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Avatar universal

Now have tumor

I've had Hep C since 1969 while in the military.  Fortunately I got it service connected as I got it from the blood transfusions I received after being shot.  I now live in the Philippines and am trying to get treatment that is the Sovaldi-Olysio treatment.  Tried the other 3 times without success over the years.  Yesterday I had a sonogram and they found a tumor on my liver, and had an Alfafeta Protein test done.  It was 2.26ng/ml.  I can't find the normal range for this test.  On the paper I got from the lab it says either 0-10 or 0-1.0.  It's unreadable and I live in a very small village and have to travel far for treatment.  To say the least, I'm worried of liver cancer as I've already been diagnosed with cirrosis, but fortunately don't drink and not serious yet.  Does anyone know the normal range for this test out there and what it means as the doctors here leave alot to be desired.

5 Responses
Avatar universal
Labs can vary somewhat in what they determine an acceptable range.  I'm also cirrhotic and receive routine six months surveillance with ultrasound and AFP.  My last AFP (Solstas lab) was 2.6 with the range between 0.0-8.0ng/mL.

Has your doc ordered a much more sensitive contrast CT to better define the liver mass?   Others on here with far more experience with HCC may respond soon.

I know hearing anything other than normal is troubling but sonogram results should always be verified with better tests.  I think with that very low AFP number it is premature, but understandable, to assume it is HCC without further testing.  

I had a main Pancreatic duct dilation on U/S some time ago that was disturbing and most often associate with pancreatic cancer but determined to be normal for me and my cirrhosis upon dual contrast CT.  

Best wishes and hope you're approved for Sol/Oly tx soon.
Marty



    
Avatar universal
I am gonna try to cut and paste this for you, hope it helps you,
What tests are available for measuring AFP?

Several assays (tests) for measuring AFP are available. Generally, normal levels of AFP are below 10 ng/ml. Moderate levels of AFP (even almost up to 500 ng/ml) can be seen in patients with chronic hepatitis. Moreover, many patients with various types of acute and chronic liver diseases without documentable liver cancer can have mild or even moderate elevations of AFP.


What is the sensitivity of AFP for diagnosing liver cancer?

The sensitivity of AFP for liver cancer is about 60%. In other words, an elevated AFP blood test is seen in about 60% of liver cancer patients. That leaves 40% of patients with liver cancer who have normal AFP levels. Therefore, a normal AFP does not exclude liver cancer. AFP levels are normal in a fibrolamellar carcinoma - a variant of hepatocellular carcinoma. Also, as noted above, an abnormal AFP does not mean that a patient has liver cancer. It is important to note, however, that patients with cirrhosis and an abnormal AFP, despite having no documentable liver cancer, still are at very high risk of developing liver cancer. Thus, any patient with cirrhosis and an elevated AFP, particularly with steadily rising blood levels, will either most likely develop liver cancer or actually already have an undiscovered liver cancer.
http://www.webmd.com/baby/alpha-fetoprotein-afp-in-blood
Avatar universal
goater and truredhead gave you good information.  I am also not an expert in this however, on my recent wellness exam (ironically, about 2 wks before I began my Meds) I had an elevated AFP also.  The 'Reference Range' shown on that test was "Less than 9.0". I went to my old standby, "Mosby's Manual od Diagnostic and Laboratoru Tests" (2nd Ed), and looked it up.  There, it showed that Normal (whatever that is : -) ) is below 40 ng/ml or below 40 mg/L (SI units).

Two things:  1). This book is old (2002) considering how fast medical research is changing information.
2). Every Lab (as Goater said) has its own ranges.

One last note:  Under ' Test Results and Clinical Significance' it showed
1.  Primarybheptocellular cancer (hepatoma).
2.  Germ cell or yolk sac cancer od th ovary.
3.  embryonal cell or germ cell tumor of the testes.
4.  Other cancers (e.g., stomach, colon, lung, breast, lymphoma).
5.  LIVER CELL NECROSIS (e.g.   CIRRHOSIS, HEPATITIS).

The caps are mine.  I am not trying to scare you - merely show that the elevated AFP could be related to your hepatitis and/ or cirrhosis.  

In any instance, keep a positive attitude and keep bugging them to get you to a hepatologist who has hepatitis, cirrhosis and liver cancer ecperience.  As I have learned from this Forum, see if you can get to a transplant center.  They have the most experience.  

Other will probably be giving you better advise as you have come to the right place - people on here have experienced all levels of liver disease.


Good Luck, good Health and hang in there.  We live in wondrous times for liver treatments of all kinds.  Pat
446474 tn?1446351282
Hi and welcome.

I read your story and thought I might be able to share my experience with hep C, cirrhosis, HCC and liver transplant.

As far as AFP. There is a lot of misunderstanding about AFP and HCC (liver cancer). First AFP is not predictive of HCC. As was mentioned 40% of HCC tumors do not give off any AFP which is why AFP alone is NEVER used alone to diagnose HCC. HCC Surveillance is done with ultrasound and AFP. Surveillance with ultrasound and HCC is only to look for anything they may appear to be possible HCC.They are not used to diagnose HCC. Then HCC is ALWAYS diagnosed with CT or MRI with and without contrast using a certain protocol for the abdominal imaging. Using contrast and the higher resolution of CT or MR makes visible the tell-tale characteristics of HCC (early arterial enhancement with early washout) which differentiate HCC from other types of liver lesions.

So the AFP level is not going to be of help in determining if this lesion if HCC or not. Hopefully not. The normal AFP range is about 10 or below depending on the lab but let me just mention that AFP can also rise due to inflammation. So some people with chronic hep C infection, which caused liver inflammation have higher than normal AFP levels sometimes up to 100 or so. If that is the case then is a AFP-L3 blood test that can tell the difference between cancer AFP and other causes of higher than normal AFP levels. I had the test for my cancer as I had AFP levels in the thousands which is usual for the small tumor I had. Mine tumor happened to be one that gave off unusually high levels of AFP. It all depends of the biology of the tumor. There are many more aspects about AFP I could go into but I since there is no rise your AFP then is not a marker should this be AFP.

As I said above you need to have a proper CT or MRI with and without contrast and have it read by a doctor who is experienced in the diagnosis of HCC. I reread your post and saw where you live. I am concerned about you getting a proper imaging scan done. Obviously Manila would have the best hospitals but I am hoping there is something closer. Let me know.

You didn't mention the size of the lesion found. Size is important because early diagnosis and treatment is important for the best outcome. A common issue is that a HCC tumor usually has to be between 1-2 cm in size to see the characteristics of HCC using CT or MRI. Usually closer to 2 cm. If it is HCC is will continue to grow. So if a lesion is too small to definitively diagnose one way or the other the doctors will wait a few months and then perform CT or MRI again. If it does not grow over say a year than it is assumed to be something benign and then surveillance can go back to 2x yearly. But if the lesion should grow then we can be pretty sure it is malignant and HCC can be usually be confirmed at that time.

If HCC is 2.0 cm or larger than a person can and should be listed for a  liver transplant. (HCC is not curable in the presence of cirrhosis in the vast majority of patients. Treatments are used only to keep the cancer within criteria while awaiting transplantation). People diagnosed with HCC 2.0 cm or larger receive "MELD score exception points" for having cancer and will continue to acquire additional points every 3 months until they are at the top of the waiting list and can receive a liver, the only cure for HCC.

I had HCC for 2 1/2 years before finally receiving my transplant 7 months ago for my cancer. I had 8 different cancer treatments over the years and was told last Fall I only had a few months to live because my cancer had become untreatable with conventional. Luckily I tried an experimental radiation treatment and survived to be here today.  

I am hoping you don't have HCC as life is much easier without it ;-) but I just want you to understand how serious HCC can be if not properly diagnosed and managed. We want to make 100% sure that this lesion is NOT HCC or if it is, we want you to get the best care possible for a good prognosis.

I was one of the 61 people in the trial that got approval for patients with hepatitis C and liver cancer to receive Sovaldi and Ribavirin while awaiting liver transplant. I treated with Sovaldi and Ribavirin for 48 weeks in 2012-2013. Unfortunately I relapsed after being undetectable for 47 weeks. So I still have hep C. I now have a plan with my hepatologist to begin treating it with Sovaldi, Oylsio and Ribavirin starting in August after I get rid of my Tuberculous which I have been treating since day one of my transplant. It's always something! But life has never been better and I am one of the luckiest people on the planet so it is all good. Better than good. As Tony the tiger used to say "GREAT!"

So let me know how you are doing and what the next steps will be. I will help you in any way I can. I live here in San Francisco and know all the folks in our transplant center, UCSF. They all work on me and I do a lot of volunteer work with the folks in our liver transplant department. So if you need any help if it is HCC (I am hoping this is a false alarm but scary none the less) I can get you connected up here. I assume you have VA healthcare issuance? I am not sure how that would work at UCSF but I could find out if needed.

Hopefully everything will turn out fine. Many times we imagine the worse. But it is good to be cautious and not ignore what might be an issue. But I want you to know if you need help I will help you so don't feel alone. Many of us have been there and made it through even when the worse did happen. Cancer is scary there is no two ways about it. But if I can survive a worse case scenario be assured you can too. Hope is always available even in the darkest hour so never lose your hope. Myself and many of my friends are living proof that there is hope and life can be better than ever.

Hang in there.
Hector  
  
Avatar universal
Hi im from Philippines also,just diagnose i have hepc last june 10, can u please give me an idea where to get viral load test here in manila?thank u so much.
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