Strange route to cirrhosis diagnosis

[fntn]

Hi, I'm a new member.

Recently I went to the doctor with random dull ache in the RUQ and was a little more tired the usual (very physically active). Had gained a little extra weight as well that I didn't expect. Also told the doctor that I have socially drank for many years usually having more than the recommended two drinks. He checked me over and had a CMP and urine analysis done. Everything looked good except for my ALP being elevated. He concluded that everything seems normal but did have an US done. Again everything looked good but picked up a small amount of ascites (found the extra weight) as well as a possible mass on the liver. So, now I meet with a GI doctor and a CBC was then run which also showed normal results. Next was a MRI to look at the mass and they found it to be an indeterminate 5 cm focal lesion.

So we then waited 3 months. A tumor marker test was done to look at AFP (very low, 0.6), and the followup MRI completed. It stated that the liver appeared normal with no fatty infiltration and the left lobe showed heterogeneous enhancement with a very small cyst. The tumor was stable and appeared to be a neoplastic process suggesting cholangiocarcinoma and so a needle biopsy was immediately ordered (lots of fun with it on top of the liver). But strangely as well, the MRI shows the spleen as slightly enlarged 16 cm ... this was never mentioned before.

The biopsy came back negative but then I was told that I had cirrhosis. A endoscopy exam was done but nothing was found at all. No hints of any varices.

My question is how valid is this diagnosis? I'm meeting with a hepotologist soon and can't understand how they are so sure about this. The GI said the ascites with the slightly enlarged spleen indicates portal hypertension. I suppose my drinking history may sway things as well.

Relevant numbers are:
alt,ast,alp ... 14, 23, 178
bili,alb,afp ... 0.8, 4.2, 0.6
plt, rbc,hgb ... 239, 4.63, 13.9
cre,bun,gfr ... 0.71, 10, 116
PT,INR ... 10.9, 1.0

Any insights would be greatly appreciated. I've seen many of the other posts and there seems to be many knowledgeable people here. Thanks.

[fntn]

Thanks Advocate1955.  
Will keep info coming. Great people here on the site. Hope everyone has a great new year coming up.

[Advocate1955]

I'm not an expert on liver tumors, by any means, but I'm glad to hear that your hepatologist is moving quickly on referring you and getting more testing and evaluation done.
Hopefully Hector or Randy will chime back in on this thread because they both have a lot more knowledge about liver cancer, especially Hector since he has experienced it first hand.
Best wishes to you, and keep us posted.
Advocate1955

[fntn]

Well, I finally met with the hepatologist today. He wasn't concerned with the cirrhosis diagnosis at all really. Said it was possible due to the presence of ascites and the history of drinking.

He was far more concerned with the MRI results of the tumor that also showed an enlarged spleen along with the isolated serum ALP levels. He was worried that the tumor was already infiltrating the vascular system and disturbing the bile flow. He thought that the data did indicate intrahepatic cholangiocarcinoma and the 5 cm tumor size means things need to move much faster. He immediately refer me to a multi-disciplinary team for further testing and evaluation. This doesn't sound like much fun but I guess I don't need to be worried about cirrhosis at this point.

Like you, being blessed by the cancer fairy twice not only seems highly improbable but not very fair either.

Anyway, here are the latest numbers. ALP remains elevated but ALT moved up too. I know that numbers this small probably don't mean much but might the increase in ALT indicate the tumor chewing on the liver a bit ??

alt,ast,alp ... 35 (was 14), 20, 166
bili,alb,     ... 0.7, 4.8,
plt, rbc,hgb ... 257, 4.8, 13.6
cre,bun,gfr ... 0.78, 12, 105

Thanks

[HectorSF]

People with cirrhosis should be vaccinated against hepatitis A and B. Pneumococcal vaccine and yearly influenza vaccine are also recommended. Ask your hepatologist.

We ALL think it can't happen to me...
Us: "Who me???"
Us: "Na, you can't mean me".
Doctor: Well there is nobody but you and me here so...
until it does.

As you know that shock when you hear your doctor say "I'm afraid you have cancer". I have heard that twice. I will never forget either time. And I also heard "I'm afraid if you don't get a transplant soon, you don't have much longer to live". That was about two months ago. Luckily I DID get a transplant. That was way to close to the EXIT door for me.

I would be happy if I never heard that word and all that it means ever again.

Keep winning over cancer!
Hector

[fntn]

"Have you every been tested for hepatitis? Hemochromatosis?" ... no and I probably should think about vaccinations as well.

The endoscopic exam and biopsy were already done and showed no problems or issues. Wasn't too bad either considering they sedate you.  The tumor biopsy wasn't quite as much fun though. Had to use the CT since the US couldn't seem to get past the rib bones I guess for a proper targeting image. As you guessed, both the renal cell and cholangio carcinoma possibilities got my undivided attention. The cirrhosis added to the pleasure.

My PCP is a very good doctor but he seems perplexed with this as well given the data. Should prove to be an interesting meeting with the hepatologist.

Either way it goes, no more drinks for me - cut that off immediately 5 months ago. I fell victim to the "can't happen to me" syndrome, silly boy.

Thanks again. Will let you know how things go.

[fntn]

Thanks for the input. Yes, my gut instinct isn't very good with this GI and he actually referred me to the hepatologist. Still didn't say what the tumor was after the biopsy, just that it isn't malignant. My PCP thinks everything looks fine but encouraged me to see the hepatologist as well. Will have new CMP numbers done just before I see him in a couple of weeks.

I forgot to mention that I previously had kidney cancer several years ago. No metastasis back then. Suppose this is the reason for the extra push to do something as invasive as a needle biopsy. Never heard of ICC before but (I quickly reviewed the possible prognosis) decided to go ahead with the biopsy even though they should have been able to determine what it was by MRI. It's on the top/rear/outer portion of the liver which apparently makes it hard to diagnosis. I sure hope the biopsy samples were taken in the right spots and didn't miss any active cancer cells. Their thinking seems to be that since it would be affecting the small bile ducts inside the liver, the functions wouldn't show much impairment but maybe indicated by the ALP elevation.

Regarding the MRI imaging of the liver, wouldn't cirrhosis be more obvious?  My PCP seems to think it shows that I've "roughed it up a little over the years" but nothing more (heterogeneous enhancement). Also, why only noted for the left lobe and not the right? They noted no fatty infiltration as well. I know very little about alcoholic cirrhosis but wouldn't there be some residual fat left during the scarring process?

Does portal hypertension always lead to varices? They were quite insistent on me having the endoscopy done.

Sorry for all the questions. I'm as puzzled as my GI seems to be. Will update with new info after the appointment.

BTW, good luck with your new healthy liver! Great way to start the new year.

[HectorSF]

I am very happy you are going to be seeing a hepatologist. They will get to the bottom of these issues. There are some discrepancies between what was found and the conclusions.

A platelet count of  239 in a cirrhotic with any portal hypertension is strange. Usually the platelet count will at most be less than 150 and many times 100 or less. The hepatologist will investigate this.

"A tumor marker test was done to look at AFP (very low, 0.6), and the followup MRI completed. .... The tumor was stable and appeared to be a neoplastic process suggesting cholangiocarcinoma and so a needle biopsy was immediately ordered.
The biopsy came back negative but then I was told that I had cirrhosis."

Cholangiocarcinoma is a cancerous growth in one of the ducts that carries bile from the liver to the small intestine and can be fatal if misdiagnosed. The hepatologist will confirm this.

The other thing I find strange is why they couldn't diagnose a "5 cm focal lesion". Any lesion or mass larger than 2 cm normally can be diagnosed using either a proper MRI or CT scan using a phased process and contrast. Biopsy is only a last resort for diagnosing masses in the liver. Maybe there was no other way to diagnose it but it makes me wonder what the doctors knowledge, skill and experience diagnosing liver lesions.

AFP is used in combination with ultrasound to look for HCC (primary liver cancer which usually develops in someone with cirrhosis). It is not used to diagnose Cholangiocarcinoma.  

I am glad you will be seeing a hepatologist. They will make an assessment that you can be sure of and will recommend and changes you will need to manage your liver disease.

Best of luck to you!
Let us know what you find out.
Hector

[nan535]

Given your diagnosis of cirrhosis, i was surprised to see most of your  numbers in the normal range.  I'm not a doctor but I wish my husband's numbers looked as good as yours do and he is post transplant.

If I were you, I would definitely get a second opinion with a good hepatologist.
You need to know exactly where you stand and why.

All the best,
Nan

[rexx73]

sorry iam not as knowledgeable as randy or hector,but i guess they will soon come along for giving you some inputs.

in the meantime you can try to post your question in the expert/liver transplant forum were dr schiano gives good advices.

http://www.medhelp.org/forums/Liver-Transplant/show/274

or maybe in the Pathology: Diagnostic forum

http://www.medhelp.org/forums/Pathology-Diagnostic/show/1693

good luck