Re: Another MRI -- not good news

[Guest guest]

Hi Colleen,

I'm new here to the group and have no advice but just wanted to say

that I really hope you get through this unscathed. I just read a

little on HCC and what I found on the prognosis looks promising.

Please try and wait for the results and listen to the professionals

before thinking the worst (as a mum of 2 under 5 here as well, I know

it's hard to do).

Anyway, I'm thinking of you and will be eagerly awaiting for any

updates.

Take care,

a

>

> Hi everyone,

>

> Sorry I have not been around much -- Safari crashed, summer arrived

and life kind of

> intervenes and gets busy...

>

> I started back on Urso in June and had LFTs checked in July --

numbers looked much

> better -- bili is back in a normal range! My hep wanted me to have

another MRCP to see if

> the dominant stricture had opened up at all, so I had it on Sunday.

>

> I got a call yesterday to come in and meet with one of my hep's

associates -- my doc is on

> vacation at the moment.

>

> The MRI shows a lesion in my liver. Based on location (it is toward

the back, near my

> ribcage), they do not think it is bile duct cancer, which I guess

is the silver lining in all of

> this. It is about 3-4 cm, and they think it is a primary cancer

known as HCC (can't recall

> what that stands for). I had bloodwork done yesterday -- including

INR -- and will have a

> CAT-guided liver biopsy within the week.

>

> I didn't get a warm and fuzzy feeling that this is likely benign

and they are being über-

> cautious. There are two other small spots that are too small to

biopsy, that could be new

> lesions.

>

> Needless to say, as a mom of two children under the age of five,

I'm kind of quietly

> freaking out here. Anyone who has words of advice -- I'm all ears.

>

> Regards,

>

> Colleen

> UC 8/1984

> PSC 8/2000

> possible HCC? 8/2008

>

[Guest guest]

Colleen,

Don't panic. Transplantation for HCC has a very good success rate and

receives a high priority in liver allocation (see page 11, section

3.6.4.4,

http://www.unos.org/PoliciesandBylaws2/policies/pdfs/policy_8.pdf). I

know several people through the local liver transplant support group

who had HCC. Some much more advanced than yours seems to be (and the

biopsy may yet result in a negative finding).

If the lesion is HCC and a liver transplant is the recommended

therapy, I would advise you to seriously consider being listed outside

Region 1 (New England). Centers in regions 3 (the south) and 10

(midwest) have much shorter wait times. Geography is still a factor in

getting a liver transplant, even though it has improved slightly in

recent years.

Tim R

>

> The MRI shows a lesion in my liver. Based on location (it is toward

the back, near my

> ribcage), they do not think it is bile duct cancer, which I guess is

the silver lining in all of

> this. It is about 3-4 cm, and they think it is a primary cancer

known as HCC (can't recall

> what that stands for). I had bloodwork done yesterday -- including

INR -- and will have a

> CAT-guided liver biopsy within the week.

> ...

> Needless to say, as a mom of two children under the age of five, I'm

kind of quietly

> freaking out here. Anyone who has words of advice -- I'm all ears.

[Guest guest]

Colleen,

I know nothing about HCC (just what I just read in reply posts), but I know the one who knows all and you will be in my prayers. As chaim says " you are not alone with this... and if you need to blow steam or vent, we will be more than willing to hear you and support you "

Ian (52) PSC 89

_),_._,___

[Guest guest]

Colleen,

I am sorry to hear about your preliminary diagnosis.

First of all let me explain that I am not a doctor, just

someone who has been on this forum for almost two years and has the " hobby "

of visiting congresses of the Israeli liver research foundation and

hepatologist to lobby for the Israeli liver foundation. During the lectures

(when I can't do any lobbying) I try to sneak in and see what I can learn from

the lectures.

HCC stands for hepatocellular carcinoma and is a serious condition.

HCC is a rare form of cancer in the U.S.

and Europe and even more so in women. I am hoping

that the diagnosis is a mistake. If I remember well, size is an important issue

with HCC, this means that it is better to start treatment sooner rather than

later. If the diagnosis is right, the only advice I can give you is to not let

anyone tell you prognoses of how long you have to live. These prognoses tend to

be self-fulfilling prophesies. If they do tell you such a thing, prove them

wrong by thinking positive and fighting to get better. You have a lot to fight

for, you have a young family and miracles sometimes happen.

Also, remember you are not alone with this. There are

undoubtedly support groups for HCC as well, and if you need to blow steam or

vent, we will be more than willing to hear you and support you.

Success,

Chaim Boermeester, Israel