cirrosis/cancer

[dscj]

i've seen some people on this site write about cirrosis, etc. how do you know when you have this or any other serious liver problem.   i guess what i'm trying to find out from you guys because my doctor really cant tell me is "how do you know how serious this is, with no obvious problems other than bloodwork thats off"? he doesnt want to do a biopsy, no pain, swelling. cant make the liver hurt no matter how hard he pushes on it.  i was diagosed 30 years ago, probably got it 32 years ago and have never manifested any symptoms. all these years i've been trying to get a doctor to point at it and say see there it is and its this bad. i've never gotten a satisfactory answer (if there is one). thanks for listening. good luck to all!

[JasmineT]

Wow, I am not the expert but this makes me nervous too.  You have had hep c for 30 years and he doesn't want to do a biopsy. Why not?  That is how I know the state of my liver.  He pushes on your liver to see if there is pain. I have always heard the liver cannot feel pain.  I am guessing this is a general practitioner?

You need to get in to see a hepatologist.  After 30 years you should know the state of your liver and so should your doctor so he can advise you.  A hepatologist specializes in the liver.

[James10500]

Get a liver biopsy.

[dscj]

i had a biopsy done 25 yrs ago and it was clean. i've had ultrasounds vevery year with a few mri's thrown in and the most they show is fatty areas around the liver. i asked about a biopsy this past year and his reasoning was that the upside of what we might find was not worth sticking a needle blindly into your liver. he is a hepotologist who does liver transplants at a major hospital in a major city. i trust him, i just want something tangible that i can wrap my hands around.

[lapis]

cant make the liver hurt no matter how hard he pushes on it

When the doctor "pushes" on the liver, he's actually palpating it to see if it is enlarged. (Hopefully he's not trying to cause pain : )  The liver lies up under the ribcage and is usually not palpable when it's healthy.  As liver damage increases, the liver enlarges and can be felt, or palpated, below the margin of the rib cage.  But then, when damage is most severe, the liver will shrink again due to the prevalence of scar tissue.

You say you are 55, have had HCV for 30 years, and have some "bloodwork that's off."  It's time to see another doctor, most especially if the doctor you're currently seeing is a general practitioner.  It would be best to see a hepatologist, a liver specialist, and you can find one at a large teaching hospital.  Next best, and a reasonable first stop (maybe more convenient), would be to see a gastroenterologist, especially if you can find one who has experience treating patients with HCV.

Push for a biopsy.  Bring those abnormal labs here and share with this group, people here can help you interpret them.  This disease has a way of sneaking up on people.  Do what it takes to get the information you need about your own liver's condition, and then you will know what step to take next.

Best wishes moving forward.
Lapis

[lapis]

Sorry I missed your next post.  I'm curious about why your doctor doesn't think you need a biopsy, especially after 25 years.  Maybe he gets enough info from the ultrasound and MRI?  I'd be interested to hear what others have to say about this.

Are you and your doctor discussing tx?  What is your genotype?

[candyce1953]

Biopsy absolutely
I have hep c for 41 years
Luckily still stage 2 because of no drinking and luck
But starting treatment this year

I have had 4 biopsys over the past 4 evades monitoring it

There are many people here with cirrhosis and have had hep c less time
Everyone is different
Get a biopsy and a new hepaologists please

[dscj]

i'm doing the 3 part treatment right now, iwas undetectable at 4 weeks, i'm going into week 8 now. anemia is toughest part (9.0) i'm on procrit now. this is the 4th time i've done a treatment since the early 90's. the last one actually worked up until the treatment was over, but it relapsed to previous condition. after all this i just wish it could be as clear as having a broken leg and being able to see the severity of it.

[Advocate1955]

From your previous posts, I think you are currently on triple therapy with Incivek, correct?  If that's the case, I'm assuming that you have Hep C, genotype 1, either a or b.  My guess is that if your liver is still compensated and you are currently doing triple therapy, your doctor doesn't feel there is a need for a biopsy right now.  It does seem strange that he didn't do one prior to starting you on triple therapy though, if you haven't had a biopsy in 25 years.  How were you diagnosed with Hep C 30 years ago?  I thought Hep C wasn't identified until about 20 - 22 years ago? (or am I mistaken?)
Advocate1955

[Bill1954]

Routine bloodwork can rule out frank cirrhosis; biochemical markers such as platelets, serum albumin, INR and other coagulopathy indicators will be off significantly if the liver is cirrhotic.

A blood test called Alpha-feto protein (AFP) can rule out roughly 2/3 of primary liver cancer (hepatacellular carcinoma); a U/S scan can usually rule out any tumors that the AFP misses.

The biopsy really differentiates between different stages of fibrosis; it can determine whether the patient has stage F-1 or stage F-3 scarring; if you’re intent is to undergo treatment regardless of stage and grade, then a case could be made to disregard needle biopsy. I imagine this is your doctor’s line of reasoning; while rare, complications to occur even with ultrasound guided procedures.

What genotype are you; historically the odds of successful treatment are relatively high with genotype 2 and 3, so many doctors opt to treat w/o needle biopsy in that patient cohort.

On the other hand, pathology report might make an otherwise reluctant patient more determined and perhaps more compliant if they feel ‘under-the-gun’ to get their disease behind them.

Good luck with your decision-

--Bill

[James10500]

If you want to know the condition of your liver today get a biopsy.  A biopsy done 25 years ago tells nothing about the condition of your liver now.

[eureka254]

Since a biopsy is an invasive procedure, it would be important to discuss with your hepatologist his rationale for not wanting to do a biopsy on you, if perhaps specifically you have contra-indications.  From what you stated it would seem that your doctor has good qualifications, but indeed being that you have had long-time infection and have not been staged in over two decades is serious consideration.

However, depending on what is 'abnormal' in your bloodwork, your doctor may be making recommendations appropriate for the testing or not because you are intending to do treatment; some doctors do not feel it necessary to biopsy if a patient intends to do treatment.  The fact that your ultrasounds and MRIs are consistently worry-free means that there is no concern for cancer, so that's a good thing.

As lapis says, your doctor's physical exams should be not to see if you feel pain, but to see if your doctor *feels* signs of cirrhosis.  When liver disease gets to cirrhosis, there are usually symptoms (swelling, fluid retention, specific abnormal blood parameters, etc.) to indicate such; however, I understand your caution and concern as that is not always the case; though infrequently, cirrhosis can manifest in the absence of any symptoms as well.  

The fact that you do trust your physician and he has been monitoring you, or so it seems for some years now, it would be important to have a detailed discussion about the pros and cons of biopsy -- my vote would be that if you are not successful in this round of treatment, then perhaps it would be time to press your doctor to do one.  Hopefully your liver is such that you have no damage -- if you are successful in treatment this round, it will no longer be a worry for you! :)  Best of luck. ~eureka

[dscj]

thanks so much for all of your help. i can tell now that a big pqart of my problem is not asking my doctor about all of these issues (i have no idea what my genotype is or for that matter what a genotype is). i wont change anytging mid treatment but after i'm done (successfully) the air will be cleared by him or somebody else.

[Bill1954]

The hardest part about all this is learning to ask the correct questions; once you get to that point the answers generally come rather easily. Well, most of them, anyway :o).

HCV genotype is the strain of virus. Genotype 1 has traditionally been the most difficult to resolve, requiring two to three times treatment duration and perhaps multiple attempts. Genotype 2 and 3 responded more readily to therapy; 70-80% of patients treated successfully with only 24 weeks therapy.

New drugs are changing the face of HCV management, never before were so many therapeutic options available to our community.

Keep reading and asking questions, this will all make sense as you go forward.

Best of luck-

--Bill

[HectorSF]

Everyone has given you good advice here. The main issue appear to have been a failure to communicate with your doctor. Your doctor knows if you have cirrhosis or not. You just need to ask him. Either you have it or you don't. There is nothing vague or mysterious about it. You don't always need a biopsy to know if you are cirrhotic or not plus as others have said you decided to treat so cure of hep C is the focus whether you had cirrhosis or not. Curing the virus will give you a better future whether you have cirrhosis or not.
Possible indications of early cirrhosis are:
* Platelet count below 100,000
* AST higher in relation to ALT
* Hardening and shrinking of the liver
* Enlarged spleen
* Portal hypertension
If you want to know ask your hepatologist. He will know if you have cirrhosis.

As far as blood levels, it all depends on what blood levels are off? Are you talking about before or after starting treatment?

As others have said your doctor was not feeling to see if your liver hurt when he palpitated it. He probably also checked your spleen on the left side. This is all standard for diagnosis of liver disease. And you need to ask what he is doing, why and what his conclusion is. If you don’t understand his explanation ask again. Remember you are paying for his services. You are not a passive bystander this is your health you are dealing with and you have a right to understand it.

A biopsy 25 years ago is of no use. It has to be recent. But your doctor has already figured out that you don’t have advance liver disease otherwise he wouldn’t be treating you. First you must have cirrhosis to have an increased risk of liver cancer. Secondly it would have been seen by the MRIs and ultrasounds you’ve had. So this is not an issue you need to think about.

You are genotype 1, as only genotype 1s can be treated with triple therapy.

You are successfully responding to treatment so you should concentrate on your treatment for the 24 weeks. Liver disease is tangible otherwise your hepatologist would not have started treatment. So he has already concluded that your liver disease isn't too advanced for treatment and you don't have liver cancer because you would be dealing with the cancer, put on a transplant list and many other things. So no need to distract yourself with issues that your doctor already accessed before starting treatment.

The good news is as a previous treatment relapser you are on your way to curing yourself of hepatitis C and will be able to live the rest of your life without being concerned about it any longer.

Good luck with your treatment.
Hector