Lurked since August... finally posting, second opinion concerns

Hi all. Have learned something daily from everyone and am feeling more power, but still wimpy about dealing with docs (not that I have seen Doc much - first consult and he did biopsy, after that saw NP once and talked on the phone with NP twice). History: Female, 52, likely infected in late 70s, diagnosed in 91, biopsy showed no damage. Doc said, nothing to worry about, come back in 5 years. Learned a little in that time (no internet!) mostly treatment was not successful. Based on that, opted to skip biopsy, but was told still had virus. Head in the sand until spring of this year after seeing the goofy beat-up face ads, thought, Oh, they invented something...time to check it out. Back to same doc (who is highly regarded hepatologist). After biopsy in July, came in to see NP who tells me I am a grade 2, stage 2, 1a, high viral load (>8 million)  and my liver function is basically normal, so I can wait to treat and take time to lose some weight in prep for treatment. Good news (I think)! Then, he says he is a little concerned about my low platelets and just to be sure of my grading, I should go for a cat scan next day. Two weeks later, he calls me to say sorry, you have cirrhosis. Stunned, I blurt out, Well is it bad? I think he said, no not too bad, but it is hard to remember much about that phone call. He then told me to talk to his assistant with questions and check back in Feb07. Anyway, I called the assistant with very basic questions, compensated or decompensated, can I still treat, etc. All I knew before I found you guys. Now I know MORE dammit!

[foofighter]

Continued. Sorry about so much in one post. Anyway, the NP seems too busy, his assistant is very polite, but also too busy and I am concerned that I am wasting valuable time. I know now there are a million things to ask of him and find out about how they will care for me, but I am thinking I should get a second opinion. My biggest concern is, what if they are the BEST thing going and I alienate them by getting a second opinion...how could a biopsy be a 2/2 and then a CAT say otherwise. Could it be a mistake?

[chcnme]

Holy ****, I am so sorry.  And I'm sorry, too, for saying holy **** and possibly scarring you  (didn't mean to do that), but - you were 2/2 in July and had basically OK labs and a recent cat scan showed cirrhosis?  I'm speechless, but I can tell you, I have been warned about this possibly happening (progressing at a very fast rate the older we get - and for women, I've heard it's around 50 and that estrogen is on our side.) I can imagine after you heard the words "you have cirrhosis" you pretty much didn't hear a whole lot after that. But don't let my words scare you because -- many can do OK with cirrhosis for a long long time.  Many I've met DO have cirrhosis and are doing OK. They are doing OK; some are compensated; some are decompensated.  Low platelets, from what I've heard, is an "sign" to watch out for as far as progression.  And this hepatologist is a "regarded hepatologist".  I guess it's not that unusual for them to not know -unless they start looking at that liver more closely  (and they did with you, and I guess they found out.)  I wish I could offer you more than the "hang in there".  I wish you the very very best.  Call them back and find out all you can about this cirrhosis and about your treatment options.  

I just read your second note before I posted this -- if that PA won't talk to you, yes - get a second opinion.  

There are many people on this forum with a lot of knowledge and can help you -- many are much more familiar with this than I am and they know the questions you should ask.  

In the meantime - treat your liver the best you can.  I guess you know to not drink alcohol?  Stopping any alcohol will be imperative (if you are drinking any - stop it all.)  Any medications you are on will probably need to be looked at, too.  Get copies of all your labs.  All of them.  Get under the care of a great GI doc or hepatologist.  

Best of luck to you.  Someone will be by soon with more info for you.  This forum has great folks, and they are all very supportive.

[pigeonca]

Any doctor or NP who is too busy to engage in normal discourse with patients who pay them (whether directly or thru an insurance company), ain't worth seeing.  You have a serious disease and DESERVE serious answers to your serious questions.  Regarding getting a second opinion - any doctor who feels threatened by that cannot, by definition, be the best in town.  My hepatologist, as a matter of fact, pushed me to get a second look, as would any competent physician.

[foofighter]

Yeah, I am pretty freaked out, sometimes I actually have to stop reading here because a comment will panick me. Reading about the weight-based dosing of Riba makes me think that might be an option. I didn't include everything discussed with NP at the face to face meeting cause the post was getting too long, but with my new-found knowledge I have played that half-hour appointment over and over in my head. At the time, he said I could wait to treat and have a better response by reaching a BMI of 30 or less. He would prescribe Peg Intron. I said, aren't the side effects bad? His response: Most people go to work and carry on with their daily life and also he isn't going to come over to my house and make me take my shot. I told him I would check out the web, which he pooh-poohed. Looking back on my frame of mind, I was a total meek, wimpy patient. You think that it is the tough love approach, with patients in that frame of mind? Maybe if I go back to him with my super duper informed list of questions (I could include some of the back and forth from Hepatitis Researcher!) Anyway, my PCP is checking to see if my insurance will cover a second opinion from a U of M specialty clinic or the Mayo. Susan400, were you at the Mayo in MN?

[Kalio1]

Welcome to the forum. I know that feeling when you hear that from the doctor. Talk about feeling the bottom dropping out.
I had a similar phone conversation, I couldn't remember the details either, I had to call him again. Thank heavens you are compensated so it sounds like "early cirrhosis" but it's impossible to say from here plus we don't have doctors here. Actually we do have one wonderful doctor who visits here, maybe he will weigh in. I was told the same thing from CT scan results. CT scan isn't the BEST tool, better than nothing but a biopsy gives you a lot more info. I had a Fibroscan test and a lot of Interferon and am now told I am stage 3, so keep your hope alive. Even with a cirrhosis diagnoses you have a good chance of being able to pull that damage back and reverse it if it isn't too far advanced and you work on lifestyle changes that promote liver health. Im not sure if you can get a biopsy with low platelets, what did the doctor say? A biopsy would be helpful but you might be told you can't get one due to those low platelets. Do you have other things going on? Any symptoms?
I think you should definately get a second opinion and try to see someone very Hep C saavy and aggressive with treatment. I'd go see one of the big guns if possible. Where are you located?
Losing the weight first is a great idea but I wouldn't wait too long to begin treating. You can revamp your whole diet to reduce stress on your liver, I'd do that right away. Search a little and you can come up with a good nutritional plan.  Don't consume sugar, red meat,reduce salt, etc. Eat small meals more often rather than big ones, easier on the liver. Of course no alcohol, no smoking, no meds that are processed by the liver if you can help it. I can get you some links on diet if you need them. You want to eliminate any and all stress on your liver that you can.

The endless waiting on appts. and the BUSY doctor situation seems to be the norm, sadly. Being the holiday season, Feb. 7 sounds about right. It will give you time to learn all you can and that is a good thing. remember knowledge is power, it also helps to reduce your fear when you are informed. Try not to panic, I know it is very scary to be told that but try to stay calm. We have folks here who have cleared the virus with treatment who had early cirrhosis, it is possible.
I dont think it "alienates" you when you get a second opinion, it is the smart thing to do. Jus ttell him you want to be thorough, it isnt an insult to get a second opinion at all.
That should not be a problem. People do it all the time.
You need a doctor you can talk to and feel like you are getting the answers to your questions, that is paramount.

[foofighter]

It's also weird, he has told my primary care provider because my liver functions are almost normal I can pretty much take any medication I need. She has me on Meridia for weight loss (which has worked great, down 25 pounds in 3 months). But I just read a post the other day that normal liver functions can indicate cirrhosis. My PCC is nice and admits she knows nothing about HCV, has all of hepatologist's and NP notes. Yesterday when I saw her she asked about my forum and what I learned lately. My answer to her was a question. If I hit my head and needed prednisone for brain swelling (which happened to me in 2000), based on info from the NP would she check with him before prescribing it? She said no, and I read notes from a post last week about it being Purina Virus Chow for Hep C. Maybe the treatment in 2000 sped up my liver damage. I have been taking ibuprofen as well, but read at the link to the doctor that is treating the prison population NOT to take nsaids.

[sallyo]

I would definitely get a second opinion.  In the doctor world they are quite common.  Just make sure the second opinion guy is in a different group.  My insurance co will pay for second opinions so be sure and check.  I feel if this first doctor is not giving out the treatment and support you need now he will probably be difficult to communicate with in the long run.  If you do treat, you will need a more available physician.
  I tried to change doctors when I first started, not because I didn't like my doctor but because I really did not like his partner.  Be advised that the second doctor will likely inform the first doc of the second opinion.  They did with me although I did not ask them not too.  Maybe you could ask that they not notify him and provide #2 with records yourself.
   Also when I was doctor shopping, I found that many GI doc are not accepting hcv or esld patients.  I was told my my PCP that it is because they are time concusming and not cost-effective.  Little good that does you right?.  Consider an infectious disease doctor.  Most of them are very knowegable on this subject.
  If you decide to stay with doc# 1, just be upfront with him and explain that you were so floored by the diagnosis that a second opinion is something you felt necessary.  I think he will understand.  If he doesn't , then you don't want him.  Even if he's the best thing going, if he is not taking this as seriously as you would like, it really doesn't matter, right?

[foofighter]

Had a biopsy, but he said the two samples fell apart? I suppose that is why he didn't trust his original 2/2 diagnosis. Also I read here that the type of tool will help get a better sample for people with cirrhosis.

No smoking, drinking etc for over a year (after I saw that darn ad more than a year ago, I was done!) My liver doc said he hates that ad because it scares people, but you know, it made me get back to the doc.

1200 calories a day, basically weight watchers, but that has salt and sugar. Walk two miles a day.

[Kalio1]

Small amounts are OK according to many docs, if you need pain relief. I was told no more than 2000mg a day.

Very scary to be told by the "experts" they don't know anything about your disease. Ugh! This we pay for?? The more you know, the better your question to the doctor are, if they give you "I don't knows" you really need to find a doctor that does.

My enzymes weren't hardly high either, I was given the "you are fine" deal when I asked about damage and turns out I had substantial damage like you.
Do you have spider nevi? red palms? What was your platelet count? It can be a sneaky disease unfortunately.

Big congrats on that weight loss! That's great. Your nutrition and what you eat are super important.

[jmjm530]

If conversations with your doctor have you wondering if you need a second opinion, then you probably do.

As SallyO said, not in the same group, in fact definitely not in the same hospital as doctors who practice together are often reluctant to contradict each other.
As Kalio stated, try one of the "Big Guns" if you can. If you post the general area in which you live, perhaps someone can come up with a name or two for you.

All the best,

-- Jim

[Cindy10]

The same thing happened to my hubby. Biopsy showed stage 2 told he could wait then an ultrasound showed compensated cirhosis. We just found out in Oct 06. He is waiting for all apts to complete and starting to treat in January. The doc said biopsy not always accurate (wish we knew that before). He too has low platelets (75000). You should avoid NSAIDS, they lower the platelets. I understand how you feel he is going through the same thought process as you. But doc says this is not the end by any means, just needs to be addressed now. He also said some damage can be reversed with treatment. Hang in there, take care of yourself and get lots of info. Treatment I was told is a must, but you dont need to rush to fast. Take care!

[Kalio1]

I read those ads were aimed at people who had it but weren't treating it. Just awful ads, but hey it worked in your case and you caught it before you decompensated!

The biopsy might be a moot point as you know you have to treat, so you dont need it to determine that decision but the info. you would get from the biopsy would be valuable to you. So they did the biopsy, the sample was useless and then just didnt do it again? Huh? If he felt you needed one and then did a bad one, you still dont have the info!

I heard the same thing, that HCV patients are a poor investment but I cant see how that is true.  My doc has made major bucks off of me! I think the real reason is they find a lot of HCV patients are uninsured and the treatment doesnt have the greatest odds of success and goes on and on.

I think some doctors hate the net because their patients get informed and start asking so many questions, that's why they poo poo it. Really a doctor should be glad you are researching and involving yourself in your care. If you can't get satisfactory answers or are being given the wrong answer and you have researched it and KNOW it is incorrect, all the more reason to see another doc.

[Kalio1]

Reminds me of that John Lennon lyric, "life is what happens to you when you're busy makin' other plans"

You keep your dreams alive, this is a bump in the road not the end of the road!

Love the Ranch idea and name! I have a friend in NorCal who started a rock and roll camp and man oh man does he rake in the big bucks! Kids absolutely love it!

That Grohl, what was he thinking? lol

Stay positive, find that riot grrl, you need her now. Im so glad to hear you have an advocate to go with you, that is the BEST because it's hard to absorb all the info and keep it straight when you are being examined. I always take my mate, it makes me less afraid and more powerful plus he remembers much better than I.

[foofighter]

When trying to find a gastro/hepatologists for a second, they all were at the same group! Sally, that was exactly my concern. And truly the doctor is a big gun, it just seems like the NP is making the calls. I figured out on the Clinical trials page that they are the site listed in a few in my neck of the woods. I know a second opinion makes sense, it's just all the hoops. You guys know. I am waffling and thinking I should call my guy and say get me in before February, I HAVE to talk to you face to face. See if he has a different dynamic with me now that I am more informed.

[foofighter]

Sorry guys, I am just getting the hang of this posting stuff, never have done it before.

PCP said my platelet weren't really that low, so she was surprised that that is what made them go for the CAT. I suspect there were other signals and like you said, the biopsy sample wasn't good enough.

Platelets 111 (x10E3/uL No red palms, no spider thingies.

Actually, I have always felt fine. Not even tired.

[Kalio1]

I think that is an excellent idea, call and try to get a face to face asap. I also think Sally has a good suggestion too of seeing an infectious disease doc. if there are no other Heptologists or Gastros in your area. You have to get over your wimpy patient thing, you have to be proactive and get the answers you need, this is your life you are talking about! These decisions are super important and you need the best advice you can garner. You deserve answers to your queries and a doc that is up to date and open minded. You need to know you will be dosed properly, and the doc will be there for you should you need support (rescue) meds to stay on treatment and avois dose reduction. It seems across the board people who have taken both Pegasys and PegIntron consistently say the side effects were MUCH easier on Pegasys. Docs always "you will be fine" and tell you patients can work, etc. Im sure some can, but some can't, you just won't know until you try it and see how your body handles it. I was an extremely high energy person and PegIntron kicked my you know what. I sure wish I'd known enough to push for Pegasys instead of PegIntron, sounds like it would have made this "trip" at least a little easier. Do not let yourself be intimidated by the doctor. Lots of people get that "white coat" fear thing and forget to even ask the questions they wrote down prior, it's normal but those days are gone for you now that you are facing a serious disease. You want the best possible tools to fight this thing, your communication with the doc is THE most important one. You want a 4 week PCR, you want weight based Riba and you want to know support drugs will be available to you. If your ins. company balks, remember there are patient assistance programs available should you need them.

[foofighter]

Yes, I do appreciate fine music. Actually I was hoping to marry Dave Grohl, but the darn guy up and married someone else!

Believe it or not this diagnoses has stirred something up in my heart that I don't understand. I had let go of a few of my passions as I grew older and just have made my life all about work and hoping for early retirement to pursue maybe a couple of those dreams. I guess worrying about what I will do when I retire has taken a back burner, big time. I used to be a svelte, bass playing riot grrl who loved horses and dreamed of owning the Daisy Hill Puppy and Pony ranch AND holding a rock n roll summer camp for girls.

Well, I am losing the weight, picked up my old bass and I will be heading out for a dude ranch in January.

Oh and one more thing...beat this virus.

[ladybug52]

I think that's awesome! Big smile on my face! Follow your insticts-dreams and don't let that bass get too far from your fingers again. Have a blast at the dude ranch! And get well!
Bug

[foofighter]

I hear you. Yes it is white coat. Even at the PCP my blood pressure was sky high at first. She almost took me off Meridia. I finally got comfortable with her and it actually is a little low.

You all are motivating me. I have saved the previous posts with  questions for the doc and printed out a ton more about rescue drugs and that creepy Cryo thing. I did develop cold weather hives about ten years ago and still deal with them, so I will have to question him about that.

I am also very lucky to have a co-worker/friend (who is a tough cookie) that will go with me and take notes and make sure I don't forget anything. I will call tomorrow to see if there is any way to get in before Feb. Maybe at the very least I can get questions on paper to the NP's assistant and she will get those answered for me.

Who knows when I will find out if insurance will cover a second opinion so at least I am doing something.

[foofighter]

Thanks to everyone who gave me advice tonight. I know newbies all say this, but I don't know what I would have done if I hadn't found this forum. It has kept me busy learning while waiting, informed me that maybe I shouldn't wait and motivated me to get going. And last but not least, given me hope. Goodnight all.

[ladybug52]

Love your moniker! You sound like your battling 3 problems-weight loss, hep c and Dr's who are too busy to give you the time and help you need. Feb 7th? I would go crazy waiting.
Congratulations on losing weight and exercising. 25 lbs is awesome! You sound like a fighter (who enjoys good music) and just keep at this group to get more answers. I don't understand how the bix pieces fell apart. Did you just have one bx?
Maybe you should get another opinion quick. Doesn't sound like this group is helping much.
Good luck
Bug

[OceanLiver]

hi foofighter, I am new to the board too.  Also had a surprize diagnosis of cirrohsis  (compensated) from a CT scan ( thought you could only see that in biopsy).  it was one of those new machines and I got a CD of the scan that day.  The very reputable doc. told me not to get a biopsy, not to treat, that some people never decompensate and I could get a liver transplant if I needed one.  Was I shocked! I had another conversation with him after researching and everything I saw indicated that treatment could help and, in fact, this was my last window of opportunity.  When i questioned the doc again re. treatment helping reduce the odds of HCC his reply was "only marginally"  So I decided to get a second opinion.  Having the CD of the scan was very helpful.  The new (equally reputable) doc was very through and said that he would treat me with compensated cirrhosis geno 1b. Odds not good but ... possible SVR . He and radiologist thought the CT inconclusive so I did have biopsy.  Conclusive bx "incomplete chirrosis (cirrhosis)"  When I went back to the 1st doc - he had report from 2nd opinion doc - I asked him why he thought I should not do tx .  he said that he never said that.  I almost fell out of my chair.  I actually really wanted to hear his opinion.  When I questioned him further about our conversations he said I told him that "I had a lot on my plate"!  He said it would help me to choose one doctor and it was my choice.  Needless to say I went with 2nd opinion doc. and am in week 14 of treatment.  

2nd opinions are standard practice.  Insurance should cover it.  Doctors expect it.  Don't worry about their ego's.  This is your choice.  This is your life.  I think that good communication and trust is the most important part of your relationship.  A close 2nd is the office staff and nurse and PA.  You will be working with them primarily.  If you can't get through the phone lines or talk with different people all the time, that could be a problem.  Good luck, don't panic.  You are beginning a long journey and you will find the right path.  You have time and you need time to prepare on many levals.  That is great that you are working on your weigh now.  That is so empowering and you will feel better because of it.

[NYgirl]

I don't want to bore you to tears repeating every bit of good sound advice you've already gotten, I just want to make sure you know...it doesn't matter REALLY how nice a doctor is but how SMART they are and how UP TO DATE they are on treatment and such.

A lot of doctors seem to have the cookie cutter approach where they read out of a manual and prescribe that way. Yet some doctors are totally current and know the studies and latest information - if you are having questioning about any of that...find a good HEP DOCTOR.  It is CRUCIAL that you have a doctor you not only LIKE but have faith it.

My doctor encouraged me to have a second opinion before I decided to extend treatment (I am on week 65 of 72).  He hadn't had anyone do this before so he sent me to one of the lead doctors in New York to double check. THAT gave me confidence in him...knowing that he cared enough to put his ego aside and worry about me.

I'm so sorry all this junk happened to you - nobody deserves this. I'm so glad you found the forum. It sounds like you need som people you can VENT to who understand.

And we do a LOT of venting around here!!!!!!

[Pdilly]

Now I am wondering if I should ask for a CTscan too.  I only had a bx.  Stage 2  Grade 2.