Starting tx w/o Liver Biopsy

[fuzzy1dar]

I was wondering if anyone has started tx without having a Liver biopsy and knowing what stage their  liver is in.

thanks, Darla

[Sarah1949]

I've had Hep C for around 40 years and have never had a biopsy. Never felt there was a good enough reason. I did have a Fibrosure blood test though, which indicated F4 or cirrhosis, just before requesting the pre-auth. My insurance was happy with it instead of a biopsy..

[AugustineMama]

Since I was diagnosed with. Cirrhosis I have never had another biopsy. My spleen is enlarged and platelets low. They say the risk is too high with someone with ESLD to have a biopsy

[AWorriedMom]

The latest thinking on biopsy is that it is no longer necessary as the treatments are easier and more successful. And, biopsy is not without some risk. However, some insurance companies are requiring it before approving meds which truly pisses me off as they are not doctors. Another option may be fibroscan. Speak to your doctor.

[dontworry_behappy1]

Very sorry for your loss.   Liver transplant is a very complicated process.  It's unfortunate that you wife died waiting for a transplant.  This seems to be the biggest fear by those while they wait.  The percentage of people who die while waiting for a liver transplant maybe a great deal higher that you may know.   There just isn't enough to go around and the need is high.

Be a organ donor and give the gift of life.  

[rdneck1]

I lost my wife to liver disease in 2010, when she was diagnosed with cirrhosis, she was at stage 1 and the doctor said she had to be at least stage 4 before they would operate since there were others ahead of her. We continued to go for ongoing tests, counseling, and so on, only to be sent back home to wait for the phone to ring as she was progressively going down hill.The Doctor kept stringing her a line telling us that she would soon be in for a transplant, but by the time she reached Stage 4 where the Doctor wanted her, all her other organs had failed.
Four weeks later she was dead.
I find it odd that if a person kills someone outside the hospital, it is called murder, but if the doctors do it, they are protected because they have a title that says they can and are also protected against any Mal practice, should you bring them before the Board of Physicians..

[fuzzy1dar]

Thanks everyone for the great info. I started tx about 5wks ago w/o a biopsy and was courious as to how many people if any did this. I'm genotype 2b and found out today that my VL is in normal range. WHOOYA! The only problem is my blood levels are very low. Hoping to get these up soon as I am very tired and weak. I was telling my son that the reason my VL is normal (which was 1,500,00 before tx) is because I don't have many blood cells left in me. lol
Good luck to you all!
Darla

[oyasin]

I tried to do that because the thought of 'taking out a piece of liver' scared me.

Anthem BCBS would not cover meds without a biopsy. (I'm 1b)

The biopsy was one of the easiest and pain free procedures I've ever had. I'd rather have 5 Bx's than another colonoscopy.

David

[pKinCA]

Hi,  

I started tx 3 weeks ago and did NOT have a liver biopsy.  I am Genotype 2b which is the easiest genotype to clear.  

I did have three tests though in this order:

1)  Ultrasound of liver -- mainly to check for presence of tumors (none)

2)  Fibrospect II -- "16" Index and 90% accuracy for F0-F1

3)  PillCam ESO -- swallowed a pill camera so doctor could see esophagus lining -- he wanted to make sure there were no varices (varicose veins that could burst which would not be good... usually seen after cirrhosis has developed I believe...)  I had none at all, and tissue was perfectly healthy.

After doing a lot of reading on biopsies, I decided there was still a lot of "gray area" with the results, as you are only testing one tiny area of the liver.  The Fibroscan is probably the better tool for determining extent of damage as it seems doctors probe many different areas.  If I lived near a Fibroscan machine I probably would have a scan.  I used to live in LA and once I feel better after treatment, I might go visit relatives and have a Fibroscan too!

Hope this helps some...  Do you not want to do a biopsy, is that why you ask?  Just curious...

pK

[FlGuy]

It is not uncommon for some doctors, with geno 2 and 3 patients, to forego biopsy.  The thinking is that if a person is committed to treatment, then what impact would biopsy results have, presuming that standard of care 24 weeks would be sufficient? I don't necessarily agree with that position since progress of treatment coupled with liver condition could have impact on treatment decisions later on, depending on early response to treatment.

[dlr2007]

Usually it's best to know what stage your liver is at. Many people who are only a Stage 1 or 2 choose to wait for newer meds (like me!). On the other hand, if your liver is Stage 3 or 4, you know not only is it probably time to treat, but you need to stick with it through all your might! If you know you're a Stage 1 and the side effects are getting awful and you're about to lose your job, well... maybe you'd stop treatment. But if you're a late Stage 3- you'd be better off to suffer through it if at all possible because you know you need to stop the Hep C from progressing.
  Interesting you should ask this question, because I've been considering trying to get my husband to tx without a bx (biopsy) first. Reason being is that they couldn't start an IV before his bx, and therefore wouldn't do it. There is a test called the Fibroscan, which is noninvasive and measures the stiffness of your liver- but it's not easy to get. Most docs don't have the machine and I think insurance often doesn't cover it. I may try to get my hubby one.
  There is a test called the FibroSpect II, but I found it to be very unreliable. It's supposed to be quite accurate at Stage 0-1 or 4 but not so great for the middle stages. I found it be be very misleading- my FibroSpect II score was 69- indicating Stage 3. My bx was a Stage 1!!! Big difference, huh :) ? Now there are some blood tests that will give you an idication of how your liver is doing. For instance, your platelets and albumin dropping can often mean that your liver damage is pregressing. And rising bilirubin can mean that also. My husband has low platelets and his albumin is getting on the low side too- so I'm betting he's in need of tx.
  Bottom line is- getting tx without getting a bx first is certainly better than doing nothing! If you can't get a bx or are too afraid to (it's no biggie, btw- ask for Versed first, it's way relaxing)- then you probably should just take what info you have and try to make an educated decision with an experienced hepatologist. I would say you'd be better off assuming your liver is in need of some help and tx'ing than assuming your liver is fine and not doing tx.
  Good luck whatever you decide!