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What to ask Docs about Biopsy and TX Decisions
I'm reposting this for flagirl54 since the thread she put in was empty. It seems this is a topic that will be of help to many who find it in the archives going forward. Flagirl asks:
I have a doctor's appointment to go over my liver biopsy results this week. What information should I be looking to get from my doctor?
Flagirl: The biopsy report can be detailed or very terse. I had my biopsy re-read and got a much more meaningful report from the new doctor the second time.
To be honest though, much of it was a bunch of technical mumbo-jumbo. Essemntially, you will be interested in two values. Grade is the current inflamation level, and more telling is Stage, which measures the degree of fibrosis progression.
This will be the launching point for a discussion of whether to treat the disease now, or whether to take a watch-and-wait approach. This will also be a good time to assess whether you've found the correct doctor to see you through this. Many are more experienced in this disease than others, and among those there are very different treatment philosophies.
I think it is fair to say that many who started treatment wish they had changed doctors first. Mine situation was a little different, where I didn't start right away, but should have known to change doctors earlier than I did.
Everyone, what would you ask when presented with the biopsy results?
BTW, good luck to you flagirl. This is a stressful time, but it gets better. Information is power against the disease.
I have a doctor's appointment to go over my liver biopsy results this week. What information should I be looking to get from my doctor?
Flagirl: The biopsy report can be detailed or very terse. I had my biopsy re-read and got a much more meaningful report from the new doctor the second time.
To be honest though, much of it was a bunch of technical mumbo-jumbo. Essemntially, you will be interested in two values. Grade is the current inflamation level, and more telling is Stage, which measures the degree of fibrosis progression.
This will be the launching point for a discussion of whether to treat the disease now, or whether to take a watch-and-wait approach. This will also be a good time to assess whether you've found the correct doctor to see you through this. Many are more experienced in this disease than others, and among those there are very different treatment philosophies.
I think it is fair to say that many who started treatment wish they had changed doctors first. Mine situation was a little different, where I didn't start right away, but should have known to change doctors earlier than I did.
Everyone, what would you ask when presented with the biopsy results?
BTW, good luck to you flagirl. This is a stressful time, but it gets better. Information is power against the disease.
Fishdoc:
<i>definitely keep the little ring. Keeps my 28 year old humble every time I drag it out ..........</i>
If you're needing to <b>drag</b> that thing out, maybe he's not humble, but more just uncomfortable being packed into his Levis?
Lioness:
<i>people with cirrhosis need 48 weeks Tx regardless of genotype.</i>
Do you have a source for that?
<i>definitely keep the little ring. Keeps my 28 year old humble every time I drag it out ..........</i>
If you're needing to <b>drag</b> that thing out, maybe he's not humble, but more just uncomfortable being packed into his Levis?
Lioness:
<i>people with cirrhosis need 48 weeks Tx regardless of genotype.</i>
Do you have a source for that?
Yeah, that bx was no where as bad as going to the dentist.I was so nervous before it. I had enough opiates to take of the edge, the first lot in about 20 years, made me feel annoyingly drowsy, did I actually like that feeling once?! Had liver pain for 2 weeks after tho. thought there might've been a small bleed but doppler was negative, turns out I woke up the old hep C, you know..how it goes into hibernation and then wakes up and makes your life blah for a week or so. So it was just bad timing. Its good knowing what your Bx results are and they are still encouraging people to have one. Esp as people with cirrhosis need 48 weeks Tx regardless of genotype.
Excellent words of wisdom above!
I would like to reiterate how important it is to have a clear understanding of your results - don't just accept what he says until it's crystal clear in your mind because it's so very, very important.
I wish I could find (I will look online for an image) the picture that helped me. It showed a drawing of one liver - broken in to the different stages next to each other.
When I realized exactly WHAT my liver looked like, compared to what it SHOULD look like - that is when reality really clicked home for me.
I think it was in the Be In Charge pamphlet that the doctor gave me on my first appointment. It must be online somewhere.
Best of luck with your results.
I would like to reiterate how important it is to have a clear understanding of your results - don't just accept what he says until it's crystal clear in your mind because it's so very, very important.
I wish I could find (I will look online for an image) the picture that helped me. It showed a drawing of one liver - broken in to the different stages next to each other.
When I realized exactly WHAT my liver looked like, compared to what it SHOULD look like - that is when reality really clicked home for me.
I think it was in the Be In Charge pamphlet that the doctor gave me on my first appointment. It must be online somewhere.
Best of luck with your results.
My bx. was done at a large teaching hospital. I was told there they have three different pathologist read it then they must come to the same conclusion. Now whether thats correct or not i don't know.
how much were you charged for the slides? and the readings?
In NY, they never give me the original x rays of anything, they make copies, not sure about the slides. Thanks for the info, I think I will call the hospital. The MRIs centers always give me the films to keep, but not the mammography centers or radiographs. Then you have the scans, they seem to keep those also. I will try and get the hospital records. I wish I would have done that 16 yrs ago, when I got the blood products.
In NY, they never give me the original x rays of anything, they make copies, not sure about the slides. Thanks for the info, I think I will call the hospital. The MRIs centers always give me the films to keep, but not the mammography centers or radiographs. Then you have the scans, they seem to keep those also. I will try and get the hospital records. I wish I would have done that 16 yrs ago, when I got the blood products.
My four readings were also done at four different, large teaching hospitals.
They were all signed off by only one pathologist and I did speak at length to two of them on the phone. Didn't get the impression that others were involved in the reading.
I think the system you describe has certain merits, but in the end it comes down to who these different people are, their experience, etc. The tricky part comes in the middle (stage 2 and 3) where it's common to get different takes on how much bridiging is actually ocurring.
To throw another monkey wrench into the equation -- in addition to the potential for results to be off as much as one stage due to patholoogist bias -- it can be off by ANOTHER stage (that's two LOL) if you add in factors such as absolute sample size and relative sample size.
-- Jim
They were all signed off by only one pathologist and I did speak at length to two of them on the phone. Didn't get the impression that others were involved in the reading.
I think the system you describe has certain merits, but in the end it comes down to who these different people are, their experience, etc. The tricky part comes in the middle (stage 2 and 3) where it's common to get different takes on how much bridiging is actually ocurring.
To throw another monkey wrench into the equation -- in addition to the potential for results to be off as much as one stage due to patholoogist bias -- it can be off by ANOTHER stage (that's two LOL) if you add in factors such as absolute sample size and relative sample size.
-- Jim
I agree where being a stage 2 or 3 could have different outcomes by whoever reads them. Me being a stage 4 would be easier for them. Now i would really worry if they said instead of a stage 4/4, i was a stage 5/4. "YIKES"
I'm believe I got the original slides but not 100% sure. I do know that there are no more copies left in the hosptital archives since they're now in my livingroom archives! If I remember correctly, there was no charge for the slides since I was supposed to return them. LOL.
As to the costs of readings -- all three of the re-readings were done in conjunction with consults with different hepatologists. In two cases, I remember a separate bill was sent (covered by insurance) -- in the other case, I believe it was just covered by that particular hepatologist's consulting fee, which was quite generous btw, but hey...
As I mentioned before, I remember seeing something posted some time ago that Hopkins will re-read slides sent in but not sure of a fee. But maybe it was the Cleaveland clinic -- maybe you want to check out both.
The question is -- other than for curiosity (which is legitimate :)) -- how much meaningful information will you get from a re-reading of slikdes that are probably what -- over 3 years old?
And since you seem to be doing pretty well with SVR, I can't see you sticking yourself again with a needle biopsy. An alternative way to spend some bucks might be to trot up to Boston for Fibroscan with Afdhal -- and if you bring your old biopsy slides with you -- there's probably a good chance they'll throw in a reading as part of the process. Hopefully, the whole thing would be covered by a combo of what appears to be a very liberal trial protocol plus insurance. I believe TallBlonde is doing the same this Spring. From what I hear, you will be impressed with the Fibroscan setup.
-- Jim
As to the costs of readings -- all three of the re-readings were done in conjunction with consults with different hepatologists. In two cases, I remember a separate bill was sent (covered by insurance) -- in the other case, I believe it was just covered by that particular hepatologist's consulting fee, which was quite generous btw, but hey...
As I mentioned before, I remember seeing something posted some time ago that Hopkins will re-read slides sent in but not sure of a fee. But maybe it was the Cleaveland clinic -- maybe you want to check out both.
The question is -- other than for curiosity (which is legitimate :)) -- how much meaningful information will you get from a re-reading of slikdes that are probably what -- over 3 years old?
And since you seem to be doing pretty well with SVR, I can't see you sticking yourself again with a needle biopsy. An alternative way to spend some bucks might be to trot up to Boston for Fibroscan with Afdhal -- and if you bring your old biopsy slides with you -- there's probably a good chance they'll throw in a reading as part of the process. Hopefully, the whole thing would be covered by a combo of what appears to be a very liberal trial protocol plus insurance. I believe TallBlonde is doing the same this Spring. From what I hear, you will be impressed with the Fibroscan setup.
-- Jim
Cuteus,
Once I had an appointment, I made arangements to pick-up my slides at the old hospital. No fee for that, but they wanted the slides back. I had an office visit co-pay for the new doctor. His staff said he'd put them under the microscope in front of me, but he didn't - I got the report later.
The first report said something like 'Stage 4 - Cirrhosis'. The second report was pages and went into detail about why this was NOT true cirrhosis. Clearly it's as close as you can get though - but I wasn't expecting to hear stage 1 on the re-read, LOL.
When my iron went out of whack, they had to go back for a new stain. Apparently additional sample material is retained by law.
As Jim says, I was told that a biosy can be off by two stages in total. I think that makes it difficult to establish the degree of fibrosis regressions.
Once I had an appointment, I made arangements to pick-up my slides at the old hospital. No fee for that, but they wanted the slides back. I had an office visit co-pay for the new doctor. His staff said he'd put them under the microscope in front of me, but he didn't - I got the report later.
The first report said something like 'Stage 4 - Cirrhosis'. The second report was pages and went into detail about why this was NOT true cirrhosis. Clearly it's as close as you can get though - but I wasn't expecting to hear stage 1 on the re-read, LOL.
When my iron went out of whack, they had to go back for a new stain. Apparently additional sample material is retained by law.
As Jim says, I was told that a biosy can be off by two stages in total. I think that makes it difficult to establish the degree of fibrosis regressions.
thanks everybody, I guess it is just curiosity mostly, but that trip to Boston might be a good idea. I thought the bx had to be within 6 mo or so. It is going to be 3 yrs for the bx, in May, so I better not procrastinate. I will contact them and see.
While getting the biopsy report re-read can be helpful, what you really want to do is have the slides re-read by a different pathologist and get a new report. In other words, if the source info is off, even the best diagnostician will come to wrong results. But...be prepared for different readings. I've had my biopsy slides read by four different pathologists and the stage ranged from 2 to 3 and the grade from 2-4. This is not terribly uncommon as pathologist bias is can often account for differences of up to one stage. That's why it's always a good idea to use the same pathologist (assuming you have confidence in him/her) for follow-up biopsies, so you have a modicum of consistency in the readings.
From a procedure point of view, what you want to do is get hold of your complete set of biopsy slides. Intially, I was only given one slide, but in reality there was a set of five or six, including the special stained slides. You want ALL the slides so the second pathologist can give you a complete reading. You will also want a copy of the biopsy report as any reviewing pathologist will need it for detailed patient information which is usually on the header of the report.
I've read that Hopkins routinely re-reads biopsy reports sent in by mail, but please check that out. The best pathologists are usually found at the larger, teaching hospitals and one reason is that because they see so many more slides. I'd therefore start with a large institution with a well-known hepatology department if I was go get my slides read again.
-- Jim
From a procedure point of view, what you want to do is get hold of your complete set of biopsy slides. Intially, I was only given one slide, but in reality there was a set of five or six, including the special stained slides. You want ALL the slides so the second pathologist can give you a complete reading. You will also want a copy of the biopsy report as any reviewing pathologist will need it for detailed patient information which is usually on the header of the report.
I've read that Hopkins routinely re-reads biopsy reports sent in by mail, but please check that out. The best pathologists are usually found at the larger, teaching hospitals and one reason is that because they see so many more slides. I'd therefore start with a large institution with a well-known hepatology department if I was go get my slides read again.
-- Jim
When I changed doctors, and liver centers, I physically picked up my slides from the pathology labs and delivered them to the new center. I got new slides made from the original bx sample. They kept their original first slides.
No charge. You paid for the slides when they made them,
Rudy
No charge. You paid for the slides when they made them,
Rudy
Here is another URL that you might find helpful, as it explains the Hepatitis/cirrhosis stages in layperson's terms. http://www.hcop.org/blog/index.cfm?data=20040218
Good Luck...
Good Luck...
Here are a lot of pictures to go with the words we here steatosis etc
http://tinyurl.com/ga3cr
There you go
while not the stages I was looking for is a real real good education. If you are ever tempted to drink or quit treatment cause it's too hard...give yourself a peak at what is really going on.
http://tinyurl.com/ga3cr
There you go
while not the stages I was looking for is a real real good education. If you are ever tempted to drink or quit treatment cause it's too hard...give yourself a peak at what is really going on.
Here in Aussie land, a liver Bx pre Tx is now not a prereq. Seems too many people were scared of Bx and not going on Tx. Also they figured it doesn't matter what stage youre at. If you got hep c you are eligible for Tx, Your ALT doesn't even need to be elevated anymore. I guess they are worried about future blow outs in the health budget. I had a Bx anyway and it showed inflammation 1, fibrosis 2.
How you doing gal? Hope all is well with yeah. Your here one minute and gone the next. Where im just plain gone. Lost cause here, out to lunch, out in the wild blue yonder. Take care.
Also hows the grandbaby doing?
Also hows the grandbaby doing?
You said hang and hope, now i can really relate to that. No need feeling guilty things will work out. As for being circumcised He'll be glad he was. I know i am. As for saying summin stupid here. Well if that kept us from posting then they would only need 1 or 2 threads a day. It would become a very lonely place. Keep you chin up soon you will be done and this will become all a bad dream when you wake up. Later tator
definitely keep the little ring. Keeps my 28 year old humble every time I drag it out ..........
My bx. was also very short, heck didn't even have a grade on it. Just said stage 4 cirrhosis with mild ongoing activity. And a few other non important things. I asked my NP about it and she told me to go to the records department at the hospital where it was done and they would give me a complete copy.
I am glad this thread was started since I had wondered many times why my biopsy report did not seem as comprehensive as others. Then, recently, a friend had an abdominal scan re read by another radiologist and a few things were noted that the first dr did not even comment on. Now, I am wondering if we can get our biopsies re read and how to go about it. It seems that if we are going to give so much wt to the amount of liver damage, in order to make a choice to treat or not, we should have a tad more than mild liver damage on the biopsy, even if it is staged and graded. I want details on cell necrosis and such, my report was very simple, too simple. Is there a different one they do for the hospital chart? How do we get things re read, like cat scans, MRIs, etc?
Fla Girl,
In regard to your biopsy question, I posted this earlier a few threads below, but in case it got missed...
-------------------------
Many doctors tend to go over the biopsy report quickly both to save time to devote to treatment issues and because they often feel it's too technical for the average patient -- and frankly, a lot of the verbage in biopsy reports is not that relevant unless the doctor flags it, but at least try and get the following information if not covered in the doctor's presentation. And don't be shocked if the doctor doesn't know all the answers, especially if he/she is a general practioner -- that's where question 5 comes in.
(1) What is my stage? What is my grade?
(2) What grading system is being used for my liver stage? In other words, if your stage is 2 -- then 2 out of how many possible stages. The answer is usually 4 and often the Metavir syustem, but it could be six.
(3)How big was my biopsy sample size and was it adequate to get an accurate diagnosis?
(4)Any other findings relevant to my treament such as fatty liver?
And the most important question of all -- because whatever you ask, there's never seems to be enough time to get all the information you want during a doctor's visit.
(5) Can I please have a copy of the biopsy report to take home with me for my records.
For more background, here's a decent primer:http://janis7hepc.com/biopsies.htm
Just remember, you only have so much time in the doctor's office so make sure you get the important stuff out of the way (general diagnosis/prognosis) before getting into too many details or you may miss out on the core stuff. One good strategy is to prioritize your questions, leaving the detail stuff for last if there's time.
Good luck.
-- Jim
In regard to your biopsy question, I posted this earlier a few threads below, but in case it got missed...
-------------------------
Many doctors tend to go over the biopsy report quickly both to save time to devote to treatment issues and because they often feel it's too technical for the average patient -- and frankly, a lot of the verbage in biopsy reports is not that relevant unless the doctor flags it, but at least try and get the following information if not covered in the doctor's presentation. And don't be shocked if the doctor doesn't know all the answers, especially if he/she is a general practioner -- that's where question 5 comes in.
(1) What is my stage? What is my grade?
(2) What grading system is being used for my liver stage? In other words, if your stage is 2 -- then 2 out of how many possible stages. The answer is usually 4 and often the Metavir syustem, but it could be six.
(3)How big was my biopsy sample size and was it adequate to get an accurate diagnosis?
(4)Any other findings relevant to my treament such as fatty liver?
And the most important question of all -- because whatever you ask, there's never seems to be enough time to get all the information you want during a doctor's visit.
(5) Can I please have a copy of the biopsy report to take home with me for my records.
For more background, here's a decent primer:http://janis7hepc.com/biopsies.htm
Just remember, you only have so much time in the doctor's office so make sure you get the important stuff out of the way (general diagnosis/prognosis) before getting into too many details or you may miss out on the core stuff. One good strategy is to prioritize your questions, leaving the detail stuff for last if there's time.
Good luck.
-- Jim
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