HCC Testing

[Nina Mae]

Hi Everyone,

I'm on Day 39 of 84 of Epclusa/Ribavirin.  GI side effects have been very minimal but the mind games (riba side effect, I assume) has really taken a toll on me.

I've been visiting the forum but 'lurking'; reading about others' situations and trying to find info from you guys

I starting having a rapid weight loss; losing a pound a day in the 1st week of tx. And being a cancer survivor and now know that my risk of HCC is even greater.  That said, I insisted on HCC screening now despite that my previous ultrasound was in Nov.

Had most recent ultrasound on Mar 30; results came back and now I'm being sent for a triphasic CT scan "just to be sure".  Is this standard?

Sure of what...that I don't have HCC or that I do have it.  Afraid to ask..

So now that I'm totally paranoid (thank you, ribavirin) and been so overwhelmed with the dx's of HCV and F4 cirrhosis (fibroscan rating, I don't know how they get that 'F4').

Anyway, my question is this:

Does anyone know what the standard procession of screening for HCC is?

I know I'm to have an ultrasound every 6 months along with the AFP (which is in normal range though not really that reliable as one source for dx).

But then what happens once they find something suspicious?  I know they won't do biopsies.

Then this triphasic CT scan?

Then MRI? 

What finally confirms whether we have it or not?

(I have this sinking dark feeling...then again, it could just be riba mind games, I don't know but I'm pretty upset).

[lporterrn]

Benign lesions are very common, and if one or more were found, it would totally reasonable to confirm with further testing before assuming the best (or the worst, which we patients are inclined to do.) Sounds like you are in excellent hands. 

[Nina Mae]

Thank you, Lucinda! 

I needed a 'voice' of reason here with all this. 

I get 'cloudy' and forgetful, and I end up multitasking but not completing any one of the tasks so then I get frustrated with myself and then it turns to tears...almost every time.  I feel like I'm moving in slow motion but my mind is racing.

I know, it's the ribavirin, and I tell myself it's only temporary and then I get paranoid, thinking about HE and thinking about HCC.

Well, you know where I'm coming from, I'm pretty sure.

Sorry about rambling...it's so consuming and though my spouse is so supportive, I hold a lot of my fears in because I don't want to scare her any more than she already is.

Hope you're well, Lucinda.  And thank you, again for your sage input!

[Lynn K]

As far as F4 that is a fibrosis (aka scarring) score. There are several tests that can determine fibrosis score either liver biopsy or the newer less invasive tests for fibrosis the fibrosure a blood test or a Fibroscan which uses a machine sort of like an ultrasound but it make a sort of thump which can estimate liver stiffness.

No matter which method used to determine liver scarring the scale for fibrosis is as follows:

F0        No fibrosis
F1        Minimal fibrosis
F2        Moderate fibrosis
F3        Advanced fibrosis
F4        Severe fibrosis (Cirrhosis)

There is no higher level beyond F4

After that cirrhosis is further defined as compensated where the liver is still able to compensate for the damage it has accrued and can still perform its important functions well enough in spite of being damaged or decompensated where symptoms of liver failure like refractive ascities, esophageal varicies, or HE begin to develop.

Here is a link to an article about converting Fibroscan scores to fibrosis scores F0 through F4 but basically if the cause of liver disease is hep c a Fibroscan score greater than 15 indicates cirrhosis. For reference my four year post treatment Fibroscan score is 29.

https://hepatitiscnewdrugs.blogspot.com/p/fibroscan-scoring-card-understanding.html?m=1

Hope that helps

Best of luck

[Nina Mae]

Hi Lynn K!

Thanks for your informative reply.  Though I haven't opened the link yet, I will.

I was really getting worried about the riba mind games as they started as 'bouts' of symptoms that I described in my original post.  But last week, the bouts started coming on stronger and in frequency making them unmanageable at that point...I am  too aware and paranoid about the possibility of HE and HCC.  As a result, I was asked to temporarily stop the PM dose of riba  over last weekend and I was so relieved that the fogginess, forgetfulness, etc all lifted like a cloud by Sunday and I stopped riba Pm on Friday.  I suppose I needed the validation that I'm not crazy (yet) and that riba is the culprit.

So relieved about that...so I'm on every other night riba dose, doing my standing order lab work today as requested by nurse to discuss tomorrow and plan to get back on full dosage because I don't want to jeopardize a chance at beating this because of craziness...my spouse and I decided together that we can deal with the 'crazy' for ~6 more weeks.

Anyway (sorry about rambling!, geez), if something suspicious shows up on the 6 month ultrasound, then what...an MRI, right?  Then after the MRI, what?  Biopsy?  Treatment (if there is such a thing).

[lporterrn]

It depends on what is found. How about we cross that bridge when we come to it - I'm not a fan of imagining the worst until I have good reason to, and at this point, things are still looking like they are in your favor.

[Lynn K]

I agree with Lucinda about not worrying until there is a reason. But just so you know there are treatments that can be done. From what I gather if something suspicious is seen on ultrasound the next step would be an MRI this would not be followed up with a biopsy. If unsure probably additional imaging.

I worry about HE also it is actually my greatest fear. There is an iPhone app called Stroop test that can be used for screening by doctors. I’ve seen the same test done on mind exercising app games you might want to check it out. I’m not sure if the Stroop test app is available on other platforms.

[Nina Mae]

Lucinda:  Yes, you're right about not jumping to conclusions and 'wait and see'; I'm usually exactly that person:  'Wait and See' but well, let's just blame my paranoia on riba (why not right?)  Ha!

Lynn K:  I got worried about having to do another imaging test after the ultrasound results came in and being a cancer survivor, well, that is a red flag for me (it's a triphasic CT scan) and to quote my nurse, 'yes, I got the ultrasound results and I'm sending you for a triphasic CT scan (just to be sure).'  Made me start thinking those dreaded cancer thoughts again but accentuated to the 10th degree thanks to  ribavirin...needless to say, I was a wreck.  But Lucinda once again was the 'voice' of reason and said that most lesions are benign but if there are one or more, it's reasonable to do additional testing before assuming the best (or in our cases, we mostly assume the worst because that's all we've been getting for so long)

I'm 66; dementia runs in my family; and the thought of any one of those kinds of illness like HE or dementia is terrifying for me too.  I have an IPhone and there are several stroop apps.  Is yours the 'stroop test'?

Again, thanks for your help, you two!  Hope you're both doing well!

[Lynn K]

Yes the app is called “Stroop Test” I found it when reading an article about HE and they had a link so I know it is the one they were recommending. Yeah totally understand with having a prior history any words like additional testing would have alarm bells going off in your head. Did the nurse say anything about what was seen that they want to do additional imagining?

[lporterrn]

A word about HE and other forms of dementia - I am going to blog about this (no promises on the date, but maybe Monday https://www.hepmag.com/blogger/lucindakporter)

In the meantime, the important things to remember are:
1) Memory loss and feeling dazed and out of it are common occurrences with many causes. Insufficient sleep, stress, and anxiety are probably the culprit most of the time.
2) Forgetting where you put your keys is normal; forgetting what your keys do is not. Driving and forgetting where you are or what you drove past in the last 10 minutes is normal. Wondering what the round thing between your hands is, is not.

Sleep, stress reduction and meditation are the pillars for improved cognitive function.

[Lynn K]

Thanks for the info about HE as I mentioned it is my biggest fear with having cirrhosis I’m more afraid of losing cognitive function than perhaps even death.

I have read that about 50% of people with cirrhosis have sub clinical HE so when I hit the button on the remote for off when I intended to hit the menu or when I leave the front door unlocked when I carried a bunch of stuff into the house or when I’m searching a little long for a word it freaks me out a little.

How would one recognize and distinguish between sub clinical HE and just normal life and common forgetfulness I guess is my question/concern.

[lporterrn]

I saw an excellent presentation on this at one of the liver meetings. Peter Ferenci, MD and a few other docs are really trying to bring this to the forefront. Sadly, medicine has failed to establish really good ways of tracking subclinical HE, so Fereneci and others are diligently studying this. The Stroop test and a few other tools are used. But again, these aren't perfect when you add in poor sleep, stress, etc. For instance, I would likely do poorly right now since I am in need of a nap.

If you are up for a deep dive, I suggest looking at AASLD's practice guidelines: https://www.aasld.org/publications/practice-guidelines-0

[Nina Mae]

Lynn K:  Re: asking nurse why the triphase CT scan is being done, I didn't ask...I figure they saw 'something' and they want to determine if that 'something' is benign or malignant (the purpose of this test).  Had I asked at this point, I think I'd get a watered down version of finding a 'something' as my nurse knows I fear cancer because of my other cancer in 2003.  So again, I'll 'wait and see'...scan is scheduled for Monday at 12:45 pm so I'm hoping to have some more definitive answers next week. (Fingers crossed)

Lucinda:  Your post about HE defining the difference between stress, lack of sleep vs other disorders is very useful. It's the subtle symptoms where any one of those disorders (ie dementia, HE, Alzheimer's, etc) would all apply, I'd think.

Look, I'm far from anyone that is as knowledgable as you two and others on these things but I'd have to think the natural aging process may have a factor in this mix of it all, no?

Also, I look forward to your blog re: HE.  I've got a bit of reading to do (the links you guys posted) so I'll get busy with that.  Thanks!

Oh!  labs came back looking good since I had the riba break.  She wanted to check my hgb and it actually looks great!   She said if I want to go back full on with PM ribavirin, that's fine.  If I need to stop, I'm to just let her know. 

I look at it this way:  The initial tx was prescribed as taking the two doses daily.  I am officially half way through (yay) and I rather err on the side of caution and plow through the 'crazies'.  I know myself; if, the gods forbid, there's a relapse or whatever, I won't have to regret not doing the tx as initially prescribed now; I'd never forgive myself.  I don't want to jeopardize beating this.  My numbers are all going in the right direction; mostly all are in normal range except the RBC (for obvious reasons) and the darn ALP and INR. 

Anyway, I'll stop here for now.

Stay great, feel good!  Again, my thanks to you both...

[Lynn K]

I’ve taken riba on several treatments became anemic every time. On my last treatment we started at 1200 mg/ day 600mg am 600 mg pm when my HGB dropped to less than 10 we changed to 800 mg daily 400 mg am 400 mg pm that got me back to just over 10. It only took me four weeks to drop from HGB of 16 to HGB less than 10

I think I hit 8 if I remember correctly when we changed my dosage. Had a whole lot of ribavirin pills I had to throw away because my mail order pharmacy sent me a 90 day supply of the higher dosage pills.

Sending you my best hopes you have good news on your Monday scan I’ll will be waiting to hear what you learn

[lporterrn]

Congrats on the good numbers! And yes, normal aging accounts for short-term memory loss and reduction in ability to focus. Meditation can help with both and actually rebuild brain tissue.

[andrew j]

Re: Subclinical HE etc.:

FWIW -

I was really unwell when I had Hep C, including bad brain fog.
In desperation, I researched as much as I could, and it soon became impossible (at least in terms of describing things in words), to distinguish between what I was experiencing, and the definition(s) of subclinical HE.

The term used to describe both is 'impaired consciousness'.

What does that mean?

In a way - its an inability to stand above things.
... You're sort-of 'in' your experience, without being able to stand above it - or exercise 'executive control'.

Because I knew something was wrong, even from early on (years before I became full-blown symptomatic) - there was a constant, vague uneasiness surrounding everything.
Once I became unwell ... I don't know - extreme difficulty making decisions (to the point of praying to God to please help clear my mind (- to no avail) ... uncertainty about whether I could drive safely?
I think that that was perhaps the most pointed giveaway: errors in driving, parking in yellow lines and being certain I was parked in white ... uncertainty as to whether you're seeing everything you need to be seeing in order to drive safely.

Sorry - mustn't do on.
It's upsetting stuff, and was the most difficult aspect for me of [trying to manage] having Hep C.

Safety is compromised.
That's the bottom line.

I think you're right about tiredness, Lucinda.
Extreme tiredness (profound exhaustion, a GP I had once described it as) can have the same effect.

The best antidotes I found included drinking plenty of water, eating as healthily as possible, exercise - esp. walking, running, and swimming ...
Some sort of spiritual belief, or understanding (whatever you understand that to mean).
You know - the old favourites! ...

Anyway - best of luck with these tests you're going through Nina - and with your treatment of course.

A.

[Nina Mae]

Hi Folks,

Firstly, thanks for all your well wishes and your support...I am so grateful, always.

As soon as I find out some results, I'll be letting you guys know.

andrew j:  Thank you for your input.  I, too, for some time, was having difficulties finding the right word, like Lynn K described in an earlier post.  I used to joke about it and say I felt like I was playing, 'Super Password'.  It was *periodic*.  I stopped driving back in 2015 voluntarily as a result of another health issue (BRAO in right eye) plus I can't take the traffic in Vancouver.  I walk a lot; always did.

I didn't become symptomatic until Sept 6, 2018.  Very long story that finally led up to  the dx's of HCV and F4 Cirrhosis in Nov 2018....then all then all screening, etc.  Started Epclusa/Ribovirin on Mar 1.

These 'lapses' of cognitive functions really topped off around Week 4 of tx.  The fog was so thick I could barely see past the 'crazy', confusion, forgetfulness, inability to multitask,   then the frustration because I'm 'aware' of these changes.  I suppose it's good to be aware of it nonetheless terrifying but then these 'bouts' started to increase to the point where I was constantly in that state and afraid it was now permanent and I must have HE and you know what happens, I needn't say more. 

Sometimes, I could even be posting something on the forum and I can't find the word I'm looking for; next thing, it's about 10 min later and I still can't find the right word. 

Lynn K, I understand what you mean about your biggest fear is HE; for now, the fear of HCC is my priority, for now..  Heck, I'm worried about both of them.  But, hypothetically, if I had a choice of either dying from HCC or HE, I think I'd rather die before HE becomes so apparent.  The idea of losing my mind like my Mom did is too  much to bear.

I am tired though...but I'm good.  Today was a mighty fine day, it turned out to be.  And tomorrow should be just as nice. 

I'll stop here for now.

Again, thank you again and again for your support.  I'd be lost without this forum.

Stay great; feel greater!   

[I fightis thetitis]

Hi Nina,

Well sounds like you have been dealing with some of the same issues and there is good news in the midst of what seems like a life challenge.

In my recent Ultra Sound in feb, 3 lesions were detected on my liver that were not there or detected on prior US nov 2018. I assumed aggressive hcc, freaked out and started to get my affairs in order. A couple of good cry's in between as I have young kids.

Got an MRI in early April and a call from my GI 3 days later to come in and discuss results. By this time, I had researched 100 different tx options, I was ready to hear the worst news head on. I had even rehearsed what I was going to say to my doc as far as TX options I discovered.

He said he does not think I have hcc, probable calcified focus's. (benign lesion)

Heres the official MRI report.
"No focal hepatic lesions. No evidence to suggest cirrhotic nodular changes.
Nonspecific 5 mm and 3mm right hepatic lobe echogenic focus's, from previous ultra sound are likely calcifications. Liver appears normal."

However, the even sweeter news was he said I don't think you are cirrhotic or have severe fibrosis. You're probably F2 or low 3.  What the what??
Most people that have both high indirect and direct bilirubin, (2 separate test) are confirmed for Gilberts disease. He said "You have Gilbert's disease."

Why this is good news?
This makes the fibrosure test score un reliable. Gilberts disease tips the scales.
The Fibroscan that I took in 2017 came back as F2 and he thinks that is more reliable in my instance.

The moral of this story is: I went to my GI expecting a death sentence and walk out a new man. I know it's easier to say then to do... but "Don't bleed until your shot!"

I joked with my GI he could have saved me some anxiety and told me this on the phone and I asked if he had a sick sense of humor?? Lots of laughs and high fives.

Also, after all my research, even if we get the dreaded c, yours would be caught early and there are fantastic advances to get you in the clear. 

We are here for you and keep us updated.
Lucinda is an Angel and Lynn is a role model to keep up the good fight.
Blessings, peace of mind and good vibes to you!

Best always,

Greg
 

[Nina Mae]

Hi Greg!

Thank you so much for your warm words and encouragement.  If it wasn't for people like you, Lynn, Lucinda and so many others, I honestly say that I don't know what I'd do.  I've learned so much about this disease(s) from the forum...from the actual people who experienced the same.

It sounds like you're doing well, Greg...and my very best wishes for good health for all of us.

Good vibes, blessings, and of course, peace of mind right back at you!   

[lporterrn]

So happy to hear the news Greg. I have heard this story before, lived this type of story myself. It is natural to go to the dreaded outcomes, although the data are overwhelmingly in our favor. After many years of living with worst case scenarios, I've come to realize that if I am going to make up stuff, why not make up good outcomes. That worked for awhile, but it denies the mind's inclination to prepare for the worst. Now I aim to get the facts first, then freak out later. This has saved me a lot of freaking out.

[Nina Mae]

Lucinda!   

So good to see your post. Read your blog re:  HE.  Thank you for that. Well done and written in plain terms so people like me can understand.

 I do try to see the glass as half full and not empty.  My mindset always impacts my health challenges and tx's.  I understand that; I live that; it's worked for me in the past and 'sometimes' in the present.

What I'm finding is that it's becoming very difficult to maintain a positive approach with all this.  I know I'm not the only one but yet, that doesn't seem to matter when I feel awful, I can see these physical changes, I've lost way too much weight too fast, I can't think straight more than half the time and though I know it's mostly the side effects of my good friend, ribavirin, it's still there and no matter how much I meditate, how much I distract myself, it's still there...sitting at the top of my thoughts and pushing all good ones away like the bully it is. 

Plus I have some really difficult personal issues that are very important too...I can't put that to the side and just deal with HCV, I 'have' to help in a family crisis 4000 miles away somehow.

I need to stop for now.  Time to get distracted...

Stay well...and feel even better than the day before...

[lporterrn]

Wishing for the very best outcome, or at least, peace in the middle of trials.

[lporterrn]

I thought this might be relevant, given our conversation about HE:
https://www.hepmag.com/article/modifying-microbiome-can-improve-encephalopathy-due-liver-disease

[Nina Mae]

Hi Everyone,

Re:  Triphase CT Scan results:

Scanned on Apr 15.  After long weekend, I emailed my Hepatology nurse yesterday for results and copy of pathology report.  By federal law (Canada), she is not permitted to discuss this with me as it has to come from my dr who is away until Thursday.

The earliest appt I could get in is set for June 4 but I'm on the cancellation list for any appts that come up sooner.  She said that IF the dr wants to see me sooner, he'll fit me in somehow.

They all know how anxious I am about this because of my previous cancer and I'm hoping if I 'don't' hear from dr. w/i a week (I'd think that's reasonable time to review pathology reports and scanned images), I'll have to 'assume' that there's no cause to worry...I hope.

So this is where I sit for now.  Back to the ole 'wait and see'.

I'm on Day 55 of 84:  29 more days of tx after today.  EOT is May 23rd. 

It's spring time, it's gorgeous out, and once I can get my tummy feeling okay ( no biggy really...it comes and goes...just have to stay in proximity of a throne for a bit till it passes...haha!).

Lynn K:  No, the healthcare system up here is very different than the States.  Though patients records are shared electronically from dr to dr, it's not made available to patients (as far as I know).  I've been getting my BW results from my hep nurse promptly after she receives them; she's great!  Other than that, I need to set up something with my hepatologist or GP somehow. 

Thank you, Lucinda, for the link and the kind words. 

And everyone else's good wishes.

Anyway, that's it for me.

Stay great; feel greater!