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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!
Thanks for the feedback. Of course my all-time favorite result is my biopsy : )
I've been a fool not being more aggressive about a second. In spite of all my complaining about my care from current team, I didn't want to make them mad at me or think that I didn't trust them and take worse care of me. And the reason I haven't pinned both NP and Doc down about their difference of opinion, is I want to keep my options open to get into trials. (Trial coordinator at their office is going by the biopsy as far as this polymerase trial is concerned. I haven't heard any more details though.)
In my first posts I went bananas, complaining about them. Jim, Bug and a host of others patiently read my diabtribes and told me back then to get a second opinion. I gotta tell you, after reading for a year and a half, I was so embarrassed about those postings... things that everyone has to deal with. When Bonnie Robin came through, I thought "oh my gosh," you sounded like that! Not that there's anything wrong with that. For me though, I felt embarrassed. Anyway I am back as a more experienced community member/poster now, and hopefully a more mature patient.
I spent time online last night trying to find "the best hepatologist in Minnesota" and didn't come up with a long list. Looks like there are some great docs at U of M, but they are in the transplant center, not hep clinic. Don't know if they will see me, but insurance told me I could get a referral. I just had a sister of a friend pass away there (hep c). I am going to give her some time and then contact her about Tawn's care. (Google Tawn Mastrey to read about a great lady who fought till the last minute)
The Fibroscan trial coordinator in St. Louis actually suggested seeing Dr. Bacon at his center. Said he was fabulous and his name came up on a best docs list last night.
And if necessary I will find the money and I am willing to travel. Foresee, does HR do second opinions as well as scans? Is he in San Diego? I have read every one of his posts over the last year and his knowledge blows me away. Don't understand some of them, but I copy and paste most of them into my database.
I have friends/fam in San Diego, LA, Chicago, and Vero Beach FL, where I could stay or make a pit stop at to save a few bucks. And I would imagine you send all your stuff ahead, so the second opinion is just a short office visit, right?
Thanks in advance to all.
I've been a fool not being more aggressive about a second. In spite of all my complaining about my care from current team, I didn't want to make them mad at me or think that I didn't trust them and take worse care of me. And the reason I haven't pinned both NP and Doc down about their difference of opinion, is I want to keep my options open to get into trials. (Trial coordinator at their office is going by the biopsy as far as this polymerase trial is concerned. I haven't heard any more details though.)
In my first posts I went bananas, complaining about them. Jim, Bug and a host of others patiently read my diabtribes and told me back then to get a second opinion. I gotta tell you, after reading for a year and a half, I was so embarrassed about those postings... things that everyone has to deal with. When Bonnie Robin came through, I thought "oh my gosh," you sounded like that! Not that there's anything wrong with that. For me though, I felt embarrassed. Anyway I am back as a more experienced community member/poster now, and hopefully a more mature patient.
I spent time online last night trying to find "the best hepatologist in Minnesota" and didn't come up with a long list. Looks like there are some great docs at U of M, but they are in the transplant center, not hep clinic. Don't know if they will see me, but insurance told me I could get a referral. I just had a sister of a friend pass away there (hep c). I am going to give her some time and then contact her about Tawn's care. (Google Tawn Mastrey to read about a great lady who fought till the last minute)
The Fibroscan trial coordinator in St. Louis actually suggested seeing Dr. Bacon at his center. Said he was fabulous and his name came up on a best docs list last night.
And if necessary I will find the money and I am willing to travel. Foresee, does HR do second opinions as well as scans? Is he in San Diego? I have read every one of his posts over the last year and his knowledge blows me away. Don't understand some of them, but I copy and paste most of them into my database.
I have friends/fam in San Diego, LA, Chicago, and Vero Beach FL, where I could stay or make a pit stop at to save a few bucks. And I would imagine you send all your stuff ahead, so the second opinion is just a short office visit, right?
Thanks in advance to all.
As stated, I tend to agree with the others regarding biopsy over scans (not including Fibroscan). However, I don't feel qualified to fully understand the valididty/ significance of your CT report and therefore my advice to seek that second opinion which hopefully will agree with your doctor and the biopy showing stage 2.
As to Fibroscan, my scan was several years apart from my biopsy, so maybe I was included in one of those "in house" studies, don't really know, but it's always worth asking. Or maybe try another trial center, or "HR", if you're in the mood to travel. However, given your recent biopsy, a confirming report by a good hepatologist may be all you need.
-- Jim
As to Fibroscan, my scan was several years apart from my biopsy, so maybe I was included in one of those "in house" studies, don't really know, but it's always worth asking. Or maybe try another trial center, or "HR", if you're in the mood to travel. However, given your recent biopsy, a confirming report by a good hepatologist may be all you need.
-- Jim
same here, ultrasound showed noyhinh, cat scan a little, biopsy was stage 3/4
I'd trust the biopsy, the others are reading machine that don't show the bridging, If they can't pick it up, what good are they...ok, so a cat scan show a little, but mainly just organ sisze and fluid retention,,,helpful in knowing that you are sick, if spleen.liver are enlarged, etc...but still doesn't tell you what stage and whether to treat. Biopsy gave best info, making decisions possible.
hope that helps
I'd trust the biopsy, the others are reading machine that don't show the bridging, If they can't pick it up, what good are they...ok, so a cat scan show a little, but mainly just organ sisze and fluid retention,,,helpful in knowing that you are sick, if spleen.liver are enlarged, etc...but still doesn't tell you what stage and whether to treat. Biopsy gave best info, making decisions possible.
hope that helps
i had a similar experience when i went to visit dr A in boston. i was scheduled for the fibroscan and right before i was to travel 6 hrs to boston was told i needed a bx within 6 "months". jim helped me by pointing out that the bx can be 6 months before or AFTER fibroscan. so i scheduled a bx with my local doc just so i could get the scan. my intentions where to cancle the bx after getting the scan because the whole idea of me going to boston was to get the scan and AVOID bx. when i got up there they told me the new criteria was 6 weeks and my scheduled bx was like 6 1/2 weeks later. they knew how far i traveled so they said they could give me the scan for their "in office" study. so my point is that they could still give you the scan either by you scheduling a bx with option of changing your mind after scan or doing one as an "in office" study.
PS i ended up having the biopsy. i found the results to be close to the scan & fibrosure. all done within one month of each other
biopsy stage 1 grade 1
fibrosure stage 0 grade 1
fibroSCAN stage btwn 1 & 2
PS i ended up having the biopsy. i found the results to be close to the scan & fibrosure. all done within one month of each other
biopsy stage 1 grade 1
fibrosure stage 0 grade 1
fibroSCAN stage btwn 1 & 2
Just to give u my own experience, maybee will help u somehow.
Less then 1 yaer ago I did: Fibroscan said stage 4, Fibrotest said stage, and then I did biopsy said stage 2-3. 3 doc, 1 of them very well known hepa said they only believe in my case to the biopsy results. I should say that my case is somehow unique since I have had liver resection in the past due to an injury.
From my experience, biopsy is the most accurate indication for our liver.
status.
Hope I helped somehow.
Less then 1 yaer ago I did: Fibroscan said stage 4, Fibrotest said stage, and then I did biopsy said stage 2-3. 3 doc, 1 of them very well known hepa said they only believe in my case to the biopsy results. I should say that my case is somehow unique since I have had liver resection in the past due to an injury.
From my experience, biopsy is the most accurate indication for our liver.
status.
Hope I helped somehow.
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. NYC is a pricey market, so hopefully it will be less where you live. So, if it were me, I'd find the absolute best hepatologist you can, spend the money for a one time consult, and take it from there. It seems relatively straightforward. You have a recent biopsy and a number of procedure reports/scans, etc, that suggest at least to a nurse that your biopsy may not be representative. A good hepatologist should be able to look at all that and give you some answers that make sense..
All the best,
-- Jim
All the best,
-- Jim
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