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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!
Good to see you back here.
I have no doubt that a very skilled and experienced operator such as yourself offers certain advantages over a machine-processed algorithms. But two points I have made recently re the differences are that: (1) the machine-processed algorithms reduce the incidence of operator bias/error/inexperience (obviously not in your case): and (2) these alogorithms can be cross-referenced with tens of thousands of others for more reporting uniformity in terms of trials, etc.
I would think then that the "optimum" Scan would be to develop two seprate scores, so to speak. The first score using whatever protocol/alogorithms eventually become accepted nationwide: and then a separate score (or analysis) based on a more individualized technique like you use. Not sure if wer're really in disagreement here, as I believe you mentioned in the past, that once a protocol became accepted, you would probably incorporate it into your practice.
I think this important (including the developing computer protocol) because if Fibroscan does make it "Prime Time", it will be probably be administered by many (in many cases technicians) with far less experience than yourself both in understanding the implications and for some time in administering the procedure.
As to the procedure itself via the protocol. From best memory, they did do around 12 probes in a single spot but threw out the high and the low (or two highs and lows, can't remember) before computing what I believe was the mean. Mention was also made at the time that my ribs width? (and lack of fat in the area) allowed for a very good scan. Had my ribs not been ideally structured, not sure what the protocol called for -- possibly a different location, or merely just noted. Same if my BMI was higher than it was. Apparently the difference BMI's between the American's and Europeans is one of the things the current trial is trying to figure out.
One question. I believe "Forseegood" mentioned that you take scan readings from different parts of the liver. The trial protocol as I experienced was to do all 12 probes in one spot. Again, my spot was apparently a good one given my rib cage architecture and lack of fat over the ribs.
When I asked the operator why don't they take readings in different parts of the liver, I forgot his exact reply but he did suggest that they found the readings to be very close with different probe locations. "Surprisingly Close" might have been the term used.
Well enough theory, which I obviously don't have your grasp of. Again, it's great you saw this post and hopefully you and "FooFighter" will get together if that is in the cards. I think we both agree that some more "work" has to be done to come up with a more confident assessment of FooFighter's degree of Fibrosis, although my guess - and only that -- after reading the conflicting reports by doctor and nurse -- is that her biopsy probably will be correct. But I certainly wouldn't want to gamble on that and hopefully a scan and/or a second evaluation will give her the confidence she needs in her dx to make the right choice moving forward.
All the best,
-- Jim
I have no doubt that a very skilled and experienced operator such as yourself offers certain advantages over a machine-processed algorithms. But two points I have made recently re the differences are that: (1) the machine-processed algorithms reduce the incidence of operator bias/error/inexperience (obviously not in your case): and (2) these alogorithms can be cross-referenced with tens of thousands of others for more reporting uniformity in terms of trials, etc.
I would think then that the "optimum" Scan would be to develop two seprate scores, so to speak. The first score using whatever protocol/alogorithms eventually become accepted nationwide: and then a separate score (or analysis) based on a more individualized technique like you use. Not sure if wer're really in disagreement here, as I believe you mentioned in the past, that once a protocol became accepted, you would probably incorporate it into your practice.
I think this important (including the developing computer protocol) because if Fibroscan does make it "Prime Time", it will be probably be administered by many (in many cases technicians) with far less experience than yourself both in understanding the implications and for some time in administering the procedure.
As to the procedure itself via the protocol. From best memory, they did do around 12 probes in a single spot but threw out the high and the low (or two highs and lows, can't remember) before computing what I believe was the mean. Mention was also made at the time that my ribs width? (and lack of fat in the area) allowed for a very good scan. Had my ribs not been ideally structured, not sure what the protocol called for -- possibly a different location, or merely just noted. Same if my BMI was higher than it was. Apparently the difference BMI's between the American's and Europeans is one of the things the current trial is trying to figure out.
One question. I believe "Forseegood" mentioned that you take scan readings from different parts of the liver. The trial protocol as I experienced was to do all 12 probes in one spot. Again, my spot was apparently a good one given my rib cage architecture and lack of fat over the ribs.
When I asked the operator why don't they take readings in different parts of the liver, I forgot his exact reply but he did suggest that they found the readings to be very close with different probe locations. "Surprisingly Close" might have been the term used.
Well enough theory, which I obviously don't have your grasp of. Again, it's great you saw this post and hopefully you and "FooFighter" will get together if that is in the cards. I think we both agree that some more "work" has to be done to come up with a more confident assessment of FooFighter's degree of Fibrosis, although my guess - and only that -- after reading the conflicting reports by doctor and nurse -- is that her biopsy probably will be correct. But I certainly wouldn't want to gamble on that and hopefully a scan and/or a second evaluation will give her the confidence she needs in her dx to make the right choice moving forward.
All the best,
-- Jim
MEDICAL PROFESSIONAL
What aggrevates your diagnostic situation is the fact, that Ct scans and ultrasounds can only diagnose cirrhosis, when it is in a substantially advanced stage, That puts you in a painful uncertainty that becomes also practically important when decisions re start and intensity of treatment have to be made. There are currently four drugs in development for addition to SOC that hold some realistic promise to improve the SVR chances after the painful SOC, of particular importance for those with advanced disease because SOC SVR rates move lower with cirrhosis, but also for those who can wait - or think they can wait- until such combo will bcome available.
On the other hand you almost got into the HCV 796 trial, that has meanwhile been abandonded, for good reasons, showing the volatility of some of these approaches. ( Not unexpected, that 796 showed ultrarapid resistance BTW).
With reagrd to the fibroscan, it can, if the ribcage is not very narrow and the patient not very obese, obain very precise information re the elasticity of the liver, which is excellently correlated to the amount of collagen fibers (fibrosis) that the liver contains. Some fibroscans fail, because the quality of the elastic wave that can be generated is suboptimal due to operater lack of skill, rib deflections causing wave disturbaces, obesity or (rarely) real wound scarring. The problem - and this comment goes to Jim- is that in the " standardized procedure" the judgement of acceptance of a particular individual elastometric shot or picture is left to the machine and its image processing algorithms. If one understands what the essence of the wave speed measurement is as reflected in the details of the individual image, it becommes painfully clear, that the machine algorith sometimes "accepts" individual single measurements that it should have discarded and also that the speed interpolation tha the machine automatically performs and superimposes on the individual image is not infrquently clearly wrong. This normally is weeded out because only the median of 12 measurements is finally used as "the' reflection of the true elasticity and is the only value that determines the final fibrosis judgement. In terms of repetitions of the "shots" or measurement of individual elastic values, the rule is simple: the more you do, the closer you get to the reality. Just like 10 liver biopsies would give you more info than one and 40 will really focus you into what is truly present - sampling error is increasingly reduced and the reality of degree of fibrosis comes into clearer focus the more "fibroshots" you do.. It is practical reasons that limit the " standardized protocol" and it is more a minimum protocol rather than the maximum precision that you can obtain.More mesurements will only reduce the uncertainty window that a particular median will finally represent. Biopsies are only coarsly quantitative in re to fibrosis - hence the "stages". So the more biopsies you would do( if you could, or do a "wedge biopsy", autsch) and if you would (as some French studies did) quantify the fibers with integrated area measurement of the stained fibrous areas and would in parallel do a number of fibroscan shots to the extent that the median now stays rock solid and you have discarded improper waves, then you would come to a very, very close agreement between the two. In the real world, the uncertainties of both methods will combine to widen the window of correlation. It is however easier to narrow the part than stems from the fibroscan due to its noninvasiive nature.
Thus for foofighters situaion a well done fibroscan - if anatomically possible- would quickly clarify where she is positioned in this scary span between her 2006 biopsy and her radiological assessments of cirrhosis..
On the other hand you almost got into the HCV 796 trial, that has meanwhile been abandonded, for good reasons, showing the volatility of some of these approaches. ( Not unexpected, that 796 showed ultrarapid resistance BTW).
With reagrd to the fibroscan, it can, if the ribcage is not very narrow and the patient not very obese, obain very precise information re the elasticity of the liver, which is excellently correlated to the amount of collagen fibers (fibrosis) that the liver contains. Some fibroscans fail, because the quality of the elastic wave that can be generated is suboptimal due to operater lack of skill, rib deflections causing wave disturbaces, obesity or (rarely) real wound scarring. The problem - and this comment goes to Jim- is that in the " standardized procedure" the judgement of acceptance of a particular individual elastometric shot or picture is left to the machine and its image processing algorithms. If one understands what the essence of the wave speed measurement is as reflected in the details of the individual image, it becommes painfully clear, that the machine algorith sometimes "accepts" individual single measurements that it should have discarded and also that the speed interpolation tha the machine automatically performs and superimposes on the individual image is not infrquently clearly wrong. This normally is weeded out because only the median of 12 measurements is finally used as "the' reflection of the true elasticity and is the only value that determines the final fibrosis judgement. In terms of repetitions of the "shots" or measurement of individual elastic values, the rule is simple: the more you do, the closer you get to the reality. Just like 10 liver biopsies would give you more info than one and 40 will really focus you into what is truly present - sampling error is increasingly reduced and the reality of degree of fibrosis comes into clearer focus the more "fibroshots" you do.. It is practical reasons that limit the " standardized protocol" and it is more a minimum protocol rather than the maximum precision that you can obtain.More mesurements will only reduce the uncertainty window that a particular median will finally represent. Biopsies are only coarsly quantitative in re to fibrosis - hence the "stages". So the more biopsies you would do( if you could, or do a "wedge biopsy", autsch) and if you would (as some French studies did) quantify the fibers with integrated area measurement of the stained fibrous areas and would in parallel do a number of fibroscan shots to the extent that the median now stays rock solid and you have discarded improper waves, then you would come to a very, very close agreement between the two. In the real world, the uncertainties of both methods will combine to widen the window of correlation. It is however easier to narrow the part than stems from the fibroscan due to its noninvasiive nature.
Thus for foofighters situaion a well done fibroscan - if anatomically possible- would quickly clarify where she is positioned in this scary span between her 2006 biopsy and her radiological assessments of cirrhosis..
Jim said: One of our members, NYGirl, felt like she needed outside consultation early-on in treatment, and she saw Dr. J. in NYC. He didn't take insurance, and I think NY paid around $600 out of pocket, but it was well worth the money, according to what she reported back.
It was TOTALLY and completely worth the money. I'm a poor single mom living in a very expensive part of the world and it was VERY difficult for me to come up with the cash however - it was worth every single penny, especially now that I know by having a second opinion with Dr. J. I took his advice to heart and ended up SVR.
One way or the other I agree you need to see about getting clarification of your biopsy results - somewhere. there is such a BIG difference between 2 and 4 stages that somebody better read the report correctly.
I had to pay Dr. J when I got there but I spent hours with them. He will spend as long as YOU want answering ANY and EVERY question you have (some had nothing to do with me but I asked for others here on the forum).
Stick up for yourself NOW it's time! You can do it! IT's totally worth it to see someone you KNOW is totally going to have your best interest at heart. It might take a while to get in to see one of them so call NOW.
Good luck!
It was TOTALLY and completely worth the money. I'm a poor single mom living in a very expensive part of the world and it was VERY difficult for me to come up with the cash however - it was worth every single penny, especially now that I know by having a second opinion with Dr. J. I took his advice to heart and ended up SVR.
One way or the other I agree you need to see about getting clarification of your biopsy results - somewhere. there is such a BIG difference between 2 and 4 stages that somebody better read the report correctly.
I had to pay Dr. J when I got there but I spent hours with them. He will spend as long as YOU want answering ANY and EVERY question you have (some had nothing to do with me but I asked for others here on the forum).
Stick up for yourself NOW it's time! You can do it! IT's totally worth it to see someone you KNOW is totally going to have your best interest at heart. It might take a while to get in to see one of them so call NOW.
Good luck!
I think there are different points to either scenario, as we have discussed....I myself would prefer HR mostly because he surveys much more of the liver (as I understand it) to give you a more individualized scan. But then for comparative results, the other scans would be more preferable, just from what I know, and admittedly, I'm no expert. It's just different preferences from what I can see..
It is possible to come to LA to get the scan, at a very negligible cost, course you arrange your own flight. All you need to do is contact me through my profile.
It is possible to come to LA to get the scan, at a very negligible cost, course you arrange your own flight. All you need to do is contact me through my profile.
Wanted to mention that Dr. Afdhal has a Fibroscan, so that might be my first choice. Perhaps they might scan you for an "in house" study like with Copyman, especially since you would be traveling from afar.
If it's a concern, it is possible to get a second opinion without flagging your current medical team. Of course you will somehow have to collect all your medical records -- blood tests, CT reports, etc -- as well as your biopsy slide set. Hopefully, you have a lot of that in your posession right now.
Don't know if "Forsee" reads every thread, so you might have to post to her separatly, either here or on the other side. I don't want to try and categorize "HR"'s practice one way or another, by my understanding -- and only that -- is that he is primarily a reasearcher who only sees a limited amount of patients. I think he'd be an excellent person to have a scan with and to consult with but I'd still think you should consider getting another opinion for someone in a more traditional, larger clinical/trial practice that where the empasis is more toward treatment (and decisions) as opposed to research.
And yes, no reason you can't fly in -- fly out the same day for that kiind of a consult, so don't really think that a "pit stop" is needed. Here are some recommendations:
1. NYC -- Dr. Ira Jacobsen and Dr. Douglas Dieterich.
2. Boston -- Dr. Nezam Afdhal
3. Miami -- Dr. Eugene Schiff
4. North Carolina -- Dr. John McHutchison
Don't know if "Forsee" reads every thread, so you might have to post to her separatly, either here or on the other side. I don't want to try and categorize "HR"'s practice one way or another, by my understanding -- and only that -- is that he is primarily a reasearcher who only sees a limited amount of patients. I think he'd be an excellent person to have a scan with and to consult with but I'd still think you should consider getting another opinion for someone in a more traditional, larger clinical/trial practice that where the empasis is more toward treatment (and decisions) as opposed to research.
And yes, no reason you can't fly in -- fly out the same day for that kiind of a consult, so don't really think that a "pit stop" is needed. Here are some recommendations:
1. NYC -- Dr. Ira Jacobsen and Dr. Douglas Dieterich.
2. Boston -- Dr. Nezam Afdhal
3. Miami -- Dr. Eugene Schiff
4. North Carolina -- Dr. John McHutchison
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