We didn’t expect this…. Follow up to ‘Just when we thought we had made it to 5 years’

Mazj

So Brian had his CT scan on Monday and we have been waiting on tenterhooks for today for the oncologist to give us the results.

The first part was good – the chemo appears to be holding the progression of the cancer.

However after that we simply weren’t prepared for the news of a sizeable collection of fluid on his liver – or more accurately in the capsule surrounding the liver. There was only a hint of it in July. It measures ‘approximately 173mm in lateral diameter, 93mm in AP depth and, at maximum, approximately 145mm in superoinferior diameter. There is associated ill-defined decreased attenuation in segment 5-6 of the liver now measuring 33mm in diameter, consistent with a metastatic focus. These appearances have significantly increased since July 2011.’

Although we asked, we are still not quite sure what this means. The oncologist has never seen this before – like Brian’s 6 year recurrence. There is no pain associated with this. He is just forever tired. The oncologist is sending us off to a liver surgeon next week for further testing and treatment.

So we had a bottle change today (5FU) and next week they will just change dressings and flush the PICC line leaving any resumption of chemo until after the liver examination/treatment.

So not only more waiting, which is tough as you are all well aware, but not quite knowing how this will resolve itself is scaring me. It doesn’t sound good. If anyone has any insight, experience etc with these complications I would love to hear your thoughts.

I check this board morning and night and am constantly amazed at the roller coaster of emotions and situations experienced by so many of you. There is also a lot of comfort in that. I don’t feel so alone.
Thinking of all of you, and thank you for the care and concern shown to everybody.

Marilyn

dodger21

Thinking of you
I can't give any advice on your questions sorry, but I just wanted to let you know I'm thinking of you amongst all the bad news this board has had in the past 24 hrs.
Danielle

jss2011

Hi Marilyn
I am new here, my husband was diagnosed in June this yr, so I have no advise to offer you. I read everything and still feel like I know nothing.
The fact that they are sending Brian to a surgeon is good news isn't it?
I can relate to the roller coaster and the waiting, stay strong.

Julie

chemosmoker

Medical term search and information...
Marilyn,

Grateful to hear the chemo is holding the cancer at bay for now. As for the liver issues I did some reading. I know that the word Ascites is branded about here allot....and Michael is currently suffering from some from of this right now with that magic vacuum pump he is living with, but here is what I find in researching fluid accumulation around the liver. I hope this might lead you in the right direction? Just hoping to help as I am no doctor!

Here is what I can find:
________________________________________________________________________________________

Ascites (/əˈsaɪtiːz/ ə-sy-teez, from Greek askites, "baglike")[1] is a gastroenterological term for an accumulation of fluid in the peritoneal cavity. The medical condition is also known as peritoneal cavity fluid, peritoneal fluid excess, hydroperitoneum or more archaically as abdominal dropsy. Although most commonly due to cirrhosis and severe liver disease, its presence can portend other significant medical problems.
_________________________________________________________________________________________
And this:

A collection of fluid around the liver (perihepatic fluid) is not specific for any one condition and can be due to a wide number of causes. The fluid could be ascites (an excess of abdominal cavity fluid), blood, urine, chyle (lymphatic system fluid), bile (digestive secretion produced by the liver and stored in the adjacent gallbladder), pancreatic juice (digestive secretion from the pancreas), or pus. With all of these fluid sources, the list of causes may include tumor, obstruction (e.g., bile duct blockage by a gallstone), trauma, autoimmune disease, heart failure, infection, abscess, medication (e.g., Tylenol overdose) or toxin, cirrhosis (liver scarring with dysfunction or failure), etc. Unfortunately, the symptoms you report (headache, ear ache, sore throat, swollen glands, fever, nausea, vomiting, weakness, and loss of appetite) are also nonspecific with countless possible causes. Your doctor and/or one or more specialists (e.g., gastroenterologist, or digestive system specialist) will obtain appropriate labs and imaging studies to confirm the underlying diagnosis for the perihepatic fluid.
______________________________________________________________________________________

Hope some of this helped?

God bless. I will be watching for more informed posts as well.
Praying for you both,
-Eric

Mazj

chemosmoker said:

Medical term search and information...
Marilyn,

Grateful to hear the chemo is holding the cancer at bay for now. As for the liver issues I did some reading. I know that the word Ascites is branded about here allot....and Michael is currently suffering from some from of this right now with that magic vacuum pump he is living with, but here is what I find in researching fluid accumulation around the liver. I hope this might lead you in the right direction? Just hoping to help as I am no doctor!

Here is what I can find:
________________________________________________________________________________________

Ascites (/əˈsaɪtiːz/ ə-sy-teez, from Greek askites, "baglike")[1] is a gastroenterological term for an accumulation of fluid in the peritoneal cavity. The medical condition is also known as peritoneal cavity fluid, peritoneal fluid excess, hydroperitoneum or more archaically as abdominal dropsy. Although most commonly due to cirrhosis and severe liver disease, its presence can portend other significant medical problems.
_________________________________________________________________________________________
And this:

A collection of fluid around the liver (perihepatic fluid) is not specific for any one condition and can be due to a wide number of causes. The fluid could be ascites (an excess of abdominal cavity fluid), blood, urine, chyle (lymphatic system fluid), bile (digestive secretion produced by the liver and stored in the adjacent gallbladder), pancreatic juice (digestive secretion from the pancreas), or pus. With all of these fluid sources, the list of causes may include tumor, obstruction (e.g., bile duct blockage by a gallstone), trauma, autoimmune disease, heart failure, infection, abscess, medication (e.g., Tylenol overdose) or toxin, cirrhosis (liver scarring with dysfunction or failure), etc. Unfortunately, the symptoms you report (headache, ear ache, sore throat, swollen glands, fever, nausea, vomiting, weakness, and loss of appetite) are also nonspecific with countless possible causes. Your doctor and/or one or more specialists (e.g., gastroenterologist, or digestive system specialist) will obtain appropriate labs and imaging studies to confirm the underlying diagnosis for the perihepatic fluid.
______________________________________________________________________________________

Hope some of this helped?

God bless. I will be watching for more informed posts as well.
Praying for you both,
-Eric

Further developments
Thank you to those folk who read our story and left such kind comments. We have a new update if you are interested.

Thanks Eric for the information. I appreciate your care and effort.

A visit to the oncologist always seems to throw up more questions than answers!
So chemo is not doing anything to whatever is in the liver? And what is the fluid – blood, bile? We were so shocked. We thought things were going well despite Brian feeling crappy with chemo. And there was not going to be a break – the oncologist wanted him to have 6 months worth of chemo.

We continued to feel a little stunned for a while and found it difficult to grasp how severe or dangerous it was or might be due to no real new information. Brian worried that he might have an agonising journey with liver cancer and I feared him not even making it through an aspiration! The mind takes you into places you don’t want to go.
We tried hard to keep going and we usually only allow ourselves ‘wallow’ time immediately after bad news before finding things with which to occupy ourselves. Whether it is fact or not, Brian thought he could ‘feel’ his liver and occasionally became very despondent. We seem to have spent so much of 2011 just waiting. Our plans for a break in November have now appeared in a different form. With Brian off chemo while the liver is being investigated he still has to have a weekly PICC line flush so we aren’t going anywhere!

Anyway, we finally got to meet our liver specialist. I had checked him out online and he seems very competent and well-trained (in the US!) He was very thorough, asking lots of questions to get to know his new patient and wants to chase up every film Brian has ever had in order to have a complete dossier on the computer. (We have had tests at different hospitals) He talks about putting Brian’s case to the surgical team at the Austin Hospital – which also includes our oncologist – for their considered opinion. He is all for doing nothing at the moment as rushing in and draining the fluid may not be the wisest option. So we have an ultrasound next week for confirmation of the fluid type. At the moment he suspects that it is blood and could possible resolve itself and be reabsorbed back into the liver.
We were there for about 30 minutes and managed to discuss lots of things, not the least of which included why the possibility of a ‘debriding’ or ‘debulking’ of the abdomen to remove the peritoneal nodules had not been considered. Although he is not necessarily recommending it, he wants to make sure that we are aware of all possible options before continuing with any treatment. This sounds horribly scary to us as it is not commonly done here! So we left feeling stunned (again!) and not sure what to think. He planned to ring us in a week.

However, next morning he rang us and completely surprised us with new news. He had spoken with our IL surgeon and the oncologist and reviewed the latest CT scan which was now on the computer and allowed a closer, more detailed look. He is now pretty sure that it is fluid other than blood! If there are no symptoms (which there aren’t at the moment) then he suggests leaving it and only draining if there are any issues. He talked about the surgery again and is still not sure of the right answer. He did say that the situation didn’t look alarming though.

Needless to say all of this has resulted in a large sigh of relief from us and a feeling that a load has been lifted from our shoulders. So we wait some more…

Marilyn

(PS. Last night I wrote all of this straight onto the board and somehow hit the wrong button and lost the lot! Just now there was an electricity surge as soon as I had finished typing and my computer went off! I recovered most of this (in Word) but still had to remember what I had written before. I bet it sounded better then! Lesson learned.)

Ginny_B

Mazj said:

Further developments
Thank you to those folk who read our story and left such kind comments. We have a new update if you are interested.

Thanks Eric for the information. I appreciate your care and effort.

A visit to the oncologist always seems to throw up more questions than answers!
So chemo is not doing anything to whatever is in the liver? And what is the fluid – blood, bile? We were so shocked. We thought things were going well despite Brian feeling crappy with chemo. And there was not going to be a break – the oncologist wanted him to have 6 months worth of chemo.

We continued to feel a little stunned for a while and found it difficult to grasp how severe or dangerous it was or might be due to no real new information. Brian worried that he might have an agonising journey with liver cancer and I feared him not even making it through an aspiration! The mind takes you into places you don’t want to go.
We tried hard to keep going and we usually only allow ourselves ‘wallow’ time immediately after bad news before finding things with which to occupy ourselves. Whether it is fact or not, Brian thought he could ‘feel’ his liver and occasionally became very despondent. We seem to have spent so much of 2011 just waiting. Our plans for a break in November have now appeared in a different form. With Brian off chemo while the liver is being investigated he still has to have a weekly PICC line flush so we aren’t going anywhere!

Anyway, we finally got to meet our liver specialist. I had checked him out online and he seems very competent and well-trained (in the US!) He was very thorough, asking lots of questions to get to know his new patient and wants to chase up every film Brian has ever had in order to have a complete dossier on the computer. (We have had tests at different hospitals) He talks about putting Brian’s case to the surgical team at the Austin Hospital – which also includes our oncologist – for their considered opinion. He is all for doing nothing at the moment as rushing in and draining the fluid may not be the wisest option. So we have an ultrasound next week for confirmation of the fluid type. At the moment he suspects that it is blood and could possible resolve itself and be reabsorbed back into the liver.
We were there for about 30 minutes and managed to discuss lots of things, not the least of which included why the possibility of a ‘debriding’ or ‘debulking’ of the abdomen to remove the peritoneal nodules had not been considered. Although he is not necessarily recommending it, he wants to make sure that we are aware of all possible options before continuing with any treatment. This sounds horribly scary to us as it is not commonly done here! So we left feeling stunned (again!) and not sure what to think. He planned to ring us in a week.

However, next morning he rang us and completely surprised us with new news. He had spoken with our IL surgeon and the oncologist and reviewed the latest CT scan which was now on the computer and allowed a closer, more detailed look. He is now pretty sure that it is fluid other than blood! If there are no symptoms (which there aren’t at the moment) then he suggests leaving it and only draining if there are any issues. He talked about the surgery again and is still not sure of the right answer. He did say that the situation didn’t look alarming though.

Needless to say all of this has resulted in a large sigh of relief from us and a feeling that a load has been lifted from our shoulders. So we wait some more…

Marilyn

(PS. Last night I wrote all of this straight onto the board and somehow hit the wrong button and lost the lot! Just now there was an electricity surge as soon as I had finished typing and my computer went off! I recovered most of this (in Word) but still had to remember what I had written before. I bet it sounded better then! Lesson learned.)

Let's keep our hopes and
Let's keep our hopes and prayers going for continued positive good news. Hugs to you both.

TerryV

Mazj said:

Further developments
Thank you to those folk who read our story and left such kind comments. We have a new update if you are interested.

Thanks Eric for the information. I appreciate your care and effort.

A visit to the oncologist always seems to throw up more questions than answers!
So chemo is not doing anything to whatever is in the liver? And what is the fluid – blood, bile? We were so shocked. We thought things were going well despite Brian feeling crappy with chemo. And there was not going to be a break – the oncologist wanted him to have 6 months worth of chemo.

We continued to feel a little stunned for a while and found it difficult to grasp how severe or dangerous it was or might be due to no real new information. Brian worried that he might have an agonising journey with liver cancer and I feared him not even making it through an aspiration! The mind takes you into places you don’t want to go.
We tried hard to keep going and we usually only allow ourselves ‘wallow’ time immediately after bad news before finding things with which to occupy ourselves. Whether it is fact or not, Brian thought he could ‘feel’ his liver and occasionally became very despondent. We seem to have spent so much of 2011 just waiting. Our plans for a break in November have now appeared in a different form. With Brian off chemo while the liver is being investigated he still has to have a weekly PICC line flush so we aren’t going anywhere!

Anyway, we finally got to meet our liver specialist. I had checked him out online and he seems very competent and well-trained (in the US!) He was very thorough, asking lots of questions to get to know his new patient and wants to chase up every film Brian has ever had in order to have a complete dossier on the computer. (We have had tests at different hospitals) He talks about putting Brian’s case to the surgical team at the Austin Hospital – which also includes our oncologist – for their considered opinion. He is all for doing nothing at the moment as rushing in and draining the fluid may not be the wisest option. So we have an ultrasound next week for confirmation of the fluid type. At the moment he suspects that it is blood and could possible resolve itself and be reabsorbed back into the liver.
We were there for about 30 minutes and managed to discuss lots of things, not the least of which included why the possibility of a ‘debriding’ or ‘debulking’ of the abdomen to remove the peritoneal nodules had not been considered. Although he is not necessarily recommending it, he wants to make sure that we are aware of all possible options before continuing with any treatment. This sounds horribly scary to us as it is not commonly done here! So we left feeling stunned (again!) and not sure what to think. He planned to ring us in a week.

However, next morning he rang us and completely surprised us with new news. He had spoken with our IL surgeon and the oncologist and reviewed the latest CT scan which was now on the computer and allowed a closer, more detailed look. He is now pretty sure that it is fluid other than blood! If there are no symptoms (which there aren’t at the moment) then he suggests leaving it and only draining if there are any issues. He talked about the surgery again and is still not sure of the right answer. He did say that the situation didn’t look alarming though.

Needless to say all of this has resulted in a large sigh of relief from us and a feeling that a load has been lifted from our shoulders. So we wait some more…

Marilyn

(PS. Last night I wrote all of this straight onto the board and somehow hit the wrong button and lost the lot! Just now there was an electricity surge as soon as I had finished typing and my computer went off! I recovered most of this (in Word) but still had to remember what I had written before. I bet it sounded better then! Lesson learned.)

Not alarming is *good*
Glad that you and Brian have received some decent news. The words "not alarming" have got to be nice to hear.

I hope you are able to wait with calm and peace. Sorry that you won't be able to get away. Perhaps soon!

Prayers to you both!

Terry
Wife to Nick, age 48
dx T3N2M0 05/19/11
THE 09/08/11