Problems with biopsy results

[Healed24]

Hello to all. I have a question that I hope you guys can give me some advice on. Yesterday I got a letter from my docs office telling me that they want me to come in for another biopsy. The hospital where I had my biopsy done may have mixed up people's results during the time I had my orginial biopsy. I am on week 26/48 and I was seriously considering quitting treatment because I am having a terrible time with the sx. I thought I was Stage 0/Grade 0 (from orginal biopsy results), had a low vl prior to tx 208,000 and cleared at week 11 (Oh, by the way I'm geno 1A, had virus for 7 years). With those stats I thought I would have a good chance at SVR even if I quit early, but now I'm unsure because I may be a Stage 0/Grade 0 and I could have significant damage.

I wanted to ask you guys if I should let them do another biopsy, and how reliable will be since I've been on tx so long? Do you think it's just too late and I should just forget and stick with treatment until it's over? Eventhough I think it may be too late I really want to know how much damage (if any) I have.

Thanks to all.
Brooke

GOD BLESS

[cquest]

I believe it...they screw stuff up all the time...look at how many women have pap smears or mamograms misread and die of cancer? I saw them mix up a CT scan, tell somebody they had something awful, call them back and say 'oops,sorry'. What about the poor guy that really had something wrong with him? Did he ever get the right reading? Or is he walking around thinking everything is fine? Very scarey...

And if everything is all mixed up, they'd have to do DNA testing on every sample till they found a match and doesn't DNA take a long time to get results? 6 weeks or something like that? probably expensive too and at their own expense...look how long it took them after 911...long time...Plus why are you getting a bx during tx like someone said above? Isn't that risky?...oye...
Cin

[derail]

U know how to write HUH I saw that too and i thought that sounds likea fisherman i know
BTW email me

[Snookmiester]

I'll try to drop ya a line!!
I just wish they published my leter in it's entirety, not edited. He even corrected himself by stating that "it is thought that sexual tranmission be almost zero"..Funny, I sent him the article. I sent him articles contradicting EVER statement he published, and evidence discrediting him..
But it okay, HE took notice..
Like the OOB gang always says, "awareness starts with just ONE"

[GoofyDad]

Good God!

I'm floored. I don't know what to say.

Here's one thought - just for starters. If this were a crime scene and you left a biopsy size piece of tissue behind, they'd sure as hell find a way to pin that tissue to you. Genetic testing would be used to figure out what bits belonged to whom.

[Snookmiester]

Love to meet the Dr, or medical institute that would ATTEMPT to do a biopsy while the person is undergoing tx... That is a lawsuit and bad situation in the making!

Like Goof said, it's tissue.. DNA and all. And all hospitals are required to keep specimens for a few years. Ask them for slides, and ask them to DNA test.

[Snookmiester]

Everybody knows how I write letters, right? Well, one caught somebodies eye, and was published.. Of course the second paragraph has been falsely chopped and edited to suit THEIR needs, but most statements are CLEARLY my blogs.. Goes to show that if you write, SOMEBODY will eventually listen.

Check it out....


http://www.hcvadvocate.org/news/newsRev/2005/NewsRev-125.html#6

[dammitjanet]

Funny - I saw this recently, and just had a sense it might be you.  Maybe there's more of "us" in our words than we even realize.  Way to go!  Set 'em straight!  DJ

[Healed24]

I'm not exactly sure what happened at the hospital or when they want to do another biopsy I only received a letter from my Doc's office yesterday. So if I understand you guys right, there is no way they should be doing another biopsy while I'm on tx? If so do you know how long I should wait and have one after tx? Even if they retest the samples, I'm not even sure I'll believe them now. And, what should I do about quitting tx now? I'm so confused.

Brooke
GOD BLESS

[cquest]

Don't take anyones advice here w/o asking your doctor or another doctor...What you get here are just opinions of lay persons that happen to have knowledge about this disease because we have it and care about each other...
Cin

[wMich]

Hello healed24,
I'm thinking you should stick with treatment if at all possible. If there WAS a mix-up in your bx results, the correct results could only be 0/0 or worse and you already chose to treat your HCV thinking you had minimal liver damage (0/0). I'm told that 1a's that "clear" at 12 weeks and follow the med regimen for the duration (in your case 48 wks) have a good chance at SVR. I'm in week 15 and hoping for just that myself. I know that quitting early or deviating from the regimen only decreases one's chances at SVR. Hang in there, you're halfway home!
  - Lee

[scubadiver30]

hello everyone
Sorry to barge in. I got my FIBROSCAN today. No need to do fibrotest (doctor dixit)
Stiffness (KPa) 3.4
IQR 1.0 KPa
CS 3.2 KPa
Success rate 78%. I guess my other doctor had Xray vision after all. I'm F0-F1 according to the Metavir scale. I was told to come in next year (with new blood panels, another eco and another genotype yet). The new doctor he wants to verify the 2 genos thing,said that I shouldn't tx just yet. So I guess I'm gonna wait 1 or 2 years. I asked for bx he said no. The third doctor that says that :-(...Let see what happens.
Thanks for everythin. You are all in my prayers

saludos from Spain

[FlGuy]

Assuming the pre-biop blood (like plats, WBC etc) were in range why would a biop during treatment not be a appropriate?

[azgrl]

I would go in and have them verify that the letter was really supposed to be for you or did someone get that mixed up too?

Shouldn't a notification like that be done in person or at least over the phone with the realization that the recipient will certainly have questions?

Deb in Az

[cuteus]

What are the sides that have you at your rope's end? The doc should intervene aggressively in order for you to successfully complete tx. The many withdrawals from tx are due to uncontrolled sides. If they are not life endangering, they should be taken are of by the dr, with Procrit if anemic, pain meds if aches, nausea meds if that is the one bothering the most, etc. You are vested this far, you should be given the opportunity to succeed and rid yourself of this insidious disease. Demand intervention by telling them that quitting is not your first option.
Try to think of tx as the time passed instead of the time left, mentally is more of a positive thinking and makes you feel better to know that you have 24-25 wks down instead of how much you still have to go.  Next Summer you should be posting your SVR PCR, not still thinking of what to do with HCV.

[jmjm530]

Glad to see you got that second opinion AND Fibroscan AND all so fast. Hopefully, the geno thing will be straightened out next time you test. All the best

-- Jim

[cuteus]

forgot scuba!  What is the thinking behind all these biopsy denials?? That is so odd that no one wants to do a bx, maybe they don't feel confident enough? In the US most of the biopsies are done ultra sound guided by an experienced radiologist. Maybe when you go to verify the two genotypes diagnosis, you can mentioned that you will want an actual sample tested for damage evaluation. Someone here, omyst, had a bx that showed no damage, the fibro test showed advanced damage and a 2nd bx showed what the first one did. Quite a difference in results. Maybe it can happen the other way also? In any case, MUCHA SUERTE en tu busqueda de respuestas.

[jmjm530]

Some good previous comments. I'm also not so sure (one way or another) about a mid-tx biopsy. DNA testing sounds the most elegant, but not sure if TV's sexy Jordan is on call for the rest of us :)

One thought is to try and corroborate your biopsy result with some of your pre-tx blood markers. Platelet count, ALT/AST ratio, Pro-time and others can give some indications in the hands of an experienced diagnostician.  Also, there is a non-evasive test called Fibroscan available with Dr. Schiff in Florida, Dr. Afdhal in Boston and I think one other center in the East. Under your unique circumstances, a good letter from your lawyer hopefully will get you a first-class seat on a plane plus all trip and med expenses paid to get this test. And either of those two doctors (Schiff or Afdhal) will also be an excellent second consult.

All the best.

-- Jim

[Snookmiester]

Who here, or anywhere....has had "within" range CBC's while on tx.. I'm very young in comparison to most of the heppers around these boards, and I was advised not to even have mild surgery like going to dermatolgists because of the chances of infection, bleeding, and the bodies inability to heal as fast.

Besides that, the biopsy would not be accurate. The interferon and Riba actually CAUSE mild inflamation, and can throw the readings off. That is why most Dr's advise patients to have pre tx biopsy, and then one no sooner than 6 months post.

[scubadiver30]

Hola
So what you're saying is that I shouldn't take that Fibroscan test as at least 90% accurate? hhmm shoot. I really thought this device was the equivalent of a 4D ecograph like the ones they use now for pregnant women. Well, I guess I'm gonna have to take a little trip to florida and ask for a real good ol 'bx

Abrazos
scuba

[painintheside]

I agree with cuteus. I think it is sooooo important to have an actual biopsy done. Go for it.....you probably won't regret it. I sure didn't (even though it came back bad for me).

And for the other.....ask for second opinions from some other doctors and maybe see if dna would work in this case.

Sincerely,
Dana

[scubadiver30]

So I wonder. What about punctured lungs, bleeding liver and all the things that can occur in the organ with every intrusive procedure? The problem that I see here is that most spanish doctors do the biopsies in what they consider moderate to grave cases (with symptoms and major changes in blood stats) Not in the early stages. I have already gone to 3 different doctors. They don't know each other adn they and they said the same thing. :-(
Could it be there's a difference in protocol between Europe and US?

[jmjm530]

You've been to three doctors and they all said the same thing -- no biopsy needed. The first doctor probably based his diagnosis on blood tests and the way you presented himself. It was later confirmed by Fibroscan. You're also a geno 2 which may be part of the equation.

Regarding Fibroscan, you (Europe) are ahead of us here. We only have three Fibroscan units in the United States but some doctors are very optimistic that if the trials here pan out like in Europe, Fibroscan will eventually start to replace needle biopsy.

It should also be added that some doctors here use Fibrosure -- a test similar to Fibrotest -- instead of needle biopsy. The test you took -- Fibroscan -- is superior to Fibrotest according to some studies.

Apparently the biopsy protocol is different in Spain, so
what I'm thinking is that you should give serious consideration to following the advice of your three doctors unless you want to go to a different country, find a doctor there, get re-evaluated, and perhaps biopsy there, if that is what they suggest.  

Don't know the biopsy technology/philosophy in Spain, but if yor thre doctors are hesitant, so would I. The only thing I might suggest is to confirm Fibroscan with the blood marker test Fibrotest. There have been some studies lately that show that Fibroscan combined with Fibrotest correlates the most accurately with needle biopsy.

Good luck whatever you decide and just remember we all try our best here but none of us are doctors and none of us have examined you.

-- Jim

[jmjm530]

I was about to say, many doctors here will reccomend treat geno 2's regardless of biopsy or fibrosis level (shorter course, higher success rate) -- but on re-reading your original post, I realize you've been dx as a dual genotype, so for tx purposes, I suppose you'd have to follow geno 1 protocols to play it on the safe side.

-- Jim

[GoofyDad]

Brooke,
I've been thinking about you. Please keep us posted. As Jim alluded - they messed this up and owe you every effort of making it right. Whether that means you should speak to a lawyer (not sue them, just learn your rights/options), or the Chief of Medicine, or whatever. Mistakes have been made and you need an advocate to make sure someone is  righting the wrongs.