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No Fibroscan - Jim Help
Coordinator from St. Louis called back. Trial is in a different stage nationwide, now requiring biopsy within 6 weeks. Insurance won't pay.
I did go pick up records from my last office visit (Feb. 07) so here goes. Jim read between the lines for me: NP notes read:
At a previous appointment it was clarified that she had progressed to cirrhosis. Original biopsy found stage 2 changes but in light of a low platelet count, there was a suspicion for more advanced liver disease. CT of the abdoment found evidence of portal collateral systemic changes that confirm cirrhosis. The patient has well-compensated disease and strong hepatic synthesis. (Original July 06 CT report said: cirrhotic-appearing liver. 0.9 low dense lesion in right hepatic lobe. No definite enhancing lesions identifified. Portal vein is patent. Negative spleen. A few borderline prominent upper quadrant lymph nodes.) How did he get confirm out of that?
He checked for HCC at this visit. Ultrasound: A cirrhotic liver is demonstrated. Spleen bordline enlarged at 12 cm. No ascites, no neoplasm noted. AFP: result 5 ng/ml (range 0-6) (Keep in mind the Ultrasound tech started with the idea I was cirrhotic.)
Fast forward to May 5, 07. The trial I was trying to get into has my doctor in charge of it (I never see him, though, just the NP). For whatever reason, my Doctor looked me in the eye at "go time" in the trial coordinator's office (796) and after having my July 06 biopsy re-read, he says to me, your biopsy is a 2-1. I started to protest, because I was stunned to hear this, blurting out "What about all the other tests?" He almost cut me off, saying the biopsy is the gold standard. I said "In that case I am waiting to treat and beat it out of there. I took the summer off! Only checked in here once and while and didn't worry. But in the back of my mind...
Here are my thoughts:
Maybe he was actually trying to help me get in to the trial by leaving out results other than biopsy and was wishing I would shut up and not tip off the coordinator. Don't ask, don't tell.
He didn't look at my file first.
He is right. Just because it is cirrhotic-appearing and what does "is demonstrated mean? Maybe he thinks the other guys made a mistake?
There it is. Sorry it is so long? Just like everyone else, II only want to do this one time!
I did go pick up records from my last office visit (Feb. 07) so here goes. Jim read between the lines for me: NP notes read:
At a previous appointment it was clarified that she had progressed to cirrhosis. Original biopsy found stage 2 changes but in light of a low platelet count, there was a suspicion for more advanced liver disease. CT of the abdoment found evidence of portal collateral systemic changes that confirm cirrhosis. The patient has well-compensated disease and strong hepatic synthesis. (Original July 06 CT report said: cirrhotic-appearing liver. 0.9 low dense lesion in right hepatic lobe. No definite enhancing lesions identifified. Portal vein is patent. Negative spleen. A few borderline prominent upper quadrant lymph nodes.) How did he get confirm out of that?
He checked for HCC at this visit. Ultrasound: A cirrhotic liver is demonstrated. Spleen bordline enlarged at 12 cm. No ascites, no neoplasm noted. AFP: result 5 ng/ml (range 0-6) (Keep in mind the Ultrasound tech started with the idea I was cirrhotic.)
Fast forward to May 5, 07. The trial I was trying to get into has my doctor in charge of it (I never see him, though, just the NP). For whatever reason, my Doctor looked me in the eye at "go time" in the trial coordinator's office (796) and after having my July 06 biopsy re-read, he says to me, your biopsy is a 2-1. I started to protest, because I was stunned to hear this, blurting out "What about all the other tests?" He almost cut me off, saying the biopsy is the gold standard. I said "In that case I am waiting to treat and beat it out of there. I took the summer off! Only checked in here once and while and didn't worry. But in the back of my mind...
Here are my thoughts:
Maybe he was actually trying to help me get in to the trial by leaving out results other than biopsy and was wishing I would shut up and not tip off the coordinator. Don't ask, don't tell.
He didn't look at my file first.
He is right. Just because it is cirrhotic-appearing and what does "is demonstrated mean? Maybe he thinks the other guys made a mistake?
There it is. Sorry it is so long? Just like everyone else, II only want to do this one time!
not sure if you ever posted it but what was your "post" tx fibroscan kpa result? hope you dont mind me asking. thanks
MEDICAL PROFESSIONAL
Your fibroscan results places you between fibrosis stage one and two. Good Interquartile range = low variability between accepted shots. Results probably reliable. In the future the actual images should be handed to the patient, so he can show them to another expert on this technique to get a more educated judgement. Just like having a copy of your biopsy slides.
Jim - you see ( above) copy got the median - not the mean, which is the worldwide technique used.
BTW the kilopascal refers to the pressure rquired to stretch an elastic material to 200% called the elastic module or Youngs module. If a material is very stiff or hard, then a higher force is necessary to stretch it that much, so it is a measure of the inherent stiffness of any material, in this case the liver.
Jim, I would certainly agree that you have no real need to redo a fibroscan at this point. Provided you do not have a strong propensity towards NAFLD, which is somewhat linked to metabolic syndrome. An advanced lipid profile using NMR from Liposcience is a much more urgent priority.AND the VAP lipid profile from Labcorp AND a coronary artery scan using Electron Beam Tomography. That will either relieve you or focus you on what might really matter now...All very accessible.
Jim - you see ( above) copy got the median - not the mean, which is the worldwide technique used.
BTW the kilopascal refers to the pressure rquired to stretch an elastic material to 200% called the elastic module or Youngs module. If a material is very stiff or hard, then a higher force is necessary to stretch it that much, so it is a measure of the inherent stiffness of any material, in this case the liver.
Jim, I would certainly agree that you have no real need to redo a fibroscan at this point. Provided you do not have a strong propensity towards NAFLD, which is somewhat linked to metabolic syndrome. An advanced lipid profile using NMR from Liposcience is a much more urgent priority.AND the VAP lipid profile from Labcorp AND a coronary artery scan using Electron Beam Tomography. That will either relieve you or focus you on what might really matter now...All very accessible.
IMHO, I would have trouble knowing what to believe with your results also. There is over a 30% sampling error in biopsies so it is possible to get a better or a worse biopsy score than you actually have. That is one of the reasons serial biopsies are good over time. Also depending on your doc's experiences and the fibroscan and markers in the blood, physicians make an educated guess. Remember medicine is an art as well as a science. Good luck with your decision making process.
Yikes! Should have re-read my comments before I hit post. But then we wouldn't be having such a good laugh. : )
Good one Shecky530!
Good one Shecky530!
Foo: Hopefully I am anatomically correct! I will check with Foresee to get more details.
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If "Forsee" is busy, I'd be happy to check on the 'anatomically correct' part :)
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If "Forsee" is busy, I'd be happy to check on the 'anatomically correct' part :)
HR: maybe you are now just scratching the surface of the 95% intervall for stage 3 fibrosis.
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I can't say I now have a full understanding of the entire process/differences between the two scan techniques, but given the limitations of this forum, your answer was very helpful.
As to the above quote, I'm guessing you are referring to my three year old biopsy results, as opposed to the two scan results? The pathologist who staged it at 2.5 actually took the time to show me the slides in his office and explain why it wasn't exactly a two or a three. What I'd like to think is that now I'm closer to a stage 2 (or even better) based on my second Fibroscan post treatment.
If I had a "need to know" I'd be at your office in a heart beat, assuming you'd see me. However, right now, I'm more comfortable avoiding tests, doctors, and procedures, at least for the time being. Just too much of all the aforementioned during the past few years :)
Thanks again for all your help.
Be well,
-- Jim
-----------------
I can't say I now have a full understanding of the entire process/differences between the two scan techniques, but given the limitations of this forum, your answer was very helpful.
As to the above quote, I'm guessing you are referring to my three year old biopsy results, as opposed to the two scan results? The pathologist who staged it at 2.5 actually took the time to show me the slides in his office and explain why it wasn't exactly a two or a three. What I'd like to think is that now I'm closer to a stage 2 (or even better) based on my second Fibroscan post treatment.
If I had a "need to know" I'd be at your office in a heart beat, assuming you'd see me. However, right now, I'm more comfortable avoiding tests, doctors, and procedures, at least for the time being. Just too much of all the aforementioned during the past few years :)
Thanks again for all your help.
Be well,
-- Jim
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