Hepatoma and Ultrasounds

[carolhab]

Hi folks - sorry I haven't been around for awhile - too busy working and having monor meltdowns!!  I am now week 20/48.. and am absolutely kicked in the butt by this stuff..  Anyway - I went to a gyn/obs today to check out menstrual problems I am having (she deduced they are from the TX, no big surprise there!!), and off the record, she started telling me I should definately be getting regular ultrasounds regardless of whether or not on tx.  She said she had a friend who was on tx, got sick, and only an ultrasound showed he had hepatoma...  I have not had an ultrasound since my last biopsy, and am not getting one as part of maintenance before tx or as part of tx since.... Any thoughts on this one???
thanks!!
sammy

[Califia]

You do know me, sight unseen....   Yes, I speechified pretty good about  Geno 1's and then offered to write their patient instructional material gratis.  Classic!  I walk away with more poison and additional volunteer work.  Head exam, anyone?  :)

[cuteus]

FYI, my GI practice will be doing regular ultrasounds on me even though I was staged at one, grade two.  So I guess it depends on the practice.

califia:  yahoo!!! you got it, you sweet talker you! now you can advocate for others, right?

[bzzracer]

I had HCC. The only cure is a transplant, period. The assumption was it was caused by my HCV, 1a. Your blood markers are Alkaline Phosphatase and Alpha Feta Protein (AFP). I get blood drawn every month and an AFP done every 3 months. Yesterday I had my semi-annual biopsy and CT Scan w/Contrast. And, yes, your other markers will rise too - AST, ALT, Total Bilirubin, Feritin, etc., if you have  HCC brewing.

The radiologist missed diagnosed the first ultra sound and pronounced my liver "clean". Two weeks later I had a CT Scan with Contrast which caught it. Another US at another hospital backed up the scans findings a week later. Perhaps the latter was because they knew what to look for. Don't know.

However, if you're unsure if you have HCC get a US or CT Scan w/Contrast. It saved my life, it could save yours. Go get tested, insist on it. The $$ you spend is cheaper than your life. Besides, its a good feeling to know where you stand in life.

[bzzracer]

According to my LT coordinator, Dr Pauly is one of the many Kaiser dr's involved with the HCV "passport" (program) in No Cal. There is no head honcho, per say. She may manage the Sacramento area program.

My Santa Teresa gastro will handle my program and then she will consult with Dr Joanna Ready at Kaiser Santa Clara. Dr Ready manages the HCV passport for all of Kaiser Santa Clara valley. She in turn, along w/my gastro, will consult with Dr Norah Terreault at UCSF who is the "head honcha" for UCSF's HCV program. Since UCSF is handling all of my post transplant treatment Dr Terreault is the key. Everything starts with her and dwindles down the food chain.

In your case, Walnut Creek, I would assume Oakland is the center. My transplant program is handle there, I've seen the Chief of Radiology and the Chief of Gastro there and it seems a lot of decisions come from Oakland, in my case, that is.

And, if it wasn't for you tingling my neck hair I wouldn't have this info. Thanks again.

[Califia]

I'm happy to contribute whatever little bit I can.  Btw, the phone number I was given for Pauly is [phone], probably the number you just called. Her nurse/assistant is Gayle Witt.   It sounds like you have an incredible amount on your plate and I truly wish you the best.  I'm hoping there is a Mrs. Bzzz or a close someone to see you through all of this.   It just ain't easy, this damned disease, and the rest of the social universe seems mostly clueless about what we go through.

[LvdByGod!]

ok here is a key point too as far as the ultrasound goes...have the dr add on an AFP marker to the regular blood tests...this is a type of cancer marker and it will give them an idea if tumors are a possibility...but of course it's not fullproof the AFP can be up if you have inflamation in your liver too, as many of us do...so don't panic if it comes back positive...(mine did and still is high but ultrasound in december came out clear of bumps or lumps) but once it does come back positive for whatever reason then they must keep giving you ultrasounds or ct scans every 6 months at least to check for liver tumors...high AFP indicates ultrasound....

then monitor your AFP like you would your ast and alt for any big changes...big changes in the wrong direction should indicate an ultra sound asap to check for tumors...

and yes get them every 6 months if worried about liver damage advancing to cancer...hepc/fibrosis/cirhosis all raises risks of getting liver cancer...

but, i think the lower the fibrosis level the less one needs to be obsessed with checking for tumors...ultrasounds are not that great for the body so to me the AFP marker is the way to go for less advanced liver disease...

oh and if your stage 1 or something and clearing you are really moving in the right direction so why check as often? right? drs probably think this way anyway...(keeping medical costs down)..but, all of us should have gotton an ultrasound along with a biopsy esp in the begining to get a clear look at things.

i really agree with rev...keep an eye on those drs!

[Califia]

You're so welcome.   Next time you find yourself at UCSF, check out the views from the top floor of the medical library.  Absolutely stunning.

[bzzracer]

Califia, I'm a Kaiser patient too. Tell me about "Kaiser approved a 3-month extension...". What does this mean? Am I expecting to see Kaiser cover HCV tx's only for timed duration they set or is it as long as my dr sets? Are you on an individual (like me) or a company plan? Your 3 month extension raised alot of hairs on the back of my neck.

[Califia]

Learning how to finesse Kaiser has been a long saga, but I finally found a group of competent and civilized people to deal with.   I'm at Walnut Creek for liver stuff and requested an appt with the fellow who sets treatment protocol for that facility, a Tufts-trained hepatologist who seems to really know his stuff.  I was granted a small extension because of my worry that in spite of a 3-log drop before 6 weeks, I still showed detected RNA at 12 weeks.  Testing a month later showed negative.  So I wanted to extend past the 48 weeks to at least have a full 9 months undetected (the Buti formukla).  We discussed the 72-week studies, and then he offered to split the difference.   Two hepatologists are convinced that I will clear because of that early 3-log response and stable biochemistry, normal enzymes since the first month of treatment, etc.

Then there's the question of relapse.  It seems that Kaiser is prescribing infergen at the Vallejo facility (Internal Medicine Dept, not Gastro), and  is running very good trials out of Sacramento, conducted by a Dr. Paulie.  Apparently she is the chief protocol honcho for Northern California.  So if we have to do this again, God forbid, it would be possible to stay within the Kaiser system.  I'm a private (Major Risk Medical) subscriber, too.

Hope you find this useful.   But why is the thought of extension hair-raising?  After a while there are really few surprises and you just keep on keeping on.

[carolhab]

thanks everyone for another educational fantastic thread..  I learn so much here, we should collectively write a book or document all this somehow... I really appreciate the time and thought you all put into these answer... we REALLY have to be our own advocate...
Califia - yes it will be a long hot summer,
but we will make it - yessiree!!! BTW, I saw a story on PBS about the common wood frog which freezes solid every year and thaws out in the spring!!!
http://www.pbs.org/wgbh/nova/sciencenow/3209/05.html
May we all come out of this tx freeze soon, warm up and leap into total health...  ribbit... ribbit.... amen...

[LvdByGod!]

rev i completely agree with you of course... but i have read that "normal livers" don't really get HCC...it is rare. but if there is any fatty infiltration or fibrosis it raises the odds...

yes though for the average person you hit the nail on the head that stage 3 is the more probable "watch care" mark...

i just wouldn't want anyone to think they have "no risk" if there is even a small risk...then they may not ever look for it.

never hurts to be more careful than you have to...but at the same time fear and obsessing can really harm people too...for me i watch for the worst and pray and hope for the best...but i've always dealt with life this way...that way i'm prepared somewhat emotionally for what life throws at me... this way i also can keep an eye on those "very caring" drs!!!

[bzzracer]

I located a Dr Mary Patricia Pauly in the Kaiser Sacramento Medical Center, specializing in gastro and IM with interests in hepatitis C, liver transplants, and Crohn’s Disease. It does not state she is head of anything or could be she hasn't updated her web page in years. I left a vmail with my No Cal transplant coordinator, Oakland, if she knows of the head HCV honcho for Kaiser No Cal. It could well be Dr Pauly. I like to know the program and relapse program in place, who runs it, where its being run, and so on. I'll comment again here if and when I find out.

I meet with the UCSF liver surgeons on May 3 and my Kaiser gastro on May 5. At this time I believe the topic of discussion will come around to when will I begin tx - type, doseage, duration, etc. Your xtension was hair raising cuz it raised an alarm, the alarm being I need to draw up a plan of what ifs to present to the dr's so I don't have to debate over an extension when the times comes.
Thanks for your input, it provided me with insight I overlooked.

[honey1616]

Sorry to hear you are going through a frustrating situation! Since its been 4 years,,,,you definitely need a follow up and also ultrasound.  This is very important before starting your tx as you will know after you are through,,,if it set you back a stage or 2.  Just amazing,,,that they are not going to do this!

[Imagine]

I'm stage 3+ geno-1a. I am going through a low income program at a hospital in Seattle. I had my biopsy four years ago. Not once have they said anything about an ultrasound or ct scan. Would this be because of costs or because my bloodwork indicates it's not needed? I should be starting treatment very soon and now I am concerned I have not had all the tests I should have. They have also indicated I don't need another biopsy when I asked about that. They said they don't even do one after treatment. I have enough anxieties as it is, now I am wondering about this. Enough already!

[Califia]

Oh boy.  Saw the title of the thread and thought YOU were going to announce a hepatoma.   Gave me a total heart attack.   (Too many mixed organ references here, ya think?)

[honey1616]

Sammy,,,The tx definitely causes menstral problems.  That is almost a given for each woman on tx.  My periods totally stopped during that time.  As far as the ultra sound,,,if you are stage 3,,I would get one during the tx. Especially if the dr suggested it.  My dr had me do an ultrasound right before I started the tx.

[Califia]

It's okay, my pulse is back to normal.   And I have great news!  Well, great news if you're a masochist.   Kaiser approved a 3-month extension for me today.  Whohooo!  More abuse!    Scary, huh?  It's going to be a long hot summer for us.  (Pray for fog, sister, and lots of it.)

[honey1616]

Sammy,,,,yes,,yes you are right,,,,with hep c,,regular check ups including ultrasound should be done whether your dr wants you to do every 6 months or yearly,  I was just saying if now while you are on tx at 20 weeks,,,,only way I think your dr would want to do ultrasound would be if he was monitoring you closely.  Most people get them before tx or a few months after completing the tx with/or biopsy.

[carolhab]

sorry sorry sorry!! didn't mean to scare anybody and sound so dreadful...  thanks for the info.. but, why only at stage 3 - shouldn't all of us be getting these as part of the protocal because we have Hep C, are we at risk no matter what stage??? just wondering...
Califia - how are you!!  sorry I haven't been around..   I have just been all-out beat, and just plain scary to be around (just ask my boyfriend!!)... but I am slowing down, and after the end of May will be working part-time and will have time to smell the flowers.. I bow to the power of the church of interferon...
I pray for your healing and fast recovery from this tx...