scan or an MRI with Gadolinium for a definitive diagnosis.  And I think you are making the right decision not to mention your fears to your family until you know one way or the other what is going on.

Good luck!


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


myjsusnsk
New Member


Date Joined Jul 2009
Total Posts : 2
   Posted 7/2/2009 5:05 PM (GMT -7)   
Thanks for the comments and advice Connie (read your name in different threads).

Although I totally understand your comments regarding Googling, I probably have a different view on the Googling part from the perspective that by reading this stuff, it scares me enough to act. And, for me, it's the acting part that is important. Getting worked up does suck however.

Regarding the lichen planus: when it was first diagnosed in early '07 that dermatologist really didn't give me any kind of sense of what it was all about. I got more of a 'we don't know what causes it' and 'its not something to be concerned about' (other than its cosmetic issue). In the latter part of '08, with a different dermatologist (to work on the alopecia and the lichen planus), in a second appointment he tossed out the 'you need to get a blood test for hep.' That surprised me, but he said it was 'standard procedure.' And, stupidly, I still haven't followed up on it. It will be followed up on shortly. To find articles suggesting a connection, you have to search a bit harder than just looking for lichen planus, for example. Initially, I never saw anything suggesting a correlation, but it is out there when I looked harder the second time. And, at this point, a connection between it and an underlying liver condition actually makes some sense to me when you consider all my symptoms.

I'm afraid of both having hepatitis C and a cirrhotic liver mostly due to their connection with alcohol abuse. And the new RUQ 'pain' is troubling. It's interesting that you mention your suspicion that your tumor was overlooked. Before I found this site last night, I was thinking the same thing about me. A few days ago I was saying to myself (to calm myself down), 'but you just had an abdominal CT scan late last year, how....' But when I dug the report back out, it notes my complaint and its finding. But it also says: CT Abdomen without Contrast. What bothers me is that I swallowed what I believe was a barium sulfate shake after fasting before heading for the scan. I thought that _was_ contrast. So it bothers me a lot the way this report is titled. And, of course, the current pain in that area after about 10 months bothers me too--regardless.

I have stopped drinking. And I've resolved that if by some miracle I get through this that I'm done done. I'm familiar with the dynamic of 'relaxing' when I find out things aren't so bad. However, no matter what, I know that drinking will simply kill me--one way or another, period. And, at this point, I can only hope that I 'quit' soon enough to make a difference.

I certainly expect to ask for a CT scan or Doppler ultrasound. I hadn't considered the MRI with Gadolinium. I also want to see the INR, GGT, AFP, and Hep B/C results as well.

I hope, whatever is going on, that its survivable.

Oh, and I wanted to add that after reading many of your posts in other threads, you're a true inspiration.

Thanks,
Rick

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/2/2009 5:45 PM (GMT -7)   

Thanks, Rick.  Regarding the LP, I've never heard of a connection between that and hep C.  Doesn't mean one doesn't exist...I've just never heard or read of it.  My Mosby's Cyclopedic Medical Dictionary says that lichen plantus is thought to be caused by stress and that there might be a genetic component.  It also says it is treatable, though it does take some time to get rid of it.

When I first had an MRI with Gadolinium, I was told that if cancer was anywhere in my body, it would "light up like a Christmas tree."  Now that I am 2 years cancer free, they usually do CT scans with both an oral and an IV contrast.  I believe the IV contrast they use is specifically to look for cancer...and, of course, that is why they are doing the test.

In your case, certainly you should ask for tests for hep B and C, if you are concerned.  Hep C has absolutely nothing to do with drinking...except that alcohol is the worst thing you can do, but it is a blood-borne disease which is usually contracted via transfusions prior to '92 or the sharing of needles during drug use.  Hep B can be contracted through close association to someone who has it, including through saliva.  If these tests are negative, then you can rule out those diseases.  However, you might want to find a GI doc who will do a biopsy to determine if you have cirrhosis.

I had been sober for 6 yrs. when I was diagnosed with hep C.  However, had I still been drinking, I don't think I would have lived very long.

Let us know what you find out, and again good luck to you.

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

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