knowledge

[djbn13]

I e-mailed my doc about the sonogram instead of biopsy and this is what he wrote back.  My primary doc sent me to a liver specialist 2 tears ago and he said there was nothing to worry about go enjoy your life.  If I knew about this site two years ago I would of been more informed and asked to be checked for hepc, maybe I would of been done with tx by now and free instead of playing the waiting game now.

Knowledge is power.


ANDERS HAKAN NYBERG MDReceived:
6/3/10 6:09 PMHi - the cat scan of the chest 2008 noted subtle nodularity of the liver which may reflect cirrhosis. A sonogram is a non invasive procedure, if it also notes a nodular liver you likely have cirrhosis. A liver biopsy is invasive, it comes with a risk of a complication, it does not have to show cirrhosis even if you have it and the information will not change the management.

[HectorSF]

Hi.

I am so sorry to hear about your diagnosis. Hang in there. You are not alone!

Here are my comments on your doctor's note...hope they are not too rambling...

"A liver biopsy is invasive, it comes with a risk of a complication"
This is true. There is always a risk with any invasive procedure. This is particularly true if you have blood clotting problems caused by cirrhosis.

"it does not have to show cirrhosis even if you have it"
It is possible that the biopsy samples could miss the scarred parts of the liver. This is called a sampling error. That the scan indicated nodularity of the liver is a hallmark sign of cirrhosis.

"the information will not change the management."
Apparently the doctor who wrote this believes that there is no question that you suffer from cirrhosis. So there must be other ways that your body is indicating that you have advanced liver disease.

Please take note of Bill's excellent advice regarding lab work. Bill is always an excellent resource here for all aspects of HCV.

If the doctor and radiologist could see your liver in the scan they probably also could see your spleen. If you have an enlarged spleen it is another sign that you have cirrhosis. Enlarge spleen can also be detected by your doctor by feeling under your left rib cage. If you have an enlarged spleen you will have a lower than normal platelet count and portal hypertension. Cirrhosis effects many of your body's systems not just your liver.

Have you have any signs of or has your doctor mentioned Ascites, edema, varices (you need an endoscopy to diagnosis this), portal hypertension?

Yes, this is something that can make you angry and upset. That is was missed previously.(%$#) A similar thing happened to me.

There are a number of others on this forum that also have cirrhosis so this is a good place to share information and ideas.

Learning about cirrhosis is a major undertaking. So please ask any questions you have and we will try to help in whatever way we can.

Remember cirrhosis, stage 4 has a wide range within it. You can have cirrhosis for many years and live a normal life. In the early stage of cirrhosis you can still treat for HCV although you chances of SRV are generally are lower than others with HCV currently. You may want to wait until next year when the new meds come to market with improve rates of SRV for for people with cirrhosis. Or you could treat now and see how you respond to treatment.

My 1st recommendation is to find a Gastroenterologist or Hepatologist who is EXPERIENCED treating patients with cirrhosis. You do not want anyone missing anything from now on. You may want to find a doctor at a liver transplant center. They work with patients on a daily basis with cirrhosis and they can get you on a transplant list should you need it. It is good to start building a relationship with people at a transplant center as soon as possible so they know you and will assist you in getting on a list. I will be going through the 1st phase of getting on a list myself in 3 weeks.

How does your doctor recommend you manage your illness at this point? Lab test, meds, etc.
Here are some things your doctor should do to manage your illness:
Have you had Hep A and B shots yet?
You will need to be scanned for liver cancer (HCC) twice a year for the rest of your life (assuming you don't have a transplant) as cirrhotics have an increased change of liver cancer.

Remember you want to be gentle on your liver. No alcohol. Only Tylenol for pain, up to 2 gm per day. Tell you liver doctor if you have any operations. Anesthesia and cirrhosis are a bad mix.

All the best. Keep posting.
Hectorsf

[22hamilton]

I find it bewildering that two years ago you were obviously suffering liver damage yet you were told by a 'liver specialist' to relax and get on with your life ? Phew I would be insane with rage if I were you.Its worrying when you come across this sort of cavalier attitude. At least you now have more knowledge and power.

Good Luck

[Bill1954]

Dj, routine lab results can be telling in the presence of cirrhosis too. Often a diagnosis of cirrhosis can be made without biopsy; a biopsy sample can determine between stage 1 and 3, for instance, which is very useful for determining the urgency of therapy. Borderline cirrhosis might not be reflected in these routine labs, however.

Do you have copies of a recent CBC and comprehensive metabolic panel? Frank cirrhosis would be characterized by low platelets, high bilirubin, low protein synthesis, etc. If you have results available, you might try posting them and get some input. Of course, your doctor should review these and advise as well.

Good luck—

Bill

[GSDgirl]

I would get a good referral and then interview the doc, you might go through 10 from a google list but then you might get lucky.  You got a not so good referral from your doc.

I also had an ultrasound & not a biopsy but if you are geno 1 I think biopsy is the norm.  Denise

[Diane12855]

Somebody posted a youtube video on here about hep c. There is something on there about not having people with cirrhosis get a biopsy, so that part may be correct. Is this the same doctor that read your cat scan in 2008 and didn't have you treat? If so, I would find another doctor as this one doesn't seem to have your best interest at heart

I found my hepatologist on Google. If you live in an area where there aren't any hepatologists, look for gastrointerologists who have lots of hep C patients. This disease is too serious to not have the best doctor you can find.

[nygirl7]

The biopsy will tell you how far along your liver damage is.  Most all of us have had one. it is a key determining factor on whether or not one needs to do treatment right away or not.  Of course if an ultrasound shows tumors or cancer or cirrhosis that is a whole different ball game. That is why we do both tests as they are completely different things really.

Biopsy is not as painful as it sounds - it really is like getting a big needle sort of.