Dr wont biopsy yet!

Called the doctors office yesterday because I had heard that it is best to get a biopsy no matter what, even though my sonogram was neg, I want to know where my liver is and get this out of the way so I dont have to wait longer for the results. He refused and said to wait for my genotype. Why? is he just being and ***. Can I make him?

[jmjm530]

I think around 70% of all Hep C cases in this country are geno 1's. That's why he thinks Worry probably is.

[NYgirl]

I can't see WHAT doctor wouldn't want a biopsy of a Geno 1 at all and can't imagine what reason there could possibly be.  But he doesn't even know what Geno you are? What DOES HE KNOW?

Considering those are two of the BIGGEST GIANT factors in deciding to treat or not I would love to see what he is going to base this decision on!!!!!!!!!!

It's my understanding from reading (ONLY) that just about EVERYBODY'S ultrasound comes out NEG (i know mine did and I am grade and stage 2 arleady!) so I don't see the correlation AT ALL.  Doesn't the sonogram just tell you if you have tumors or other physical things like that but NOT fibrottic progression?

I'm telling you one thing I would not treat or NOT treat without the biopsy results.  A biggggg difference between a 1 and a 3.

[kesd]

Hi Jim:  yes, I am in the analytical chemistry science field.  The Dr wanted a biopsy for more info..I got the impression from him he also would prefer to hold off on treatment if the liver looked in good enough shape.  I, on the other hand don't feel, at my age of 45, waiting 5-10 years for newer tx is the best thing.  Sooner than later I have menopause to look forward to and I have diabetes (under control).  I would rather treat now knowing I feel ok than wait and not know how I'll feel then....but that is how I feel today.  Also with diabetes I really need to be on a statin (spelling??) drug but my regular Dr doesn't like to treat with those drugs for folks with liver problems.  I have an app't with him after my app't with the liver Dr. I was also left with the impression the liver Dr would treat if I really wanted to even if the biopsy was good....1 step at a time, even though that is not my strong suit!!!!  What you may be thinking of as far as elevated levels is the bit about my PCR's..pre tx was ~3200 IU and the tests during tx were ranging from 20000-30000.  Still waiting for the final quanitative..thought I'd get by now..I'll let you know, not that it matters much now.  I wonder if there are other females out there who unsuccessfully treated at my age and then retreated 5-10 yrs later during menopause.  It's nice to be able to post again and thanks for responding.  Kristin

[worrywortmom]

i have very good insurance and its my body, so why not? Ive talked to someone that also had a neg liver test and found out by a biopsy she has cirrosis (cirrhosis) and she is a geno type 3. I will be very upset it it hold up my treatment.

[kesd]

With me they did not recommend a biopsy, only ultrasound, because my genotype is 3a--with about an 80% response rate. Maybe because some genotypes respond better than others they feel it's not cost effective.  I can understand your anxiety...wait to get your genotype.  Best wishes  Kristin

[worrywortmom]

he said with my past history that i am very likely to be a genotype 1

[cuteus]

many drs will not biopsy genotypes 2 and 3, because they usually respond to tx better and are treated for 6 month only, drs feel that they should treat regardless of liver damage. You can insist on a biopsy, if he does not agree, you can get a second opinion or a third. I would like to know what state my liver is in regardless of genotype!


on another note: I am not sure if you have noticed how peculiar it is to post questions at MH, but they seem to allow about 6 to 8 slots for new questions each day and about 50 slots for comments.  Many folks will tag their next question to the thread they started. and other folks will tag questions to the existing threads when they can't find an open question slot and they need answers quickly.  MH also states somewhere, ( I did not know that one) that a member is allowed a certain number of questions in a certain number of months....I have not seen that one enforced, though.  You can tag as many new questions to your thread as you need!  Don't take it as a criticism, it is more of a tip for the new posters.  Many don't take the time to read the rules, (sort of like me, actually, I don't think I have read them ALL yet, only the part about personal attacks, because I got in trouble a couple of yrs back).;-}
I don't want anyone else to get in trouble...

[worrywortmom]

im sorry I had know idea, as i stated im new at this. Learn something new everyday.

[jmjm530]

If you're a geno 1, I imagine he'll recommend biopsy. Many doctors don't recc biopsy for geno 2's and 3's, they just go ahead and treat. An alternative to biopsy is LabCorp's Fibrosure test or a device called Fibroscan. Unfortunately, Fibroscan is only available in three trial centers including Boston and I believe Miami. Like Kirstin suggested -- one thing at a time -- get the genotype back first.

-- Jim

[kesd]

I don't know how someone could tell what genotype a person might be from past history...unless you know by whom you were infected by and they are genotype 1.  Someone else may know more, as I usually post only personal experiences and not knowledge based stuff. !! Kristin

[jmjm530]

Sounds like you're moving ahead. Let us know when you know things. Meanwhile, as someone in the scientific community, you no doubt no more about drug hopes based on trials -- but the Vertex buzz keeps building. You might want to listen to this morning's Vertex Webcast  supplied below by Milked and draw your own conclusions. To me, very exciting stuff. If things continue to work out, I've heard projections of 2-5 years. Personally, I think 10 years is an unrealistically pessimisic number.
http://www.vpharm.com/audioframe.html

[mistybean]

My doctor would not bio me when I was diagnosed.  I went to another doc and got a bio.  Now I hear that they very seldom bio genotype 2.

[kesd]

Thank you so much for your response.  You hit a lot of my personal feelings/thoughts right on the head...I appreciate your time to post. How are you doing on treatment?  Best wishes   Kristin

[kesd]

Just checked my HMO account and the PCR result was there...
4280 IU/ML...so it's the same.  Thanks  Kristin

[painintheside]

Hello,
You know my history but I will tell it again for those who don't know.

I am a geno 3a and am 33. Probably have had this for 16 years. Had CT scan and ultrasound that both showed normal liver. I had a biopsy because I wanted to know exactly where I was. Found out I am Stage 4/4 and Grade 3/4. No symptoms of cirrhosis, so who would've guessed?

Would not change a thing about getting liver bx. Glad I found out cause normally, they would have treated for 24 (possibly shorter these day) and now I am on it for 48.

SO glad to know where I am at! I can't stress enough (in my opinion), how important it is to get a biopsy!

Sincerely,
Dana

[cuteus]

please share that one as often as possible, new members need to know, that is one scary discrepancy!

be well

[GoofyDad]

What were your blood counts like prior to bx - mine showed lowered WBCs and platelets, both warning signs of liver damage. I'm wodering how many surprise stage 4's show up who had normal CBCs.

[Dweav]

Baylor here in Houston told me that a biopsy is really the only way to tell what state the liver is in. I transplanted 4.5 years ago and have been doing fine told all my levels were good. Then on my four year check up they wanted to do a biopsy. They told me then that they normally watch the blood work and your count to tell when treatment is needed but what they have found in the last few year is that by the time soe people count is to the point that they need treatment that the liver is in late stages and the damage is done. So now that pull a biopsy to see where you are and it the only sure way of knowing and a normal thing they do with transplant people. I'm sure some Insurance companies are going to fight it sooner than later because it going to become what the all want to do.  They just had meetings in CA. over the treatments Pre and Post transplant. So a lot of new things will come out of that over the next year.  I'm going to see them next week so I'll have more news I hope.

Don

[painintheside]

Thanks everyone for the encouragement to share my stats. I agree that it needs to be shared because I wasn't in the " fit the description of".

Goofy,
My wbc were normal but my platelets have ran low for many years (about 140). Bruised easily ( to the point my husband felt stares when we would go out) but mainly on my legs and arms. I beleieve there were signs my doc chose to ignore with just the hep c. But who would've guess cirrhosis at 33?

Sincerely (and lots of love),
Dana

[azgrl]

I am one who can atest to being glad you post your stats.  I was not ging to get a biopsy until I heard your story.  I figured since I had only had hepc for 4 1/2 years and  since it is a slow moving disease I figured well there should be no damage at all.  After getting a fatty liver ultrasound and hearing your stats I ended up getting one and my bx came back stage 1 grade 1.  So I am glad I had mine done as well and I didn't just assume that the disease always moves slow.  Although the damage is not high at this point I can't imagine what it would be in 5-10 more years.

Deb in az

[GoofyDad]

Hi Dana -
Nice to see you. Hope you're well - and you remain able to get by without the growth factor drugs. Take care.