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Avatar universal

Frequency of liver biopsy in Hep C pt?

I was wondering if any of you know of the general concensus of the frequency of liver biopsy in Hep C?  I had thought in the past (unless you live near a place with a fibroscan machine), that the rule of thumb was every 3-5 yrs. Not that I like or enjoy liver biopsies, I hate them. But, out of my 5 biopsies I've had in the 30 something years that I've had this, 2 of them showed bridging fibrosis.  The biopsy I had in 2010 didn't show any bridging.  Has the school of thought changed?  Ever there any papers on this?  The nearest fibroscan machine is 3+ hours away from me at a teaching hospital and w/o being in a trial or anything, the cost of getting this is not covered by my insurance plan. I'm just wanting to know, if it's acceptable to just be followed with (now they've even changed me from every 6 mon. to once a year) ultrasounds and then, labwork.  It almost feels like to me, this medicare HMO is too worried about cutting costs instead of trying to be practicing good, safe, medicine.  Maybe I'm overreacting. Please give me any sound information you have heard from your doctors or medical papers.  Not just feelings.  I can go on my own, 'feelings'.  I do appreciate all of you nice people and that fact that you care, but right now, I'm looking for something solid that I can use to discuss this with my doctor when I see him in March.  I also email an expert (don't want to say which one), to see what his opinion is.  I'm just not sure that an ultrasound can pick up what stage you are in or if there is any advancing fibrosis such as bridging occuring. Seems to me that a once a year ultrasound, only would pickup cirrhosis or tumors, not the in between stages.  Maybe I'm wrong as I am not a medical person.
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Avatar universal
Thanks, it helps a little bit.  Don't know if I'll ever completely trust doctors, but at least I'm not as worried about the Hep C.  Susan400
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Avatar universal
Susan, I think I can help a little bit with some of your questions. The IL28b test is not important unless you are taking interferon. You and I are very resistant to interferon as evidenced by our continued failure to respond. I am a tt and I would bet that you are as well. That test is not needed when using the all oral treatments.

I think the other test you are talking about is the Q80K. It is for genotype 1a's and shows whether you would be resistant to Olysio. . You will not respond as well as someone without that polymorphism.  It doesn't show you if you are resistant from using the medication. Once you have it, you have it. I also think it is about 50% of geno 1a's who have it. I'm not sure if it affects all the NS3/4A protease inhibitors or just Olysio. Your doc should be able to answer that question for you.

I can understand your fears about something being missed especially because of what happened to your dad. I am so sorry he and your family had to go through that. I know it is standard of care for those with cirrhosis to have ultrasounds every 6 months to a year, along with AFP. It is to monitor for liver cancer. It is not a good way to monitor progression. It is unusual for someone without cirrhosis to develop HCC. I hope you can eventually put that fear behind you.

As for the upper endocscopy, that too is a test for cirrhotic patients. People without portal hypertension that comes from severe scarring in the liver, do not develop varices.

I hope this helped you a little bit.
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Avatar universal
I had one endoscopy/colonscopy in the same day, back in 2008 and it was the esophagus was normal.  This was my baseline.  Haven't had another one. The only abnormality was a hiatal hernia. I don't know why he changed the sono's to every year instead of every 6 mon., except for saving the HMO money. My liver always shows alot of inflammation on it, but no cirrhosis ever mentioned.  I know sono's are easy because I've been getting them since around 1999.  I think that the reason why I get paranoid about doctors missing something is because my Dad had his first bout with cancer when he was my age. The cancer was found 'by accident', he had no symptoms prior to that first bout.  Then, in the spring of 2013, he had been starting his downhill slope. The doctors kept sending him to this specialist and that specialist and all of them were running different tests and the internal medicine doctor was incompetent and didn't put the pieces together. They totally misdiagnosed my Dad and were treated him for dementia. When he ended up in the ER, because my mom and I couldn't control him.., they found cancer all of his body. The reason why his brain was not functioning right was because the cancer was in his bones and it was leeching calcium into his blood.  When calcium gets too high in your body, it causes hypercalciumia and that mimics dementia symptoms. My Dad passed away in Oct. 2013 from metastatic cancer.  I am just always, in the back of my mind(probably w/o any real reason), thinking 'what if my doctors miss something?'  ..., so yea, I'm a little untrusting of doctors when it appears that they are changing things to where it seems like they are trying to save a buck.  I want to insist on keeping the sono's at every 6 mon., if they are not going to do a biopsy and I can't get the fibroscan because it's too far away. Do you think that's too much to ask?  I don't.  The ultrasounds aren't that expensive. I also think that there is a certain blood test (don't remember the name of it.., it's Q something or other, seems like), that they can run, to check for resistance, variants, etc. I've never had that test and I feel like it would be helpful to know if I'm still showing any resistance to the protease inhibitors.., since it's been a long time that I was exposed to the Telaprevir. Without them checking, there's no way to know for certain. They also have never run a IL28 test, so I don't know if I'm a CC, or a TT, allele. I think one of them, is harder to clear, than the other one.  I really don't want to keep on doing 'treatments in the wind' without having all the information available to make the right decision.  
Susan400
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683231 tn?1467323017
Just want to add they do my endoscopies in a hospital due to my history. Originally they were done in my gastroenterologists office in their endoscopy center.

But yes out patient in and out same day
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Avatar universal
It's my understanding they don't do biopsies anymore because of the risk factor. Fibroscan is what they do now. It's done rarely or only when needed for treatment.
Now your ultrasounds for your liver are done every 6 months. It'll help monitor liver disease progression. Endocopies are done every 6 months and once every year max depending on your condition- it's to check for internal bleeding or the need for 'banding'. Ultrasounds are EZ peasy. Endoscopies are a easy but annoying to have them done. It's an "out patient procedure"
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317787 tn?1473358451
Hi there, not sure this will help however when I was first diagnosed I had a biopsy. At that time I was told the norm was every 5 years, that was in 2008.  
Before I was cured of HCV I was required to go see my hepatologist every 6 months for blood work, sonogram, AFP.  At every visit he feels for my liver spleen, etc.
After I was cured he said once a year for AFP and sono would be the norm.
I asked if I should get a biopsy and he looked at me a little surprised and said no.
I hope this helps you.
Oh my sonograms used to say that I had a rough echotexture to the liver consistent with cirrhosis. This last sonogram in June, 2 and half years after cure; stated smoother texture, no sign of cirrhosis.  I have been going to the same place so they compare
Dee
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Avatar universal
I know what you mean about the lack of physical exams.  My family Dr, who is very knowledgeable, has always felt my upper abdomen area at every exam - he has been my Dr as long as I have been diagnosed - but the hepa only listens to my lungs.  I think Drs are getting so much more info from tests U/Ss, etc, these days, AND have to be so careful because of all the sue-happy (no offense meant - maybe that should have been suit happy), that they have gotten away from touching patients.

I wouldn't get concerned over it.  Pat
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Avatar universal
I'm not losing sleep over this. I have too many other things on my worry list to cause me to lose sleep!!  I just remember the good old days when Doctors took their time with the patients instead of funneling them through the office like we're 'fast-food' patients.  I don't go to a transplant center, just a normal private practice HMO doctor. The nearest teaching hospital from me is a 3 hr drive and 6 hr round trip, either direction. There's one 3 hrs (Mayo)North Florida, and in Miami and then, in North-Central(Gainesville). There might be one in Tampa, but there again, that's a 3 hrs treat since I don't live on that coast.

Susan400
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683231 tn?1467323017
My doctor at the liver transplant department doesn't do a physical exam either and I have cirrhosis for 7 years now. The can see ascities on the ultrasounds I get every 6 months I have just a small amount which would not be noticeable on physical exam anyway.

I wouldn't lose any sleep over it
Lynn
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Avatar universal
It bothers me too, that he doesn't touch me.  It's not like I come in there stinking, or dirty, I don't.  It's crazy. He's a G.I. doctor who did a fellowship in Hepatology, which was where the Hepatologist at the teaching hospital (where I had just finished doing a clinical trial), met him.  The Dr. at the teaching hospital is not on my HMO and is 3 hrs away from me, but since he said this current doctor of mine had been one of his 'fellows' and it just so happened that this guy was on my insurances HMO.  I like this Dr. he's very nice and all, but I don't understand this lack of physically examining me. I mean think about it, he's doing sigmoids and colonoscopies and putting tubes up peoples backsides..., and pushing on my little old abdomen is so much less icchy than that,..., don't you think?  I don't know why he was always doing the AFP's, I just always thought that they were routine.  The last biopsy I had #5, done in 06/2010 showed that I'd had some improvement since biop #4.  On #3 and #4, I had bridging fibrosis and on #5, it showed no bridging.  But, I've been noticing more belly swelling and haven't really been sure if it was a gas thing, constipation, or caused by retaining fluid.  This is why he should be examining me.  I think he just assumes because I'm normal weight and workout constantly, that I'm low risk and because I'm a woman.  But, I've heard of several women progressing to cirrhosis and I have a woman friend who has cirrhosis and she's currently doing Harvoni.  Also, you know how, some men get like a red rash on their cheeks when they are heavy drinkers?  Well, I haven't drank a drop of alcohol in coming up on 20 yrs, but I have this red dotty thing going on, on my cheeks.  It's not rosecea, because there's no pustules or pimple look to it and my dermatologist hasn't diagnosed me with rosecea.  Do you know of what I'm talking about and is it one of the 'signs' of liver disease? It seems more noticeable the day after I've had a bad night with my sleep.  The problem is with a Medicare HMO is that they rush in and out of there so quickly and I believe they try to cram as many patients as possible in, on their office days.  He only sees patients 2 days a week. The other days he's doing procedures.  It's not that I think that I've progressed up to cirrhosis, but how does he know whether or not it's improved or progressed back to the bridging w/o a fibroscan or a biopsy. And without examining me? That's my puzzlement.  Susan400
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Avatar universal
You wrote...."On our call last week we learned about more insurance companies who were signing on to make AbbVie the preferred treatment, just like Express Scripts did?"

Would you share which insurance companies are doing so?
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Avatar universal
Susan, I do not believe the AFP is part of fibrosure. But I am a bit confused here. Why is your doc ordering AFP's and ultrasounds? They are usually for patients with late stage disease.....mainly cirrhosis. Am I remembering correctly that you are Stage 2? It concerns me that he is not doing a physical exam each time he sees you. He could tell a lot by that kind of exam. If you were progressing to cirrhosis, he could feel your liver becoming harder and smaller. On palpation he could hear differences in the tone of your liver. He could look for spider nevi on your chest and look for the start of an umbilical hernia. These are all signs that you are progressing. I am actually shocked that he isn't doing this, at least every few visits. I really doubt you could get insurance to pay for an MRI, ( Nevermind the radiation exposure) without a diagnosis of late stage disease.      

If you would consider the AbbVie drugs at some point, you hopefully wouldn't have to jump,through hoops with your insurance company. On our call last week we learned about more insurance companies who were signing on to make AbbVie the preferred treatment, just like Express Scripts did? Abbvie is clear that they want every patient to be able to treat.

                                                                    
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Avatar universal
Do you know if the AFP is a normal part of the 'fibro blood test' workup? I ask this because in the past, he was doing it like once a year, or even twice a year and when I was looking at the bloodwork they've ordered before I am to see him agaiin (around the first part of March), I didn't see an AFP ordered.  I asked the CMA about this and he was going to look into it. I thought that was supposed to be standard, too.  

I will treat again, sometime, just not anxious to jump right back into a 13th treatment. If they are pushing for it when I see him, I'm going to say, " You and your office, 'do all the talking to the insurance company, the drug company, write the letters for the authorizations, plead with them, etc., etc., because I have no desire to put myself into the stress of that all'...if they want me to do this, than they will have to do all that crap...     I am just too tired of it all to mess with it.  I would take the meds if they get it for me for free or at a reasonable low cost co-pay, and I would get the appropriate labs done, but any of the massive amount of begging and phone calls..., that is not going to be happening on my end. Not, if they want me to do it anytime soon that is.

Susan400
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Avatar universal
I don't actually want another biopsy, but am wondering how they are able to tell if there is any progression w/o one. My doctor literally never touches me, except to shake my hand when he comes in the room. He never palpates my liver, looks at my abdomen, nothing.  He hasn't done this since I became a new patient of his in 2007/2008 time frame.  He's relied solely on his ultrasounds and sono's and the one the couple of biopsies I've had while I was his patient. He does these fibro labs and MELD labs, CBC, chem test, and that's about it. Now, in the HMO he's evening wanting to scale down on the sono's to once a year. Makes no sense to me. My AST never went normal and now, they have increased back up again due to the relapse.  I just get concerned that something other than a sono should be done.  I simply can't make a 6 hr round trip drive to get to the nearest fibroscanner, for a 15 min. test. It's just not practical.  So, my next thought, would throwing in an MRI w/contrast, like in between all the sono's, like in lieu of a biopsy or scan, be of any benefit? Show anything more?
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Avatar universal
A rigid diet is not always necessary to help improve your liver -- IMHO any efforts in the right direction lessen the strain on the liver, at the very least, and depending on what you are eating/not eating the benefit may be greater.  I agree about the alcohol.  Feb 14th 2014 was 20 years for me.  things like that and not adding any sugar or salt to foods, eating NO candy (and I ate lots before) no fried foods, exercising more all give the liver a break, or better.  Also, I agree, all your tx kept the virus controlled, which allowed your liver to take advantage of the doetary improvements you did make.

Sorry it is so far to a Fibroscan facility.  At least your Dr is still monitoring everything carefully (Labs and U/S).

Good luck and good health.

Pat
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683231 tn?1467323017
Yes that is the purpose of my liver ultrasound in conjunction with an AFP blood test to monitor for evidence of liver cancer.

The ultrasound report also makes note of the size of my liver and spleen as well as direction of portal vein and splenic vein blood flow to monitor portal hypertension progression.
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Avatar universal
The last consensus conference stated biopsy should be done every 5 years. That was a very long time ago. At this point, not many doctors are doing biopsies. The thinking is that the treatments are so good, why put the patients under the slight risk of complications from biopsy. And once you have cirrhosis, it isn't necessary either. Ultrasound does not always help with staging. I was stage 4 but my u/s looked fairly normal. It is good for finding tumors. It sounds as if all the treatments you have done may have pushed your stage back a bit. I hope so. It is likely that if you do progress to cirrhosis it would show up in your lab work (low platelets) and your doctor might be able to tell from your physical exam. Why put yourself through another biopsy? Will it change anything you do?
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683231 tn?1467323017
My treatment plan was a biopsy every 5 years until I was found to be F4 cirrhosis in Jan 2008. Since then no need for biopsies.

I did have a fibroscan before my doctor submitted to my insurance for Harvoni in case they needed something more recent confirming the cirrhosis.

Even with cirrhosis my doctor who works in a liver transplant center would normally have me do blood testing at 6 month intervals with ultrasound and an annual dr appointment. I also have to do an annual upper endoscopy for survailence of possible esophageal varicies since I already had them form and had to have banding to get rid of them.

Hope that helps
Lynn  
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Avatar universal
Also, like I said above, I don't have the ability to get a fibroscan as there is not one in this county.  
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Avatar universal
I don't really stick to a rigid diet. But, I do try and eat fairly healthy, not overdo the fats, i.e. fried foods. But, I know me and don't see me ever turning into a vegan who eats only organic foods.  It's just not something I can do, I'm being honest about it.  I don't drink alcohol at all though and haven't for coming up on 20 yrs. Rarely ever eat fast food, unless I'm on a long car trip and even then, I try to go for any of the healthier choices that they may offer, like a salad as opposed to a cheeseburger for example.  Susan400
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Avatar universal
Susan:  Sorry to info to offer, except I have seen - and my Dr has said that they have been using Fibroscans and Lab work, predominantly, in Europe for several years (we were also discussing how frequent).

I will look for any studies, and, I am sure, Dee will as well - and she is good at finding info.

Just as a by the way, you have said that you are following a liver friendly diet, exercise, and you were on treatment and Undetected dor several months.  It is possible that your liver comdition has improved.  Hope so!  

Pat
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