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Avatar universal

Liver Biopsy and I've Missed You All

Hello Friends!

This will be posted on both the Medical Community as well as the Social Support, as medical discussion and support is being sought.

A long break has been taken from here, and for that I apologize.  A lot has been on my mind, and well... I just needed to take some time to enjoy life before deciding on what to do... My stats are in  my profile. (For those not remembering me.) My hepatologist typically treats a 2b WITHOUT a biopsy. (??!!) I said, "No".  Originally I considered waiting to have my biopsy taken at the end of this summer (as some of you may remember).  Because of my reluctance in starting treatment, and expressing my desire to wait a few years, he ordered a biopsy.  

The liver biopsy wasn’t as big of a deal as I anticipated.  It was ultrasound guided.  A light sedation was given.  (I don’t know what it was, I was totally awake but RELAXED!).  Actually the shot given to numb the area hurt more than the procedure itself.   Tiny slivers from three different areas of the liver were remove.  (Why?  I don't know.) That just felt like a dull pressure.

I asked that the results be faxed but instead the nurse practitioner emailed me with this:

NURSE PRACTITIONER: "Dr. **** advises your biopsy results will be discussed with you in detail during your March 28th appointment.  Briefly, I can state this:  Stage 0-1 minimal scarring (no significant fibrosis) w/Grade 1.  Feel free to call me after 3:30 on Monday.  And, in answer to your question, yes, he still would like to discuss treatment."  

Does this make sense?

I hope all my friends here are doing as well as can be expected.  Each of you have continued to be in my thoughts!  

~Anwaar
29 Responses
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250084 tn?1303307435
You realize you can never change your eye pic (tho it gives Elaine the creeps:)
as these guys are infatuated with that eye, LOL. (Bill:)

I haven't been on much lately either but .....GREAT bx! And so glad you got one! I am in the group of always get a bx before deciding to treat.(think I said that to you before)  With the fact stated above .."you have some time'....that is true. With 0-1 bx it gives you more time to research, decide. A 'for instance' ....as geno 2b, my decision to treat now was the bx results or we were waiting for triple therapy, shorter tx, etc. With so many 'around the corner', more options there. I do also understand the wanting it done and behind you thoughts as well. I am soooooo glad it is behind me and that I didn't have time to think about it all much (dx, bx and in tx within 4 mths time!) but I was stage 2-3 (1-6 scale) so all points above are good ones. You are lucky to have some time to think it out (not meaning 5 years, lol!) You ALSO have the young thing going for you :)

So, along with 2b, your situation really just got even better! Tough choice's but you'll make the right ones for yourself. When you do tx...I'll be around to coach you on, as all did here and got me to 24!

P.S. We all need breaks from 'Hep'.... I just took a few days :)

LL


Helpful - 0
87972 tn?1322661239
FL—

Thanks for the new perspective; I just did the math and you’re spot on… ¾ of the way exactly. Who else could find the bright spot in week 78 :o)?

How are you faring yourself, my friend? I hope all is well with señora y señorita FL too, and you are getting your golf shoes out for an occasional game.

Take care,

Bill  
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96938 tn?1189799858
Good to see you, Bill.  I see that you are about to careen by week 78.  Being three quarters done has a nice ring to it.  Hope you are well.
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87972 tn?1322661239
Hi Eyewaar,

I saw you staring in on me, and thought I’d say hi. It appears from your results that you can pretty much deal with this in any number of ways; most importantly, you have time on your side to make decisions that you’re comfortable with. You are a wise one, and I applaud you for thinking this through- whatever decision you make will be the right one for your own situation, I’m sure.

I haven’t been posting or even reading in here much lately, so it was nice to see you in here. I thought I saw a photo in your profile a few days ago, but it vanished, or I just dreamed I saw it maybe? Was that you, or a facsimile like your eye :o)?

In any event, good to see you, and stay in touch- OK?

Take care,

Bill  
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Avatar universal
Deb, thank you!  You've become special to me and I love that you have referred to me as 'dear one' in your last couple of posts... families sometimes give one another titles and you've always had a way of making me feel special.  I left a public journal post and will be absent from here for a short period.  You, as well as all members will be in my prayers.

~Anwaar
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Avatar universal
Keep us updated my dear one!     great results!

Deb
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Avatar universal
Thanks so much!  It, indeed, was great news... a big sigh of relief.  
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179856 tn?1333547362
Well you couldn't have done much better on that test no matter how hard you studied!  Great results - boy oh boy just wonderful news!

Congratulations!
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Avatar universal
Okay ladies!!! Thanks....

I'm continuing to learn.  Taking everything into consideration, and looking forward to seeing the liver specialist on the 28th of this month.  The decision is not 100 % made.  However, at the moment, I'm considering putting treatment on the back burner.  Perhaps waiting for geno 2 PI European studies... see how that pans out.  Also there is the Accelerate study to consider - the 16 v 24 weeks.  There's heaps of good information here as well.  If I were the anxious type and freaked about the virus, I'm sure I'd just jump into treatment and get it over with, and set my mind at ease.  However, I'm feeling pretty relaxed after the biopsy.  I'll see what the specialist has to say, at the end of the month, and will hopefully be able to explore treatment decisions in four or five years.... but I will keep you posted.
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154927 tn?1205242851
Your bx looks pretty good..no rush for you.  But I wish you the best of luck in your decision, and it IS a big decision.  After you finish weighing the pros & cons, I'm sure the right choice will come to you.
-E
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Avatar universal
Thanks Elaine,

Although, I believe my mind is made up to take the watchful wait approach, I'm not one hundred percent sure.  I will take everyone's views and consider them between now and my March 28th appointment with the hepatologist, and of course, will take his suggestions/recommendations into consideration.  I'm feeling pretty calm and the anxiousness of diagnosis has subsided with the biopsy result.  I know there is no emergency and there will be time to make a decision that I can feel comfortable with.  It is a shame we have this virus and getting to know one another under these circumstances.  I'd taken a few weeks break from here, and was looking for you when I got back!  And here you are!  I appreciate your support, Elaine, and hope you and your son are well.

~Anwaar
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Avatar universal
Indeed I do!   The prize is important!

I do have a wonderful family,  at home and some wonderful friends here!


Have to go get another CBC today, I keep crashing out!  

Blast it  anyway!  I wish it would settle!

Ditto Kiddo
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Avatar universal
The feelings are mutual!!!  I'm glad things are at least 'ok'.  It could never be really great on treatment.  However, I'm sure if you keep your eye on the prize, you will get through it.  And I continue to pray this time will work for you!!

On another note, family first is the best.  It is great that you're taking weekends/eves with them.    Looks like you've created a good balance between your family at home and your forum family.    

I appreciate you, Deb.

~Anwaar
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Avatar universal
You make me blush!  

Things are going ok,  RBCs WBCs s, hemo still bouncing around.  But I ll get there in the end!  

I usually take weekends and evenings off the forum, family time,  I am just so happy to see here!   i missed you!

Deb
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Avatar universal
Deb!

There you are!!!  Thanks so much for your response and welcoming me back~  And, I've been thinking of you as well!!!!  

I'm hoping and praying that everything goes well for you this time as well.  You certainly have a dose of positivity that you freely pass around and is so appreciated.  

Stay strong!

~Anwaar
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Avatar universal
Hello dear one!

So nice to see you here,  Think of you so often!  

It is a stressfull situation, deciding on what to do.   I do think you were wise to walk from the forum for awhile.  It can be negative and confusing. So many opinions.  

It can also be so supportive also,

The right answer will come to you, so I won't try and sway you one way or the other.

Just wanted to welcome you back!

Huge hugs and prayers!
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Avatar universal
Maybe I haven't been following things that closely, but I don't remember you ever discussing your neuropathy prior to treatment. What makes you think it wasn't caused, or at least flared by the interferon?
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One of the reasons I went to the Rheumy was because of my fear of Cryo (which IMO I def have) and the leg swelling and tiny bleeds were the biggest tip -off to me, but also my thumb and the coldness, and slight numbness/tingling I experienced. When I had gone to him, I mentioned I would get some numbness and tingling, not horrible or unbearable, but it was there. He fluffed it off cause I said it wasn't bad i guess (which ticks me off), but it was there and I was concerned and thought it was indicative of Cryo-same as the bleeds. Jim, its not neuropathy like the horror that some have,,,but I am so in tune to my body that I really am very good at noticing symptoms and FINALLY these doctors are acknowledging this about me and that its not in my head....but anyhow,,,,when I felt my relapse,,that night, is when I really,really experienced intense numbing, tingling etc - totally amplified what was already there. My opinion was it was a war between my immune system and the virus and the neuropathy exploded so to speak.

Now, here's the thing, AFTER tx, yes it was very pronounced -it was in my feet then too. In time it started to settle down and would hit me just time to time, also still was in my feet/legs. Now, the place I am at is the tingling and numbness is there, but again, not a constant and I haven't felt it in my feet/legs for a while - I think its gone. And when I say it hits me when I type or play the piano, its not the instant I sit down, it comes after a while of using my hands.

When the neuro doc did the test (forgot the name of the test - sticks needles in and watches the screen as he stimulates the nerves), first thing he said was "are your hands always this cold?" And I said yes, most times. He had to get this thing to stick them in to warm them first. Then when he started doing the test, it seemed all was well and then when he got to a certain point of the test, he said,,,yes, you are correct, you do have neuropathy and also carpal tunnel. The neuropathy isn't a bad case yet and hopefully it will never be, but he said if I start to get it down my legs (which as mentioned only happened for a short time post tx) to make another appointment. I will be seeing him after tx is thru to get another check up anyhow.

But anyhow, I truly believe I brought the Cryo/neuro on by myself. I know that sounds hard to believe, but I know in my heart it is true and my theory has perked a few of my doctors ears when I mentioned it cause I have believed this all along. Just prior to my dx, I had a situation in my family that was very difficult for me to deal with and when I can't 'fix something," I really have difficulty getting it off my mind,,I believe the unremitting chronic stress caused the Cryo which was the very beginning of the slight neuropathy I felt. I knew it in my heart once I was dx and believed I had Cryo (and knew I caused a cortisol problem at that point). So I searched and found that unremitting stress is perceived by the body as an 'antigen.' So anyway, as you know, Cryo comes about because of antigens (viruses, toxins, probably parasites too),,,BUT I figured IF stress can be percieved as an antigen:) ,,- not the normal every day stress - I was losing it, really bad shape, couldn't control the situation that went on for months,,,,but anyway, getting back to that, my hcv dx on top of what I was already going thru nearly destroyed me. The hepc dx stopped my menstrual - was told I had hep and the next month my period never returned.I know it was cause of the shock to my mind - which then shocked my body... I know there are plenty of people that might think all this is not possible, but I am putting this out there just incase it helps even ONE person to try to take control of their thoughts, cause my negative thoughts, fear and worry did me in. I lost control and lets face it, sooner or later we come back down to earth, but by then maybe alot of damage could have been prevented if we wouldn't have let our emotions win. I am way too nuts about things at times (I'm sure you noticed) and I really have to learn to relax. I've mentioned before that I always thought OCD was a made-up syndrome,,but after all of this, and seeing more of myself, I think I have it - real bad case too. My gyno said she thinks alot of it is menopause and she sees it all the time with woman, but I think its a little of everything.....But anyhow, thats my long winded story and believe it or not, there is more, but I will end here, finally.

I have to run, but see ya later.
MO

Anwaar, whatever you decide - that is the 'right choice,' cause its 'your choice,' and I'm sure everyone all will support you in that choice.
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Avatar universal
Thanks for thinking about me while I took a break from here.  I was thinking of you as well.

It sounds like you have a great doctor. Congratulations on beating the advaced stage rectal cancer.  Somehow, I had missed that previously here, and glad you've shared that with me.  I'm sorry you've had to go through that.... and now treatment for HCV.  You're definitely my hero.- What a blessing you received the RVR...

I hope and pray and that you get past HCV treatment as you did the cancer.... and get on with your life as a well person.  

You've been on my mind as well, and I only hope that I can be the support for you that you have been for me these last couple of months... "Be not afraid."

Your grateful friend,

~Anwaar
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Avatar universal
Welcome back and good to see you on the forum.  Just this week I was wondering what had become of you.  Very good idea to take some time away and enjoy yourself before facing such a serious choice.  

I'm not sure I can give you much guidance here, because my situation was not one that admitted of any doubt about whether to treat or not treat.  My GI told me that I needed treatment right away if I hoped to save my liver.  This is a doctor I trust implicitly.  Prior to this crisis he had diagnosed my advanced stage rectal cancer and immediatly (same day he found the growth) assembled a team with whom he worked to save my life.  So when he told me I required immediate treatment for the Hep C, I was well disposed to believe him.  He also assured me that he would treat me himself if I requested this but preferred to bring a hep specialist into his practice to assure me of the best possible care.  The following week he took in a partner (Hepatologist) with particularly up-to-date experence in Hep C. I underwent a liver scan and biopsy on my 50th birthday (July 25) and as soon as the results came back we mapped out a course of tx.  I began SOC tx (48 weeks, geno 1a) on September 7 (the time it took to get test results back and get insurance authorization for the meds.)

Because I had an ongoing excellent relationship with a GI doc who knew my history, I did not hesitate to follow his advice.  I do not regret my decision.  I am responding well (RVR) and have every hope for the best possible outcome.

If I had been given an option to treat now or wait, I still believe I would have opted to get this done and put the whole thing behind me - but that is speculation on my part.  There simply was no other viable choice.  Also, my choice would be influenced by the recent cancer treatment.  I'm so tired of being ill and would do anything to get past these medical issues.  I'm so sick of being a patient and I dream of the day when I can just be  a person again.

Not sure if this is of any help to you, its such a personal decision.  Developing a good rapport with your medical team can make a huge difference in the course of your treatment.  Listen to your body, trust your gut reactions to the professionals on your case.  Ask every question and challenge answers that don't make sense to you.  You will find the way forward, and remember we are always here to listen and advise.

You've been on my mind lately.  Please keep posting with your questions and concerns.

Be well.
jd

My decision was made easy by the urgency of the situation and by my prior experience with my GI doctor
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Avatar universal
Susan,

You have been a support both here and privately already!.   I appreciate these comments.  I am leaning toward not treating immediately, but still undecided.  However, what you've said is the real crux of matter ~~> SUPPORT in place.  That, is excellent advice.  Thank you, Susan... that is something I will be sure is in place... Reading your present and post comments shows you are great support to many members here.  And I appreciate your kindness and taking me under your wing when I came in here!  ~Anwaar
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Avatar universal
Myown:  Thank you so much for your comments!!! They are so appreciated!  You almost make treatment appear appetizing! lol...

Seriously, I see your point(s) and it shows your sincere concern about me personally, and my condition; and your support means very much to me.  I really appreciate your comments.  Your particular comment, ". Also when your liver is not working properly, it has a domino effect on your entire body."   Interestingly,  I did get the impression from the nurse practitioner when she says, "No significant liver damage", and speaking subsequently with someone else that is quite familiar with liver disease stating "Your biopsy results are just as good and perhaps somewhat better than someone without HCV", that perhaps that may blow the theory of my liver not working properly, having a domino effect on my entire body, to smithereens (not by my definition, but by the nurse practitioner and other medical experts I subsequently spoke with - YIKES... everybody has an opinion! Now to wade through it all :) ).

No, I didn't see the 'debate' discussion of which you speak.  I am sure from your description it was interesting.  Perhaps someone will cite and/or link us to it.  As far as popcorn, I'm not much into drama on this sort of thing, but if it is educational and/or informative, I'm sure it will be worth the read.  I do enjoy humor though.. and if it has that.. it will make it pleasant along with informative.  (A GREAT PLUS!!) It is when comments turn mean spirited here that turns me from reading so much.  I like opinions but when someone feels the need to debate, I hope to shout they have studies to back themselves... or ... well... it just becomes entertainment, a lot of head shaking ... just my humble opinion.

Thank you so much for your well wishes and I am certainly taking it, and anything else anyone else says into consideration.  I hope I get others' opinions.

I am hooked up with a liver specialist (and looking forward to more discussions with him on the 28th of this month), I'm hoping he will work with me with my decisions - whether I treat immediately or wait.  And If i do choose to wait, which I'm leaning towards, that he will monitor my liver on a regular basis should I decide not to treat.  I'm just still undecided.. and that's why I appreciate your or anyone's intake.

~Anwaar
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Avatar universal
Sorry, I wasn't annoyed at all, just making some points, perhaps hurriedly so they may have come off that way. Maybe I haven't been following things that closely, but I don't remember you ever discussing your neuropathy prior to treatment. What makes you think it wasn't caused, or at least flared by the interferon? Anyway, I'm putting this subject to bed, literally. Night :)

-- Jim
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Avatar universal
Jim,
Everyone does have to make up their own mind,I agree but they need to hear it all IF we are truly a 'support group.'. I have sx that the disease, not the interferon, has caused. I don't like sitting down at my piano and having my hands go numb on me. IF I would have known exactly when I contracted the disease and IF someone would have told me that HCV can cause Neuropathy and it would affect my hands, I would have said "pass me the interferon,,, I will take my chances with the meds, cause I don't want Neuropathy". So everyone needs to know BOTH sides. Yes, you, without a doubt from what you have mentioned on forum, have post sx and there are others that do also. But there are many that have sx from the disease alone. Cryo is and can be very dangerous and very little is ever mentioned about this and I am talking about doctors - they rarely tell anyone about it. Many people on forum have said they have never heard of it.

But like I said, the thread with you and mike was covered it all.
When a patient goes to a "pro treatment" doctor, they will rarely hear the good points that you bring out about tx and possible post sx,,,BUT also, when a patient goes to a "Wait and Watch" doctor, they will never hear what mike discussed,,,so for those reasons I enjoyed reading that thread.

I know sometimes - well alot of times I should say,,,,it is so easy to misunderstand someone on the internet. But you seem annoyed that I mentioned the thread with you and mike..Maybe that's not the case. My intent was only to give Anwaar something to help him decide.

But anyway, I'm tired - had a long day.
See ya,
MO
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Avatar universal
That is a good result on your biopsy.  Treating is an individual decision for each person.  You know your own life situation.  You do have an excellent chance at clearing this virus.  Having no damage, it's actually easier to clear it at this point.  However, treatment is not really a walk in the park.  Do you have a good support system in place?  If you do, it might be something to take a good, hard look at doing it.  But, it's all your call and nobody can pressure you into it.

Susan
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