Questions for Stage 4 liver folks ???

[CRguy]

Preamble :

Going for the follow up exam with Onc tomorrow.
CT = ????? liver thingie but they are not too worried it's a met
U/sound presults = not too worried, looks ok
Bloods = normal

SO ... never being satisfied with good news I am into PRO-active mode and invite any of our folks here to comment :
We have a Lung Thang Gang of which I am a charter member,
the Olymphians .. of which I am not
and now I think we need a Hepatic Homies group to discuss liver "issues" !
All in favor

Question ?

IF YOU'VE HAD A LIVER ISSUE ... related to CRC .....

knowing what you know NOW, whether it turned out to be something or not .....
What questions would you want answered moving forward, about follow up schedules, second opinions, alternate imagings, blood work etc.

Especially interested in folks who had the " well it looks OK now... " BUTT then went on to have actual issues develop later ?????

disclaimer : I am not upset or worried about tomorrow.
I am not in sympathy mode ... I am in battle mode.

I want to try to get as much feedback from the Hepatic Homies group to throw some stuff into the conversation tomorrow,
which I may not have considered ????? Lung stuff and rectal stuff ... I am good with ...

BUTT.....
since THIS is the best online resource with the BEST educated membership, ..... school books AND real world ! ......
I want to be sure all bases are covered and hopefully this topic can be a bit of a resource for new members who find themselves just entering the Hepatic Homies group

CRguy on the Journey
Stage IVa survivor
Charter member of the Lung Thang Gang
currently reviewing options on joining the Hepatic Homies group ....BUTT may prefer to pass on it this time

Cheers ALL !
Harmony

[jillbugs4110]

I like this I often feel the liver thang....is as a bigger curse I'm not sure

[Cb75]

I had liver issues. When I was diagnosed, I had a liver met. At the time, it was 5 mm and my first general surgeon was sure it was not cancer. After a ultra sound, and then an MRI, it was confirmed to be in fact a met. I had an open liver resection a few months after my colon resection. Section six of my liver was removed. I had two met (one was a 'satellite' met). The 5 mm met had grown to 1.5 cmd and the small one was about 5 mm. During the surgery for my liver a suspicious spot was biopsied in section 4, it turned out not to be cancer but a hemogenomia (sp?). So, a spot could be something, it could be nothing.

I had an open liver surgery. All in all it went very well. However, I did need a blood transfusion. After two days in a type of ICU, I was moved to a room and then discharged. Since the surgery my liver has been NED and I am told that it looks very nice and has regrown very well. It's also made it through almost a year and a half of FOLFIRI and avastin with little or no damage.

I hope its nothing. Let me know if you want to chat

cb <3

[mom_2_3]

In October of 2012 my scan report noted:

"HEPATOBILIARY: Status post left hepatic resection and
wedge resection of posterior right lobe. Stable appearance of resection
margins. 6 mm enhancing lesion in the posterior right lobe of liver,
images 2/47 and 103b/68, is new from prior studies. Status post
cholecystectomy. Minimal prominence of intrahepatic biliary tree."

Follow-up of an MRI a week later noted:

"Since CT from October 3, 2012, no change in segment 7 liver lesion
probably representing focal nodular hyperplasia or small perfusional
abnormality. No suspicious liver lesion."

So it sounded a bit worrisome from the CT but the follow-up MRI gave the all clear. Each CT scan since then (about 6 or 7) noted the unchanging nature of the lesion. My most recent CT from end of May said, "Unchanged probable hemangioma" in the liver.

So in my case something that appeared new wasn't anything to worry about. If it was anything it has been unchanged for almost 3 years.

HTH,
Amy

[CRguy]

Carm and Amy ...
.... KICKS ass ... exactly what I am looking for

personally I AM a fan of MRIs and
will get back to the forum tomorrow with more follow up

Cheers all !
CR

[Kiwi Debz]

CR,

I'm a liver folk

My initial DX showed two liver mets in section VI of my liver. They respected during the initial surgery, July 2014 when they did the hemicolectomy and got them both with good margin. Showed up activity in all PETs following so in Feb this year they went back in, another resection plus micro wave ablation at the same time butt turned out to be benign, surgical trauma!

Last scan in May showed no activity in liver and liver has recovered well and no issues with blood work and not too much damage from chemo. I never realized that the liver does not grow back where they resect but just grows bigger elsewhere.

If you can resect I would say go for it .....

Deb

[Robinf]

I'm a newly dx liver folk. Prior to few weeks ago, I was 'lucky' enough to only have peri mets - but after a ct on 7/13 (confirmed by a PET ON 7/20) i'm now the lucky owner of a liver met. I start FOLFIRI on 8/12.

I've had a fair amount of pain on the right size, some a little right of center, in my back under my ribs and most recently my right shoulder. It was getting worse, I suspected pleurisy, talked to my onc's nurse today, had a hastily sched chest ct to rule out pulmonary embolism which it did. RN said it could be pain due to my liver met, but didnt really know.

I havent had any bloating or abnormal liver enzymes in lab work.

At this point, all I know is that I hurt and its a new sorta hurt and I dont like and it pisses me off!

So now to go pop a pain pill and hopefully relax.

[NedPlease]

I don't know if knowing my situation helps at all but...or butt...
When the PET was done prior to VATS in 2011, the thoracic surgeon questioned something on my liver. I saw my liver surgeon for further eval and he wanted an MRI. MRI still raised questions and another one was done 6 mo later. CTs were being done at 3 mo interval. For the next two years the MRIs were done at 6 mo interval alternating with the CTs. After two years of this schedule, liver surgeon was convinced it was not met activity and cut me loose. That was 2013. Under the onc's supervision since then, I've gradually bumped out to almost a yearly CT scan.
So, CR, my liver thingie was not a met and probably surgical scarring.

Best to you and thanks for all you do here,
N

[Bev G]

Hi CR,

It's always something, huh? Really sorry you're having to deal with this new unknown.

I think you know my story... 5 x 6 cm lesion in posterior caudate lobe at diagnosis in 12/09. Colon resection in December, liver resection in 4/10. Entire caudate lobe removed. No new cancer since then. At that time I didn't know sh*t from shinola about liver stuff. I had no idea how lucky I was. 1) The caudate lobe has no vascular communication with the rest of the liver--likely sparing me from liver spread. 2) My tumor was 2-3mm from my IVC 3) Liver transplant surgeon tracked ME down while I was hospitalized for a colon resection complication and wanted to operate immediately 4) tumor board wanted me to have 6 rounds of FOLFIRI before resection (I was only able to do 3 (grade IV diarrhea and 4 hospitalization over 3 rounds) I think having a transplant surgeon was the best cancer-thing that happened to me. The proximity to vascular stuff didn't phase him, and I am so grateful that he popped in to my life. Recovery was a 7 month bear, butt still here 5 years later, apparently cancer-free.

I hope and pray yours is nothing, butt if you need knife-intervention, please contemplate transplant surgeon rather than general liver surgeon.

Sending you very best wishes.

Love,

Bev

[Rob in PA]

I'm a hepatic homie and a lung thang gang member. The homie membership, in my opinion, does not come with any priveledges and I would suggest AVOIDING joining this group at all costs.!

Butt, if you do decide to join, I'll fill you in on the hazing I went through before being full fledged.



BAck after mini sabatical....
Rob

[Crystald]

Hepatic homie here. Non resectable (so they say). Know about liver tumor pain.

At infusion now #2 dose of vectibix.

[jalusa]

If you truly end up with a liver met or two I would consider the HAI pump. It does seem to prevent recurrence.

[CRguy]

Again .. MANY thanks to the folks here for sharing their info.
I will update the Review of my Journey so far -> UPDATED topic with all the details...
BUTT apparently I have been refused official entry into the Hepatic Homies group
at this time.
Official report is fat infiltration with no cysts or masses present !

Cheers and Harmony All

CR

[BrownBagger]

BEST NEWS I've heard in a long time.

Congratulations my friend.

Treat that fatty liver to some good scotch or wine. Go ahead. Do it.

[CRguy]

Damn straight buddy !

probably how I got it in the first place