Don't know what to do

[kenneltech]

I was diagnosed with hep c about 3 years ago.  Had a biopsy and was told I was still in stage 1.  My genotype is 1A, which is the most resistant to treatment.  My doctor told me that I should come back in 5 years for another biopsy, and they will just keep checking my enzymes.  But I feel strange doing nothing, and have a friend at my church who was in stage 1, but was told to have a transplant before he got worse.  I have no symptoms besides being tired.  

Should I seek another opinion?  Seems to me I have a deadly disease raging through my body, and I'm supposed to not worry about it.  I was told I will probably die of something else before I die from hep c, but I read all the time about people getting liver cancer or cirrhosis (sp?).  Any suggestions?

[Trish77]

I hope you and your friend will both seek out other opinions. I doubt that he'd even get onto a liver transplant list simply because he has HCV Stage 1.   Anyway...you need to see a hepatologist if you can find one and start looking.  You are early stages, yes.   But checking your liver enzymes only is not a reliable test on how your liver is doing and is inaccurate in around 30% of the cases.  That's not good odds.  

You don't want to wait five years for another biopsy.  I would get one in maybe another two years.  If it were me, I wouldn't want to wait past that.  There is no rhyme or reason to how fast this disease progresses and while it may have progressed slowly in five years in some, it will have progressed so rapidly in others that treatment is no longer an option for you because the liver damage has progressed TOO far.  

Yes, 1a is the most resistant to treatment.   However, you will see many 1a people treating just the same.  It's our only option.  I'm 1a myself.  

I don't know how old you are.  To me, treating when you are younger makes more sense if your lifestyle and options can accommodate it.  As you get older, data seems to say that response to treatment is not as good.

Do you truly understand what your treatment options are, what treatment involves?   You need enough information to weigh out the pros and cons for yourself.

As for doing nothing....the something you can do is to maintain a healthy body weight, keep up regular exercise, eat a good diet and stop drinking alcohol - if you take the odd drink on a special occasion that's passable but giving up alcohol entirely is obviously best.  ( I will take a drink on a special occasion but extremely rare - and now not at all for the next 18 months as I'll be starting treatment Friday.)

Keep asking questions and really get to understand what you have and what it means for YOU.  And then decide when treatment fits for YOU.  

Some people choose not to treat and live with it for many many years, simply monitoring it.  Others, like me, choose to treat in early stages.  You and I are considered early stages as I'm also Stage 1 Grade 1.  As fare as I know, I've had this for 23+ years and I am where you're at.  However, at 47, I notice changes happening and I choose to treat now and not get any older or let this get any further along.  I can and want to do this now.

You will need to decide what is best for YOU...but understanding all your options clearly and being in the care of a GOOD hepatologist is important.  And you have time to do that, seeing as you are early stages.

I'm glad you dropped in.  Keep asking questions and I wish you good luck.

Trish

[Trish77]

I want to qualify what I said about treating when you're younger.  You ALSO have the option of waiting it out for better drugs when you are younger and at earlier stages of liver damage.  I just meant...you don't want to wait until you are TOO old...(like me at 47? :) but even that is an individual decision based on ones own circumstances.

Trish

[kenneltech]

Thank you for the response, but I know I'm old!!!!   Truly, I understand what you are saying.  It really helped a lot because you justified what I was thinking all along.  I never thought it sounded right to just ignore this whole disease and get a biopsy in 5 years, and that 30% statistic helped me make up my mind.  I did not know there were hepatologists (sp?).  I thought you went to a gastroenterologist, that's what I was told, so I'm going to find me another doctor!!

Fortunately, I have never drank, it makes me extremely sick, not just dizzy, SICK!  So I lucked out on that one.  I'm pretty healthy, except I'm tired all the time.  What are some of the symptoms you are having, if I might be so bold to ask?  Because I truly don't know what any symptoms are except yellow eyes.  BOY, DO I SOUND DUMB, I'm glad I found this site.

Thanks a bunch

kenneltech

[fretboard]

"I was told I will probably die of something else before I die from hep c", yes I was told the very same thing.  I was also told to wait another 5 years to take another liver biopsy but I didn't, I took another one around 21/2 years later.  I'm at stage 2 same genotype, I get the impression that most doctors wait until a person is at stage 3 before they show any concern.  That's just been what I've gathered from friends who have gone through treatment.  My wife has a friend at work who is going through treatment, she doesn't even know how she contracted HepC.  She was told that she was a stage 2 from her liver biopsy and a week or so before she started treatment she was told she was a stage 4, I guess that determination was made from other variables.  My point is look into the bigger picture.  Oh I also have another friend who went through treatment and when I told him I was gonna have another liver biopsy before the 5 yr. wait he told me he didn't think I could get another one.  I guess it's like the Bible says, "ask and you shall receive", just kidding.  good luck  

[patti1957]

lucky you - i was diagnosed with hep c - 2b - grade 3, stage 4 cirrhosis out of the blue at 50 years old.  i wish i would have found out sooner, i would have handled this infection before it put my liver thru the ringer.  i am waiting for ROCHE ( patient assistance ) for tx at this point.  they say i may beat the active infection but my liver damage will never reverse.  find out more and act - it's your body - if you feel strange about "doing nothing" than seek another opinion - it can't hurt - do it!

[jmjm530]

With minimal (stage 1) liver damage, you are lucky to have lots of reasonable options. One option is like your doctor suggests -- biopsy in another 5 years. No doubt your doctor suggested this waiting period because he knows that in most cases Hep C progresses very slowly and you're starting at stage 1. What your doctor suggests is commonly known as a "watch and wait" approach and it's the one I took myself until I was told I was told that I was between stage 3 and stage 4. I became infected at age 21 and treated around (too lazy to do the math) at age 58.

Personally -- and this has to be very general because I know very little about you or your history other than what is given -- my opinion is that someone with little or no liver damage -- especially a genotype 1 -- should wait for better treatments. Already there's a drug in trial -- Telaprevir -- that shows better response rates than current drugs, in half the time. Half the time means 24 weeks exposure to the tx drugs, instead of the standard 48. This may not seem like a big difference to someone who hasn't treated, but the drugs can really wear some of us out. Besides the year or so I lost treating, I lost another year recovering. Had I treated for a shorter period of time, I'm convinced I would have bounced back a lot sooner.

My suggestion is you take a day or two -- not an hour or two -- and back read the posts here. Also post the same question and spend some time at this site http://www.janis7hepc.com/  to educate yourself more what this is all about. Getting a half dozen opinions in one thread just isn't enough.

Also, the obvious has to be stated. Your choices are not simply to treat now or to wait five years and have another biopsy. An inbetween approach is very reasonable. A new device called "Fibroscan" is now in FDA trial and hopefull will be available soon. Fibroscan is like a non-evasive biopsy. With Fibroscan you could check your liver every year or so while you live a liver healthy lifestyle and keep an eye on the newer drugs. If Fibroscan doesn't come to market as planned, you could do another biopsy in 3 instead of 5 years if you wanted.

On a personal note, I ended up treating for 54 weeks and am now SVR (cured) for almost 2 years. In spite of that, had I to do it all over again, I still would have waited like I did. Treatment was very difficult for me. I lost a lot of time, friend, and work. And like many who have treated, I feel no better than before I treated, however I am grateful that my liver damage hopefully has stopped and possibly even regressed -- my sole reasons for treatment.

By all means get another professional opinion if you want. There are many doctors who will adovcate treating early just as there are doctors, like your own, who prefer a watch and wait approach. But in the end, it's your liver and your decision. Take your time and figure out what is really best for you.

Good luck!

-- Jim

[Susie2007]

My 2 cents.....Jim has given you excellent advice. While none of us knows what will happen to any individual, hep C is usually a very slowly progressive disease. It's kinda like a turtle on valium. If you take care of yourself....no alcohol, no smoking anything, and just make healthy lifestyle choices, it is not unreasonable to wait 3-5 years for another biopsy. By that time we should have some more drug combos that would increase your chances of treatment success. Only 20% of people go on to end stage liver disease whether they treat or not. The vast majority of patients do well, grow old and die from soemthing else. Also symptoms do not mean much in this disease. Some are very fatigued, achy and miserable and have little liver damage and others feel fine and have a lot of liver scarring.

Wishing you the best and remember treating hep C is never an emergency. You have time to weigh your options.