As a stage 3, my first doctor recommended alternating MRI's, Cat Scans and Ultrasounds -- one every six months -- for life in order to monitor my liver. A second doctor was concerned about the radiation Cat Scans produce, and since I'll hopefully be doing these for a long, long time, he suggested only alternating MRI's and Ultrasounds. No x-rays are used in an MRI.
Wondering what everyone else has been told and is doing?
Also, if you know, did you have your mri with and without contrast and the same question for the MRI. I believe when the inject the dye in your arm, that means "with contrast". Not 100% sure here.
In case you get the two mixed up, as I always do -- the MRI is the one where you stay in this long claustraphobic tube for 20-30 minutes while hearing very loud clanging sounds requiring either ear mufflers or ear plugs. A good way to remember which one uses X-rays and which doesn't is that MRI stands for Magnetic Resonance Scanning. In other words, it uses magnets not x-rays.
you said....I'll hopefully be doing these for a long, long time,..... No jim any one of those only take a few minutes. You know my stage is 4. My hepo likes the ctscan the best. Says it give a better take on different things. Or he could own stock in the company. Plus mine are always done with dye. Now i gather if a spot showed up he didn't like he would do a mri.
I would agree with your dr., I would go between the MRI and ultrasound. My dr uses the ultrasound only with a bx in between. The MRI w/ contrast is the one they use with a form of iodine for clarity. I personally would back away from the CAT ( cat scan).
My doctor hasn't recommended doing anything yet in regard to checking my liver via ultrasound or anything after the initial test. Honestly, I don't think he is going to either because he's usually mentionned things we will be doing in the future and hasn't. I'm a stage 3 too so I'd think he'd have told me.
If you're a stage 3, I'd re-evaluate your doctor's advice. My understanding is that ultrasounds and MRI's are standard protocol for monitoring those with significant liver damage but maybe I'm wrong here.
Last week my doc rx'd both an ultrasound and a CT scan (with contrast). From what he said, he was looking for different things, fluids with the u/s, and any masses/tumors with the CT. BTW, that contrast stuff feels pretty icky going in. We're not yet at the point of a forward-looking maintenance regimine. However, your question is already on my running list of questions that I will ask when the right time comes. That list seem to be getting longer.
cdm says: Hope you don't use a microwave. :)
Well, I'll tell you one thing. If I'm going to put a piece of liver in the microwave, it certainly won't be mine. But not to worry, CDM, if you keep it up you may be good for a night light one day. LOL.
On more serious note, the first doctor said the reason he alternated all three was because each tended to be best for looking at different things. I see my doctor today and if he has a good case for me to have a Cat Scan, I'll listen. But I still think the long-term advice of minimizing cat scans is sound if the doctor is not necessarily looking for something specific and is in a long-term monitoring mode.
I'm a stage 0 Grade 1, and I will do the ultrasound then 6 months later the bx; then 6 months later another ultrasound, etc. I would rotate back and forth between the 2 tests, for awhile any way. After awhile I would think having just 1 test a year would be fine.
I don't recall whether the "fatty liver" suggested diagnosis was ever verified but if you clear and do not have a fatty liver I wouldn't be testing that often if your blood looks good. I don't test yearly or even every 2 years - I think it will be every 3 to 5 years and I'll get an ultra sound and contrast CT scan or at least I will be offered the opportunity for the tests. Whether I'll get them depends on my blood work and my overall health. I like to stay away from doctors and tests as much as I can and still be prudent about me health. Mike
Good point about the fatty liver thing, I almost forgot! I will ask my doctor if he thinks fatty liver is a possiblity -- GGT as of yesterday is double what it used to be but now normal at 40. If my doctor thinks it might be, I'll ask him which is better -- cat scan, mri or ultrasound -- in terms of getting a bead on it.
I'm a bit surprised about your schedule but perhaps there's different protocols for transplant patients. Is there any downside you're aware of with ultrasounds or MRI's other than the stress of too much information, too often?
I was/am a stage one and my dr told me I needed regular ultrasounds and testing for a long time if not the rest of my life. It seems that is not just the level of damage, but our bout with a virus that predisposes us to HCC.
First of all the throw the ultrasound out the door. It just does not give the information that you and your doctor need. I know before I had my laproscopic biopsy, the doc asked if I had a catscan or an ultrasound. He would have liked to see the catscan but didn't even want to see the ultrasound.
Second, the MRI is probably good. However, I had one for a problem with my leg a few months ago and it turned up nothing - other than the fact I had no deep tissue or bone damage. However, it was not help with my problem - still have it.
Third, what about a biopsy? I would think that would be the first thing you would do -- maybe in a few months -- just to get the staging done again and see what kind of reversal there is. Then, I certainly would not submit to 2 cat scans a year if the damage was less than the 3
All anecdotal - no fact - just throwing in my 2 cents, Jim. I will be interested to see what my doctor's protocol will be after treatment. I have my suspicions it will be a sincere hand on my thigh and a god bless..... and that will be the end of it. You see, I don't have a top notch anything - just what is locally available.
Fibroscan. It will be nice to have a reliably accurate non-invasive way to assess liver damage widely available. As you said bx is used as a tx decision tool. But, for me in the longer term, I'd like to know what this stupid organ is doing. Whether improving or not I'd like to find out if tx helps, has no effect or if conditions worsens. Although I try not to have uncecessary tests a view of liver health is a curiosity that is well worth the attempt while avoiding the risks of bx and possible allay the stress caused by not knowing what you look like inside.
Actually, it wasn't my doctor, since I never discussed biopsy with him post tx -- it was a paper I read. BTW when I did bring biopsy up recently with my NP, she said something like "I'd be *curious* to see if you're liver improved after treatment". LOL. Well you know what curiosity did to the cat. Not to say I won't necessarily have another one, but really no rush, and Fibroscan would be my first priority with perhaps some of those blood marker tests although current doc has no faith in them (not Fibroscan but blood marker tests.)
You got that right - relieve the stress. Since you are in the vicinity and can get one, the fibroscan certainly seems like the way to go. (f my liver damage was greater, I would certainly scope out a metroplex to get treatment - not this little old west Texas town.) My very best to you, by the way. I still don't even know wht to say about your current events except that I am sorry.
It's interesting how different docs have different takes on these tests and their frequency. Actually, never asked my current doc about MRIs versus Ultrasound versus Cat Scans -- since other issues have been on my mind while treating. Also, never discussed liver biopsy for same reason, except early-on when I thought a mid-tx biopsy might help us in determining tx length (my biopsy is now 3-4 year old) but he talked me out of that idea.
I did ask, however, a consulting hepatologist regarding post tx biopsy and he didn't seem particularly keen on the idea whether or not I SVRd. There is a school of thought that you only do biopsy when a treatment decision is at stake so what would be the point of a biopsy for me now, assuming I'm SVR? Let's say it goes from stage 3 to 4 -- I don't think they're going to treat me again :) Of course, I'm curious, but that is not supposed to be a good reason for biopsy as it does have risks. That said, if something shows up on one of my scans such as fatty liver, they might use a biopsy to dx further. But for now, my plan is to follow-up with the Fibroscan device, unless of course, my doc talks me into a biopsy.
Friole says: I don't have a top notch anything - just what is locally available.
You know, I consider myself lucky to have what just about anyone would consider a "top notch" hepatologist. I often post this fact, not to brag or the higher ground, but really to share what I learn from him with others who may have reservations about their own treatment. Still, I don't follow everything he says blindly -- quite the contrary -- and this thread is one example of how I look beyond what he says, to the collective experience here -- to help me make the final treatment decisions. To me, that's where a place like this really rocks -- sharing the collective minds of all our doctors as well of course our collective treatment experience.
I see your doctor's point. I guess the biopsy would be for my own curiosity at best after treatment. Since I was just 1/1, and had no fatty liver, I will not worry about that for myself.
To set out an example, I suspect my husband (who is hep C negative) probably has a fatty liver and some damage. His triglycerides are off the chart and he drinks a few beers every night. Altho he does not think so, I consider him an alcoholic. He mentioned having a hernia the other day. A lightbulb flashed and I decided if he goes under the knife, I will ask the surgeon to slip a liver biopsy in.
So my point here is perhaps if you ever have to have another procedure you could just slip a biopsy in too. I would be concerned about that many cat scans for the rest of your life.
By now, I'm ok with it all. When I look around the world at all the death and destruction and see entire populations with little hope I realize that I don't have it so bad. 'there but for the grace of God go I'. Success in life is meeting challenges, not necessarily overcoming them. Fewer challenges might be nice though.
I don't know of any downside to the tests except that I am allergic to contrast dye so I have to fill up on prednisone beforehand. I suppose there could be an argument made that all this **** has a downside but I have a juandiced view of that type of talk. But, I had a transplant and that changes your perspective slightly. I am everyone's next to worst nightmare so a little contrast dye or radiation doesn't trouble me at all. I disagree with Kathy about ultra sound. My surgeon uses them a lot and he is really involved in liver architecture from the inside out so I figure he knows. Plus I like that roller-ball applicator type thing - it feels nice and if the technician is wild and female it can be a whole lot of fun. Mike
I like those too Can-Do. Hey, I wrote a bad 4 letter word that starts with s and ends with t and it turned into ****. Is this a new thing and is it automatic or does someone have to read the posts and delete any dangerous words? This world we live in continually surprises me. Is it as silly as I think it is? Mike
I had a US last week and I think the tech was an honors grad from the Marquis De Sade School of Radiography. She wielded that roller thing like a shiv at a supermax prison. I was almost ready to roll over just to relieve the pain. You know, they keep it dark in those rooms when they are doing the tests. In the eerie green lighting from the monitor disply I think I saw a happy, but menacing, look on her face. "I'll be done with you in no time" she said in gutteral indifference.
Fl says: Fibroscan. It will be nice to have a reliably accurate non-invasive way to assess liver damage widely available. As you said bx is used as a tx decision tool. But, for me in the longer term, I'd like to know what this stupid organ is doing.
I'd probably get mine done in Boston. Schiff has one in Miami. Hopefully, if this thing gets FDA approval, they will be all over the place. Instead of having Tupperwear parties, we can have scannerwear parties. I'm sure CDM will have more to say on this.
cdm says: (I'm) not jim
I appreciate you clarifying that fact. BTW how often do you get the AFP? I get mine whenever I remember. LOL.
MikeSimon says: Plus I like that roller-ball applicator type thing - it feels nice and if the technician is wild and female it can be a whole lot of fun.
Funny Mike, just looking through my records and it seems that I'm up for an unltrasound about now. Where did you say that technician works and what's her name :)
Mike - you like those ultrasounds?I have only had two - the liver one and the thyroid. During the thyroid test, the technician (whose last day it was, btw) was talking on her cell phone to her son who was leaving college to come home and didn't know how to get on the freeway, and talking to her dad on the land phone who was telling her what to tell her son, I think, and basically ignoring me..................... and for the liver ultrasound, the student tech was a father of a childhood friend of my daughter's (who is 29) and that made the situation a tad uncomfortable plus they didn't know what they were supposed to be looking for and I didn't tell them. Plus I had to go to work, and felt slimed- I let hims slip and slide around awhile since he was just learning - what the heck.
I am sure the GI found what he was looking for - no tumors - but I didn't know the ultrasound was useful in the liver architecture. !
FL - with your attitude, all will be fine. I don't know about you, but I am sure glad Mike is still an active part of this board. Both of you -- in fact, so many of you here -- add so much to my life.
My Hep doc has shot me throught the tube. filled my veins with radiation while a large fly swatter moved over me, shoved a hose up my backside with a camera and clippers on it put me in a dark room rubbed lotion all over my stomach and I passed out when I felt the cold steel. Everytime I ask him why this particular test was ordered he says just to be on the safe side. He had to cancel our appointment this week because he is hung up off the Greek coast sailing his yacht. My firm answer to you concern is I don't have a clue but its a darn good question. Hang tough. Dale
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