I want everyone to have every test they can to give them the max. info they need, this is why I am advocating the tomography/CTscan studies because it told me a lot that I didt know before the test. In ADDITION to your liver biopsy ( definately not in lieu of a biopsy. there is tons of evidence out there showing it is a good idea to have these studies done. Why not increase your info. with any test that can help? We all have heard biopsy is not perfect even tho it is the "gold standard" it can also MISS cirrhosis and only tells you about liver structure not blood flow, this is just another tool in the arsenal. Cirrhosis CAN be determined through CT scans/tomography and in addition they get a look at your portal tract and bilary system in your liver which is VERY important info. for anyone with liver disease and something biopsy will NOT show you. It can spot developing problems in the early stages.I learned my spleen was slighty enlarged, something no other test has shown and a biopsy would miss. The idea that cirrhosis can not be determined by anything but a biopsy is not correct. There are other diagnostic tools we all can use and benefit from.
In some patients liver biopsy may not be necessary or safe and the diagnosis of cirrhosis can be made by other means. In some cases the combination of the patient
I had an ultrasound is that the same thing? LOL stupid huh but I have no idea.
I have had every test the doc has even thought of at this point and FULLY believe the more info they have the better. Pain, no pain...that is completely irrelevant. Knowledge of what is going on is much more important than any of that little selfish worry I think.
I had an ultrasound prior to tx too. It showed nothing and the doc said was "perfect". It is not the same thing. This was an abdominal CT scan with and without contrast (meaning you have to drink barium) I will call them today and ask what exactly the thing is, I know it takes pictures in slices and is a new machine. I aso know the SKILL of those doing the test and readig the results is very important but you being in NY I am sure you can find top notch people to read them, have Dr J or his people look at the pis for ya!
Unfortunately I dont know enough about it to say yet. I will find out asap exacty what I had they told me "an abdominal CT scan with contrast" so thats all I know so far. That and the nurse saying it took MANY pictures in "slices" if that helps. Sounds to me like you had one done too.
I will find out the exact name of the machine, etc. when they open and call me back. I left a message, someone will call hopefuly today.
Good Morning Friends, what I had done is a CT guided liver biopsy
than the next week they did an ultra sound, which to be honest I felt was odd since I had already had the CT, so I called the Doc to ask why, thats when she told me it was to look for tumors, cysts ETC. I really trust her knowledge, she is a Professor at UCLA, specialty is infectious disease, I feel I'm getting good care she sure as h*** is watching my labs, every other week I'm getting jabbed.
You say: I learned my spleen was slighty enlarged, something no other test has shown and a biopsy would miss.
A top notch gastro would probably have discovered your enlarged spleen with palpation and, of course, that is one of the things that should be looked for following a diagnosis of liver disease. My experience has been that physical examination isn't nearly as thorough today as it was before all these tests became common place - a lot of these guys just don't have the skill set to perform detailed exams with their hands, eyes and ears. But, once in a while a physician does a very thorough physical exam and you know right away that it's quite different from the rest of the exams you've undergone. I have been examined by a lot of doctors over the last 10 years and that's my take on it. Mike
As a stage 3, my doctor recommended alternating liver ultrasound, CAT Scan and MRI every six months. However, the recommendation was to screen for liver cancer and not to diagnose cirrhosis or attempt to stage liver fibrosis. Currently, I'm choosing to just do ultrasound and MRI because CAT scan involves more radiation.
Mike, earlier posted an article from the Mayo Clinic, that suggests the same. The last two posts in the thread are the relevant ones:
In part it reads:
"The last and most conclusive way to diagnose cirrhosis is a liver biopsy. A physician removes a tiny sample of liver tissue and examines it under a microscope. The procedure can be conducted using a needle biopsy technique that typically requires only local anesthesia."
Another interesting article is by Dr. Nezam Afdhal, a leading hepatologist and researcher into the dx of fibrosis/cirrhosis using non-invasive techniques. He is the head of the current Fibroscan trials in the U.S. It is interesting to note that he doesn't even mention CAT scan in this article:
I don't think you or I are trying to devalue the benefit of scans. We both know they can reveal very valuable information and I have had numerous scans and I assume you have as well. We're probably just confusing the issue. Different tests yield different information and hopefully the better doctors are using any and all tests that don't pose a significant risk and which are likely to give more information to the treating physician. We're almost getting to "my CT scan is better than your biopsy" and that's probably not where we want to go. Mike
sunspot CT means computed tomography, the difference might stem from doing it with a contrast(dye injection) or without. I think Paris must have had this, since she mentioned contrast and the discovery of her kidney stones. the ultrasound does not use contrast as far as i know.
as for the fibroscan:
if i might add, the fibroscan mentioned earlier is only being used on subjects who had a liver biopsy within 6 months, & have not treated for hcv, this is what I was told in an email by them. it is not readily available for all that ask for one.
I did not qualify for one because I treated, was SVR and did not have a bx within 6 months.
Didnt say it was anything new, however, I have not heard on this board often if at all that the CT scan is VERY beneficial in showing condition of portal tract, spleen, bilary system,etc. and can indeed diagose cirrhosis nor do you hear here it is a good plan to get one. You only hear " get a biopsy get a biopsy" here. People who are geno 2 and 3 are often told they do not need a biopsy. From what I have learned, a CT scan would benefit ANYONE with liver issues and/or HCV and give you MORE info than just having a biopsy to determine the state of your liver struture.
If a new person to HCv asks about testing, I will be sure to suggest to them an ultrasound, biopsy AND abdominal CT scan studies along with their complete blood work from now on as they can have more info about their liver and that is a good thing.
I am just trying to share info, you dont have to be snippy or mean, Mike.
No where have I said " my CT scan is better than your biopsy" or anything like that!
gold standard or not, biopsies are limited in the info. that they give the patient AND are KNOWN to miss things. Patients think if they have that biopsy thats all they need but CT scans offer a TON of info relevant to the HCV patient beyond the info a biopsy can offer. Everyone should get one if they possibly can, plus it is NONinvasive.
No offense to anyone, but I'll take the results of my biopsy over the results of my CT scan because in my case, my biopsy showed the fibrosis whereas the 2 different CT scans I've had (with and w/o contrast) showed nothing. And the biopsy gave my doctor a better picture of what was actually going on internally. Also, I haven't had the Fibroscan, but I've had a Fibrospect test done, which rated me as between Stage 3-4. Between both the biopsy and the Fibroscan showing around a Stage 3 and the CT scan showing nothing regarding fibrosis or cirrhosis, I think I'd rather ere on the side of caution. I've had 3 separate biopsies and each one showed progressive fibrosis. That was spread out over the years, not back to back or anything drastic like that. It's not that I want to be rated worse or anything, but I do want my doctor to know more accurately the truth of what's taking place in my body. I'll still keep on getting the ultrasounds and the Alpha-Feto-Prot. tests as well. Usually the docs order the ultrasounds-AFP. once a year. The rest of the time they're doing LFT's and viral loads. And approximately every 3-5 years a liver biopsy. I guess everyone has to do what they feel is best.
any test can miss things, that is a given. that is why MDs use more than one diagnostic tool to rule out conditions and come to a dx.
Some might not want an invasive procedure and others might not want radiation exposure plus the possible reaction to the dyes used. It seems to be a matter of choosing the test that will answer the specific question you have. If you are looking for staging and presence of the hcv virus in the liver, need bx, if you are seeking answers to other things, choose the dx tool that will offer it.
I don't like to discuss my tx doctors, etc, but I see no harm in saying that I have had two Fibroscans, at one of the four centers.
One scan mid treatment, and one fairly recently (post treatment). The first can closely correlated with my biopsy of two years ago and staged me at "3". The second scan dropped me down either a whole stage or 3/4 of a stage, I'll have to find my notes which are somewhere under my socks which are probably under the dishes which I can't find :)
I truly think -- and so does the doctor who was supervising the scans -- that Fibroscan combined with newer blood markers now under investigation will soon revolutionize hep c treatment by affording everyone a fast, non-evasive way to measure liver damage. As stated, right now access is limited and FDA approval is still pending trial results.
Jim, thanks for the info relating to fibroscan study, but if I read it correctly, it's for people who plan on getting biopsy in near future. I would assume they want to compare results with bx. Thanks anyhow.
ps what you mentioned in a post about the fibrosure, concerning the upper and lower value (can't remember your exact words)...my doc told me the same. If it comes out in the in between numbers, it wouldn't be useful info.
Yes, that is what I am finding out. A CT scan can add very important info to the picture. For those told they dont need a biopsy or those watching and waiting, a CT scan is a great noninvasive diagostic tool. If you can get one, I would. I am blown away at how much I learned about the whole liver SYSTEM not just the structure. My doc has always said biopsy is "limited" and can miss important info. This is not to say people dont NEED a biopsy too, this is just another tool we can use to help us deal with this illness.
The skill of the person reading the results and the quality of the machine taking the pics is also very important.
Hope your hubby is doing ok and not feeling too bad.
And points are being lost in the mix. My point in short is that MRI's, Ultrasound and CAT Scans are extremely useful BUT for primarily dx liver cancer and only secondarily for suggesting Cirrhosis and certainly not for a definitive diagnosis.
For a definitive diagnosis of Cirrhosis, the primary test currently is needle liver biopsy with Fibroscan and Blood markers now "circling" very close as Dr. Afdhal puts it in the previously cited article. And, also, as you say, in some cases no tests are needed if there's bleeding, etc, etc.
Well I have a "top notch" gastro and the enlargement CAN be missed unless it is already enlarged ENOUGH to find in palpatation. Personally I am glad to know at the "slighty" enlarged stage that the CT scan showed.
Palpatation is the poorest, most rudimentary diagnostic tool of all, never depend on just that.
Never said you did :) Just trying to make the distincition that some tests/procedures are better for one thing and others better for another.
As I stated earlier in the thread, you'll see that I have CAT scans as part of my liver cancer screening process but not to check for fibrosis or cirrhosis. That said, I prefer the MRI alternated with an Ultrasound on an annual basis, since CAT scans have more radiation. I'll probably throw in a CAT scan into the mix every five years if I find it necessary or if either the CAT scan or ultrasound suggests anything.
Frankly, I only initially raised this, because I'm hoping that your scan is wrong (suggestive not conclusive per the Mayo Clinic Article) and you don't have cirrhosis.
I hear your frustration. I just KNEW in my gut for some reason,even thought all my blood work was within normal. I guess because I was so dang sick, my hunch was it was worse the it looked like it was. My doc is a bit older and does a LOT of palpitating each time I go and was educated when that was a very important part of training but things can fly under the radar so I support having ALL possible tests you can get and it is rarely mentioned here but was super valuable to me.
I was lucky the doc is supportive and listened to me and let me restart right away as I did, our damage can impede SVR but it does NOT mean we won't clear it, we just have to go longer and get every last one of those suckers dead. Dr. Cecil suggests two YEARS minimum ad I am considering trying to do that right now. Please, dont look back. You have done all you could do, got the new doc and are on track to knock it down! Soon you will be back on this stuff and kicking some viral bootie.
Everything I have read says the best thing we can do is stay on Interferon.
I hope you get to start tonight! Wecocme back to he!! (kidding)
If you get a chance, let me/us know what the doc said today. One thing I did was when I restarted I doubled up IFN ( twie a week sun and wed. shots for 30 days) and took 1600 riba daily.So I ho[e you tak to your doc about dosing. Some stuides do show that is beneficial to us histologically.I was UND by week 4.
take care, talk to you soon
I posted this below, but thought I would move it up here in topic.
I am interested in this info, as well. Since my GI doesn't think a bx is necessary, since I am already txing and the risk etc, I am REALLY wanting to get more of an idea of my stage/grade etc. Obviously Brian Fog was making me think that I had a CT, when actually all I had was an Ultrasound. I was interested in the billirubin and also platelet counts that could indicate cirrhosis.
Do you think at this point in tx, 16/48 that it is SOC to ask for a CT or other scan to find out if I am cirrhotic? It is MY worry and not really necessary for my continued tx, unless I relapse or have some problem. What do you think?
I know someone who had two fibroscans but did not have a biopsy within a six-month time frame.
My understanding is that it's on a case-by-case basis and if your doctor happens to have access to the machine -- only 4 in the country I believe -- then they may have some leeway, if not in the trial as a private patient.
But yes, access currently is quite limited to Fibroscan except at those four U.S. locations. Hopefully that will change soon.
One doctor told me that he hopes within the next couple of years Fibroscans will be all over the place and an integral part of the exam in your local hepatologist's office. Of course, it still requires FDA approval, and that is the purpose of Afdhal's trials.
Any tests adds info to the table. That said, I did not have any scans mid treatment since my doctor doesn't believe it can either stage fibrosis or is definitive for cirrhosis. I do the scans every six months -- or I'm supposed to :) -- to screen for liver cancer.
It isnt a question of taking "biopsy results over CT results" at all, it is just another tool in addition to a biopsy that can help the HCV patient know more about the condition/workings of their liver.
I am puzzled why anyone would argue with patients getting MORE info to assist them in their fight with this disease. I am also puzzled as to why it is rarely or never mentioned as a excellent tool to use in this forum knowing what I know now.
that was the thing, mine was NOT enlarged on palpatation but the CT scan showed it was a tiny bit enlarged. My doc and the other doc I saw both did a ton of palpitating and poking around and by that measure it wasnt enlarged.
My doc recommends the laproscopic(sp) biopsy you speak of also, it is the one he prefers to use too.
I wouldn't 100% rule out Fibroscan regardless of any trial requirements. Say, for example, you went up to Boston as a private patient of Dr. A. who runs the trials for a complete consultation.
I'm not saying you'll get a Fibroscan thrown in, but it might be worth a call to his office to find out if you're so motivated.
Also, if you're a geno 1, I personally wouldn't treat until you had either a liver biopsy or fibroscan that demonstrated significant fibrosis. In about a year, SVR data should be available from the promising Vertex drug now in trial. We will know a whole lot more. That might be a reasonable time for those with little or no liver damage to make a treat or not to treat decision.
Good morning all.
I don't post often but thought I would give my two cents worth.
I believe all tests have their value, and all tests can give different results. I also have had a CT scan in the past and it did what the Dr wanted. But the true test is the Biopsy which I have had four in the last 27 yrs. The best Biopsy in MHO is the Lathroscopic Biopsy, which I had last yr, prior to tx, due to low platelets. It can give way more info because the Drs see and take photos of the organs. The needle is guided by the camera and if any bleeding occurs they can cotterize.
I have known my spleen has been slightly enlarged for about 15yrs, and it did not take a CT scan to discover this. My gastro at the time could FEEL IT when doing a physical, then followed with a ULTRASOUND which confirmed the size. According to my Hepatoligist if the spleen can be felt it is enlarged. Also the Lath Biop confirmed the enlarged spleen.
I believe that everyone of us should always have more than one Drs opinion on our diagnosis and tx.
I'm geno 2, not 1. I know some would biopsy and wait if possible.
This gets so confusing. I know the other option is to get bx and if little or no damage, wait, as I stated above, but if interferon is still in the mixing bowl,its going to be a horror then also(as far as sx )and who really knows if the new stuff will even be as good or effective as current regimen, as time will only prove. I don't always buy into "New" is always "better." Sometimes it's the 3rd or 4th new test drug that makes the best medical breakthrough. My problem is I just want this thing out of me. Last time I checked my albumin and billirubin were normal, but all of a sudden lately, I felt a little itchy and I know that can be sign of cirrohsis. Now the itchiness went away last few days. Also thyroid can cause itchiness and of course I also found info that can be a sign of cancer, so for my type of mind, I need to pull this thing out of me, so I don't continue to study my body daily as I walk pass every mirror and window reflection. I feel that the the longer it stays, maybe this gives it time to hide a little deeper, only to resurface again after we think we svr. All this occult stuff adds worry to the equation.But if or should say "when" i svr I will work hard with training my mind to believe it's over and done with for good.
Going up to boston is probably a good idea, but I just don't feel motivated. I know that lack of motivation can be a sign of depression, hope its not that. I'm leaning towards it's the "convienence" of traveling 10 minutes to my doctor.
Thanks for the info. I better get off computer and get outside and enjoy the day. We are actually having a day of low humidity. Not too many of those round these parts.
The decision -- treat or not -- or even the biopsy -- is not as clear cut with geno 2's. What the biopsy can add to the table, is as you suggest, how much time you reasonably can wait before treating.
I had a particularly hard time with treatment and its aftermath, so I definitely have a watch n' wait bias as opposed to treat now. Still, I think my grey matter -- or what's left of it -- concurs with my bias. If you haven't checked out these recent threads on side effects -- both during and after tx -- you might.
I truly understand your wanting to get the virus "out" of you with haste but as I see it, it's not about the virus at all but about fibrotic progression. IMO the risks of tx can indeed potentially outweigh the benefits in many of those with little or no liver damage.
If you do decide to treat -- and you know you have little or no liver damage -- one reasonable strategy would be to try and limit your time on the tx drugs.
One study suggests that a 12-week "short-course" is as effective as 24 weeks in geno 2's who treat with Peg Intron (16 weeks if you treat with Pegasys) IF you are non-detectible at week 4.
If you buy into this strategy, of course you would want a very sensitive viral load test at week 4. Something that goes down to at least 50 IU/ml and preferable a test like Heptimax that goes down to 5 IU/ml.
So let's say you're non-detectible at week 4. Then you treat another 8 weeks and you're done. Let's say you're not detectible at week 4. Then you quit, and go into watch n' wait mode. Maxium exposure to the tx drugs with this hypothetical strategy is 12 weeks.
The above is simply a theoretical tx strategy based on my own non-professional musings, but something definitely worthwhile to discuss with your doctor if it strikes a chord.
As far as Boston is concerned, don't know where on the East Coast you're from, but def worth the trip if you're thinking of a second opinion, which IMO is always a good idea prior to treating. I had three. Doesn't mean you have to treat up there, but just to be evaluated and perhaps get the scan.
Information here is good. Researching the internet is good. But sitting across from a top hepatologist brings something very new and special to the table. You probably read NYGirl's account of her visit with Dr. J in NY. Well, Afdhal is in the same league.
Anyway, I'm sure you'll end up making the decision that's best for you. We all look at this so very differently and often no rights or wrongs.
I'm not sure if my scans will be part of the trial data or not. My understading is that the scan data will be evaluated in numerous ways, so maybe I'll be included in some of the analysis and not in others. My treating doctor did not suggest the scans. It was my idea and I made the arrangments with my doctor's blessing. "Trial" can be misleading. You go in for a couple of hours, meet with the doctor, nurse and scan technician and you're done. Scan takes less than five minutes.
I am not saying there could be hidden destruction going on I am saying it can be a very valuable tool to gather more info. It could be what they find could EASE fears too.SO sorry I mixed that up, not your hubby your son! If I was you, I'd try to get one just because it gave me more info but I have a 24 year old son too and he does what HE wants not what Mommy says anymore lol
My report contains info on the portal tract, bilary sytem and loads of info on size texture etc.
Geno 2 and 3 in particular who do not have the benefit of biopsy would benefit, but ALL benefit from MORE info.
Sf- my doc doesnt do biopsies on tx however, the Ct scan CAN be done on tx. Mine was.
ps. did you get my mail last night?
I would never go on treatment without a biopsy...And even though I had all the tests, no one mentioned my liver and spleen being slightly enlarged until my Doc palpated the areas involved, I don't think it should be the only diagnostic tool, but I think hands on care has been pushed to the back burner these days. Being in the nursing field for many years, even as a nurse you need to touch your patient to really know whats going on.
So let's say you're non-detectible at week 4. Then you treat another 8 weeks and you're done. Let's say you're *detectible* at week 4. Then you quit, and go into watch n' wait mode. Maxium exposure to the tx drugs with this hypothetical strategy is 12 weeks.
Gave me alot to think about. There is so much for me to continue to learn. Makes it so much easier to learn from people's experience and knowledge here on this site.. and on that note........Wonderingwhen,..hello and great to see we have yet another person who is filled to the brim with knowledge and experience as some others on board. Thanks for sharing your info with all of us. Very informative, hope you continue to post. thank you
When I went to this new dr. He did an exam and could not tell my spleen was enlarged. But all my test say that it is.
The sonogram said: spleen is enlarged measuring 17cm probably secondary to early hypertention. Impression: hepatomegaly with fatty changes. and spleenomgaly.
The ultra sound said: Liver appears to be mildly enlarged demonstrates a coarsened hepatic echotexture with decreased through transmission suggestive of fatty infiltation of the liver. Impression:mildly enlarged fatty appearing liver. And moderate spleenomegaly.
Fribrospect said stage 2-4. on scale of 42-100. I was number 47.
The biopsy said: The liver biopsy has a nodular pattern, with broad bands of fibrous tissue in portal areas. Ovoid cell aggregates are present, consistant with regenerative nodules. the architectural pattern is confirmed in trichrome and reticulin stains. mild fatty change is also observed. Diagnosis: chronic hepatitis c with mild portal inflammation(grade 1) and cirrhosis (Stage 4); mild fatty change.
So I agree It doesn't hurt to get all the tests possible to see where your at. If you have cirrhosis that might explain the relapse. Same with me. I know in my heart the reason I relapsed was the cirrhosis. Had I just tx longer maybe I could have been SVR. You are so lucky you started right back after relapse. I see the doctor today. Hope to get the Ok to start back on TX tonight. Talk to you later, Debi
You know when they told me my ultrasound came back fine I was sure it meant I didn't have to treat. The way they worded it...everything is perfect your fine...or whatever I was sure I had no fibrosis.
I think it's SO important that the DOCTOR take the time to explain what the tests DO and are FOR because once they said that I really thought I was like Stage 0 Grade 0.
Wrong wrong wrong as I learned over time LOL.
But...I do know of TWO separate people who have hep that both believe because their ultrasound came back fine...they don't have to worry about treating AT ALL.
And you simply cannot convince someone that they need more testing - they won't listen and say "no the doctor said my test was fine". It's too bad so many people are out there like that.
Also..another friend with it said "my AST/ALT are fine I don't need any treatment". Well that's good you are sober NOW but what about the 25 years that you weren't...do you think they were great then? That it didn't cause any damage?
It goes to show that ALL the tests you can get IN COORDINATION with the other tests...is the answer that you really really need.
I don't think one without the other is enough at all.
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