Aa
Aa
A
A
A
Close
Avatar universal

Problems with biopsy results

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
33 Responses
Sort by: Helpful Oldest Newest
Avatar universal
I did not have those sides to that extreme. Yogurt always helped my nausea, plain yogurt. There are suppositories for the vomiting you can use. Headaches, I only had it for about two wks, but some here have taken meds that helped them. The depression, I did not take ADs, but if you feel it can help, I heard Lexapro is liver friendly.  Tell the doc you want to be free of hcv and need his help to finish. If not, my PCP always stepped in when the GI wouldn't. You should not have to suffer so much.  I took vicoprofen for pain and it helped intestinal problems and cramps.  But it might not be for everybody.  My skin bothered me the most at the end of tx, dry, splitting skin. It is hard to hang on, but maybe staying in the house day in and day out is making things worse. My days off from work were a nightmare of self pity and moping around. I rather be a zombie at work.  See what you can do out there, maybe volunteer at your convenience, go for a dip at the Y pool, anything.  
I hope the doc has a heart.
Helpful - 0
Avatar universal
oh Brooke I am so sorry your getting kicked around from this damned virus...I sure hope the Doc calls you back real soon and you can get on some AD's...

*a big hug for my favorite brooke - the dip*
Helpful - 0
Avatar universal
Cuteus thanks for your response. I'm having every side you can name (headaces, nausea, and vomiting), but the one that is really starting to bother me is the depression. I am beginning to feel like there is no end in sight and I don't know how much more of this I can take. I'm just tired of it all. I'm off of work and I'm bored and starting to feel sorry for myself. I'm beginning to think that its just not worth it all. I called my doc today to see if I can get some depression meds and I'm waiting for his call. I'm going to try and hang in there as long as I can but I don't know how much longer that will be. I'm on week 26/48 and I'm tired. Any encouraging words will help. Also do you know if the depression meds will probably help me?

Vegas777, Hey Beth glad to see you back, I was worried about you.

Brooke
GOD BLESS
Helpful - 0
Avatar universal
Hi Brooke, it's me, *da dip*...

I was absolutely shaocked when I read this thread...It is sinful that they expect you to just say "okay, you screwed up so I guess I will another bx"...

Please talk to a seasoned radiologist before you go ahead and have another one, ask his/her opinion of doing this while on tx...

Beth
Helpful - 0
Avatar universal
ASK him to help you with the sides! they can be managed so you can finish. In this era, no one should be quitting because of sides unless they are life threatening.
What is the side that bothers you the most? Is it treatable? ask him to do so>
best to you
Helpful - 0
Avatar universal
First I want to thank everyone for the information you guys have given me. I went to the doctor and unfortunately there was a mistake at the lab and some of the biopsy samples were misplaced and some even destroyed. All in all they want me to have another biopsy, but the doc did suggest that I wait until after tx is finished so that the results can be accurate. However they are going to give me a blood test and see if my tissue sample is still available, and if they can match it up. If not then I don't know what to do. I guess now I can't end treatment. I see the actual doc in 2 weeks so I'll have more information then.
I still don't know what to do. I really want to quit tx, but now I'm scared to. I don't know how much damage there might be. The doc told me since I've only had the virus for 7 years and a low vl prior to tx 208,000 I shouldn't have significant damage, but with this virus you never know. I just don't know what to do.

Brooke
GOD BLESS
Helpful - 0
107513 tn?1232286464
The pre op blood test, that ALL medical centers run are as follows:
CBC, PT, PTT, and a typing cross.
PT and PTT are clotting factors, and typing cross is to determine blood type..

As I stated above, who among us has "normal", or "within" range levels while undergoing tx. The patients chances of bleeding, scarring, and infection are greatly increased while on tx.
Helpful - 0
92903 tn?1309904711
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.
Helpful - 0
Avatar universal
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
Helpful - 0
Avatar universal
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
Helpful - 0
Avatar universal
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?
Helpful - 0
Avatar universal
well, it might be that the Madre Patria is far more advanced than the ethnocentric US! It seems as if the two tests combined, Fibroscan and Fibrotest, give the most accurate correlation to bx, so maybe they can add the latter to the mix. It looks as if the scan will stage but not grade the HCV activity in the Liver, which might or not make a difference in tx decission. If you are staged at one and grade 4, it is pretty close to a two and could persuade someone to tx. If the scan shows stage one, it has a nice sound to it, but, to me, I want more than just stages, I want DETAILS. That is just me.  
Helpful - 0
96938 tn?1189799858
I was not referring to all CBC levels.  I was referring to to the tests that Drs. require a few days before a procedure, whether a biopsy or a colonoscopy etc.  My doc explained that they want to make sure that a patient is not a bleeder.  I agree that, in general, CBC is whacked out during TX.  I think that the intent was to re-do the biopsy to determine fibrosis/cirrohsis level and not necessarily inflamation. I also would not risk elective surgery during TX, but  I guess I still don't see why a biopsy during TX is so 'out there'.  I haven't been able to find anything on the subject.
Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
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
Helpful - 0
Avatar universal
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.
Helpful - 0
96938 tn?1189799858

Assuming the pre-biop blood (like plats, WBC etc) were in range why would a biop during treatment not be a appropriate?
Helpful - 0
107513 tn?1232286464
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.
Helpful - 0
Avatar universal
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
Helpful - 0
Avatar universal
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
Helpful - 0
Avatar universal
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
Helpful - 0
Avatar universal
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
Helpful - 0
Avatar universal
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
Helpful - 0
Avatar universal
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
Helpful - 0
2
Have an Answer?

You are reading content posted in the Hepatitis C Community

Top Hepatitis Answerers
317787 tn?1473358451
DC
683231 tn?1467323017
Auburn, WA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Answer a few simple questions about your Hep C treatment journey.

Those who qualify may receive up to $100 for their time.
Explore More In Our Hep C Learning Center
image description
Learn about this treatable virus.
image description
Getting tested for this viral infection.
image description
3 key steps to getting on treatment.
image description
4 steps to getting on therapy.
image description
What you need to know about Hep C drugs.
image description
How the drugs might affect you.
image description
These tips may up your chances of a cure.
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.