From stage 3 to (possibly) stage 4

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lizbiz
lizbiz Member Posts: 120
edited March 2014 in Colorectal Cancer #1
Hi everyone,

Well, it looks like I might be in trouble now. I *just* finished my 12th round of FOLFOX a week and a half ago. I had a CT scan to send to the reconnection surgeon at Mass General and an "abnormality" in my liver was found. I saw the CT scans and it's a 2.5-3 cm spot on the back of my liver. The CT report said that it could either be metastasis or a fatty infiltration. I had a follow-up MRI and it was deemed to be "very suspicious" of a metastasis given my history (stage 3b cc).

I'm trying to stay positive, but it's really hard. I've been reading numerous articles about liver toxicity with oxaliplatin. Has anyone experienced fatty infiltration/steatosis in the liver after FOLFOX treatment?? My liver enzymes are totally normal and have been throughout my treatment.

Confused and scared,
Elizabeth

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  • msccolon
    msccolon Member Posts: 1,917 Member
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    liver abnormality
    me too! Follow up has shown no evidence of metastatic disease, however. Fatty liver. I only had 3 rounds of oxi way back when I was first diagnosed but have had 3 full rounds of chemo overall, so I don't doubt there would be some liver fallout. I just stay away from alcohol, except for every now and then and eat beets. The liver is amazingly regenerating, so I'm not concerned. I'm sure yours will be nothing as well. I was IIIB back in 2004, recurrence on my ovary, omentum and fatty tissue in 2006, still here!
    mary
  • lizbiz
    lizbiz Member Posts: 120
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    msccolon said:

    liver abnormality
    me too! Follow up has shown no evidence of metastatic disease, however. Fatty liver. I only had 3 rounds of oxi way back when I was first diagnosed but have had 3 full rounds of chemo overall, so I don't doubt there would be some liver fallout. I just stay away from alcohol, except for every now and then and eat beets. The liver is amazingly regenerating, so I'm not concerned. I'm sure yours will be nothing as well. I was IIIB back in 2004, recurrence on my ovary, omentum and fatty tissue in 2006, still here!
    mary

    Oh THANK YOU!!!
    I've been freaking out ever since I got the call from my oncologist's office.

    Just out of curiosity, was your initial, post surgery scan clean? Right after my colon resection, I had a CT of my liver and nothing was seen. That's why I don't see how I could have a met that big that was seemingly growing throughout my entire treatment.

    Thank you so much for responding!

    Sincerely,
    Elizabeth
  • msccolon
    msccolon Member Posts: 1,917 Member
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    lizbiz said:

    Oh THANK YOU!!!
    I've been freaking out ever since I got the call from my oncologist's office.

    Just out of curiosity, was your initial, post surgery scan clean? Right after my colon resection, I had a CT of my liver and nothing was seen. That's why I don't see how I could have a met that big that was seemingly growing throughout my entire treatment.

    Thank you so much for responding!

    Sincerely,
    Elizabeth

    first scan clean?
    I thought it was because nothing was said about it. However, when my last scan specified something "suspicious" I went to compare it to prior scans and realized i didn't have one set. When i got that, the one that was done right prior to my recurrence surgery, there was the notation of a slightly fatty liver. And I, like you, at that time was extremely small so i'm like fatty liver? from what? Apparently it doesn't really have anything to do with fat in the body! But, like I said, followup scans showed nothing abnormal in my liver, so that's cool!
    mary
  • lizbiz said:

    Oh THANK YOU!!!
    I've been freaking out ever since I got the call from my oncologist's office.

    Just out of curiosity, was your initial, post surgery scan clean? Right after my colon resection, I had a CT of my liver and nothing was seen. That's why I don't see how I could have a met that big that was seemingly growing throughout my entire treatment.

    Thank you so much for responding!

    Sincerely,
    Elizabeth

    This comment has been removed by the Moderator
  • mykidsmommy
    mykidsmommy Member Posts: 76
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    Yup
    I was stage three - with a clean liver after dx - then about 1 year post remission I had a spot on my liver - turned out to be nothing - liver looked good. I did have a tiny spot in my lung and recently had RFA treatment to kill it - SO the fact that one out of tow was clan - was good news for me - Keep the faith and take it one day at a time.
  • Faith88
    Faith88 Member Posts: 55
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    chemo and fatty liver?
    this is very interesting!
    My husband is having his liver evaluated right now as a matter of fact. the first test (ultrasound) showed fatty and enlarged liver and he's going to have to schedule a biopsy.
    I know he had a lesion before chemo that hasn't changed, but the fact that the chemo itself could have destroyed the liver is a very interesting concept. why not? I think of the beating the poor liver must have been taking to try to filter all those chemo drugs.
    I would say that the fact that your liver enzymes are normal is very encouraging.
    I know how scary it is to hear about "spots" but I want to try to be reassuring (even as I freak myself :) that this is not always mets, it seems more common than I knew about that these other fatty lesions occur for one reason or another.
    What is your next test? A biopsy? I hope and pray all is clear, please let us know.
    ~Faith88
  • lizbiz
    lizbiz Member Posts: 120
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    Faith88 said:

    chemo and fatty liver?
    this is very interesting!
    My husband is having his liver evaluated right now as a matter of fact. the first test (ultrasound) showed fatty and enlarged liver and he's going to have to schedule a biopsy.
    I know he had a lesion before chemo that hasn't changed, but the fact that the chemo itself could have destroyed the liver is a very interesting concept. why not? I think of the beating the poor liver must have been taking to try to filter all those chemo drugs.
    I would say that the fact that your liver enzymes are normal is very encouraging.
    I know how scary it is to hear about "spots" but I want to try to be reassuring (even as I freak myself :) that this is not always mets, it seems more common than I knew about that these other fatty lesions occur for one reason or another.
    What is your next test? A biopsy? I hope and pray all is clear, please let us know.
    ~Faith88

    My next step is going to
    My next step is going to Mass General. I thought it was only to be for reconnection surgery, but now, with this new development, they're getting a liver specialist involved. I'm really, really scared by this. I'm trying to stay neutral as there hasn't been any biopsy yet and the lesion is sort of round and not jagged like mets normally are. Also, my oncologist told me that mets are normally pretty dark and obvious, whereas my lesion is very subtle in the CT imagery.

    I'm just hoping and praying that this is simply a benign result of the chemo and not a metastasis.

    I swear, I'm too young for this!
    Elizabeth
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
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    lizbiz said:

    My next step is going to
    My next step is going to Mass General. I thought it was only to be for reconnection surgery, but now, with this new development, they're getting a liver specialist involved. I'm really, really scared by this. I'm trying to stay neutral as there hasn't been any biopsy yet and the lesion is sort of round and not jagged like mets normally are. Also, my oncologist told me that mets are normally pretty dark and obvious, whereas my lesion is very subtle in the CT imagery.

    I'm just hoping and praying that this is simply a benign result of the chemo and not a metastasis.

    I swear, I'm too young for this!
    Elizabeth

    Next step
    Hang in there Elizabeth!! Get those negative, scary thoughts right out of your mind... you and your liver don't need them :)

    For starters, as I believe it was Faith88 I mentioned to the other day... the liver is an amazing organ... it handles a lot of abuse that we give it on a day to day basis. Then, during cancer treatments, we throw poison/toxin at it in the way of chemo and/or radiation... and it still comes through functioning the way it's suppose to. On top of that, we have our Western diet, that... unless you are a total vegan/grains/live off the land/organic everything, there are things we eat and enjoy that the liver has to go "Oh oh... you are going to make me process THIS too??" Some of us are MUCH worse with our diet habits because... well, let's face it, in North America we can afford all the rich foods and processed stuff that tastes good. Whether it's only one or two things or whether we have a diet of yummy tasting foods... our liver has to work through all of it.

    Soooo, is it any wonder that our livers start getting fatty deposits (and no, I don't mean fatty deposits like our belly gets, but fatty remains that hang around and turn into fatty deposits in our liver)? Is it any wonder they get enlarged now and again because of the abuse (intentional or otherwise) that we do to them? But even so, they recover... and carry on... although I'm sure every now and again our livers would love to tell us, "Time out! Give me a break!" :)

    So, you doctors/oncologist are doing exactly what they were trained to do. You find something that you can't explain, but given your cancer history, then we assume the worst and are pleasantly surprised when it turns out to be nothing. But they have to assume the worst and deal with it because, heaven forbid it is something, and they ignored it or wrote it off as "nothing", then all hell would break loose.

    My gut feeling is... it's probably a fatty deposit or benign lesion. Why does my gut feeling say that? You have mentioned only one spot and I don't have the dimensions in front of me but it sounds like it's relatively small. Your onc has said that the colouring is off (not the norm for cancer) and the edges are smooth and not jagged like a cancer (my one spot in my lung is very jagged, so no doubt it is cancer). There are no other spots... so why the one just popping up on it's own, not jagged and light in colour?

    Soooo let go of the negative thought and replace this with a "Damn! I have a fatty deposit on my liver that has just scared the daylights out of me. I don't need this kind of fear, thank you very much... please have whatever tests confirm that it is what it is... a fatty deposit." Whether they decide to take it out and ease your mind, or whether they can do a biopsy of it, and ease your minde... just replace your scary thoughts with fatty deposit thoughts.

    You are going to be just fine! Like you say... you are way too young, and from your picture, way too pretty to have to be worrying about this kind of stuff. You have way too many more years of life to be lived left in you and never, ever give up on that way of thinking. Send out the thoughts of what you really believe and you will get them back tenfold!

    Huggggggs,

    Cheryl
  • lizbiz
    lizbiz Member Posts: 120
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    Next step
    Hang in there Elizabeth!! Get those negative, scary thoughts right out of your mind... you and your liver don't need them :)

    For starters, as I believe it was Faith88 I mentioned to the other day... the liver is an amazing organ... it handles a lot of abuse that we give it on a day to day basis. Then, during cancer treatments, we throw poison/toxin at it in the way of chemo and/or radiation... and it still comes through functioning the way it's suppose to. On top of that, we have our Western diet, that... unless you are a total vegan/grains/live off the land/organic everything, there are things we eat and enjoy that the liver has to go "Oh oh... you are going to make me process THIS too??" Some of us are MUCH worse with our diet habits because... well, let's face it, in North America we can afford all the rich foods and processed stuff that tastes good. Whether it's only one or two things or whether we have a diet of yummy tasting foods... our liver has to work through all of it.

    Soooo, is it any wonder that our livers start getting fatty deposits (and no, I don't mean fatty deposits like our belly gets, but fatty remains that hang around and turn into fatty deposits in our liver)? Is it any wonder they get enlarged now and again because of the abuse (intentional or otherwise) that we do to them? But even so, they recover... and carry on... although I'm sure every now and again our livers would love to tell us, "Time out! Give me a break!" :)

    So, you doctors/oncologist are doing exactly what they were trained to do. You find something that you can't explain, but given your cancer history, then we assume the worst and are pleasantly surprised when it turns out to be nothing. But they have to assume the worst and deal with it because, heaven forbid it is something, and they ignored it or wrote it off as "nothing", then all hell would break loose.

    My gut feeling is... it's probably a fatty deposit or benign lesion. Why does my gut feeling say that? You have mentioned only one spot and I don't have the dimensions in front of me but it sounds like it's relatively small. Your onc has said that the colouring is off (not the norm for cancer) and the edges are smooth and not jagged like a cancer (my one spot in my lung is very jagged, so no doubt it is cancer). There are no other spots... so why the one just popping up on it's own, not jagged and light in colour?

    Soooo let go of the negative thought and replace this with a "Damn! I have a fatty deposit on my liver that has just scared the daylights out of me. I don't need this kind of fear, thank you very much... please have whatever tests confirm that it is what it is... a fatty deposit." Whether they decide to take it out and ease your mind, or whether they can do a biopsy of it, and ease your minde... just replace your scary thoughts with fatty deposit thoughts.

    You are going to be just fine! Like you say... you are way too young, and from your picture, way too pretty to have to be worrying about this kind of stuff. You have way too many more years of life to be lived left in you and never, ever give up on that way of thinking. Send out the thoughts of what you really believe and you will get them back tenfold!

    Huggggggs,

    Cheryl

    Thank you so much, Cheryl!
    I really needed to hear that!

    Hugs!
    Elizabeth
  • Kanort
    Kanort Member Posts: 1,272 Member
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    Thinking of You!
    Hi Liz,

    I am so sorry you are having to worry about your liver instead of being able to just focus on your reconnection surgery. Hopefully, this will prove to be something benign. I have spots on my lungs that have been noted as highly suspicious of metastasis, but they have remained unchanged for over four years. So, sometimes the radiologist will interpret something as cancer just because of our history. My spots also appeared while I was taking chemo. One was even biopsied.

    Back in 2003, I was one of the first patients to receive Folfox for stage 3. It was originally only approved for stage 4. I received 135 mg. of oxaliplatin which caused toxic hepatitis....my liver enzymes were way off the charts! I think the standard dosage now is 85mg. Anyway, after my bloodcounts recovered, my oncologist continued with my infusions but increased the oxaliplatin dosage time to three hours rather than two.

    Please keep us posted on your findings. Sending you my very best.

    Hugs,

    Kay
  • msccolon
    msccolon Member Posts: 1,917 Member
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    Kanort said:

    Thinking of You!
    Hi Liz,

    I am so sorry you are having to worry about your liver instead of being able to just focus on your reconnection surgery. Hopefully, this will prove to be something benign. I have spots on my lungs that have been noted as highly suspicious of metastasis, but they have remained unchanged for over four years. So, sometimes the radiologist will interpret something as cancer just because of our history. My spots also appeared while I was taking chemo. One was even biopsied.

    Back in 2003, I was one of the first patients to receive Folfox for stage 3. It was originally only approved for stage 4. I received 135 mg. of oxaliplatin which caused toxic hepatitis....my liver enzymes were way off the charts! I think the standard dosage now is 85mg. Anyway, after my bloodcounts recovered, my oncologist continued with my infusions but increased the oxaliplatin dosage time to three hours rather than two.

    Please keep us posted on your findings. Sending you my very best.

    Hugs,

    Kay

    dosage of oxi
    so you are one of the many all who now receive oxi standard can thank! I was just reading an article earlier about dosing of Xeloda and how they are working on what is to be the standard, toxic levels, etc. I am sure soon they will have a standard in that as well and people who come later will just take it in stride that they have the dosage right!
    mary
  • traci43
    traci43 Member Posts: 773 Member
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    fgatty liver - me too!
    Elizabeth - I had 12 rounds of FOLFOX with Avastin in fall '07 for stage IV colon cancer. My liver enzymes were fine the whole time, but my post-treatment CT Scan showed a fatty liver. My Doctor wasn't too worried and I'm almost positive that my 6-moth CT scan was clear. If not then the 12-month definitely was. Remember these are diagnostic tools and open to interpretation. What about a PET Scan, that would show metabolic activity in the cancer cells, if there is any.

    Just hold tight and think happy thoughts! Sounds like your Doctor is being more cautious calling by the liver specialist rather than really worried, based on his discussion of what liver mets look like on a CT Scan. Keep us posted! Traci
  • lizbiz
    lizbiz Member Posts: 120
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    traci43 said:

    fgatty liver - me too!
    Elizabeth - I had 12 rounds of FOLFOX with Avastin in fall '07 for stage IV colon cancer. My liver enzymes were fine the whole time, but my post-treatment CT Scan showed a fatty liver. My Doctor wasn't too worried and I'm almost positive that my 6-moth CT scan was clear. If not then the 12-month definitely was. Remember these are diagnostic tools and open to interpretation. What about a PET Scan, that would show metabolic activity in the cancer cells, if there is any.

    Just hold tight and think happy thoughts! Sounds like your Doctor is being more cautious calling by the liver specialist rather than really worried, based on his discussion of what liver mets look like on a CT Scan. Keep us posted! Traci

    Thanks, Traci!
    They may order a PET scan for me at Mass General. I've was being treated at a small hospital in mid-NH and I don't think they even have a PET scan machine. I received excellent treatment, but again, it is a small hospital and I'm sure they haven't seen many cases like mine. So, I am happy to be going to "the right place" (according to my oncologist).

    I'm just having a lot of post-treatment anxiety. I don't think I've really dealt with the emotional impact of this disease yet. I was so hell-bent on getting through treatment and going forward with the reconnection. All of this has really thrown me for a loop!

    Thanks again,
    Elizabeth
  • Mike49
    Mike49 Member Posts: 261
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    chiming in
    Hey, From what I read the early mets to the liver are resectable and can return you to NED.. Its scary, I am stage IIIC, Right Hemi-colectomy and PET and CT showed clean liver prior to surgery and PET prior to Chemo. My Pet came back goofy, I had post op infection and 200 cc pocket of infection. The PET can't be completely read since there is so much scar and granular tissue from the healing infected site. My treatment regimen is includes AVASTIN which usually is reserved for stage four. Since the PET was so screwed up my Onc said your, young, look like you feel great lets throw everything at this even though I don't trust the PET much either.

    Good luck, I understand fear and anxiety. I got some ativan for sleep and I recently switched to vegetarian diet and work hard at staying positive and normal with my kids and living life. That said, this disease is psychologically draining. We are all here for you. Cherylhutch is a great resource. When I am weak her and many others on this site pick me up.

    I hear you and I feel its a fatty deposit, worst case you are going to beat that too.

    Mike
  • polarprincess
    polarprincess Member Posts: 202 Member
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    Mike49 said:

    chiming in
    Hey, From what I read the early mets to the liver are resectable and can return you to NED.. Its scary, I am stage IIIC, Right Hemi-colectomy and PET and CT showed clean liver prior to surgery and PET prior to Chemo. My Pet came back goofy, I had post op infection and 200 cc pocket of infection. The PET can't be completely read since there is so much scar and granular tissue from the healing infected site. My treatment regimen is includes AVASTIN which usually is reserved for stage four. Since the PET was so screwed up my Onc said your, young, look like you feel great lets throw everything at this even though I don't trust the PET much either.

    Good luck, I understand fear and anxiety. I got some ativan for sleep and I recently switched to vegetarian diet and work hard at staying positive and normal with my kids and living life. That said, this disease is psychologically draining. We are all here for you. Cherylhutch is a great resource. When I am weak her and many others on this site pick me up.

    I hear you and I feel its a fatty deposit, worst case you are going to beat that too.

    Mike

    hi
    hi, i am a dietitian and work in hospital charts all the time and i cannot even tell you how many post chemo/cancer patients we have that have had this scare only for it to be a fatty liver. It is EXTREMELY common, and very often described as more of a "spot" on the scan rather than lesions. I wish doctors would figure out a way to determine what these are before they scare the bejesus out of patients. Good luck to you that you get the best of news!!
  • pamness
    pamness Member Posts: 524 Member
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    lizbiz said:

    Thanks, Traci!
    They may order a PET scan for me at Mass General. I've was being treated at a small hospital in mid-NH and I don't think they even have a PET scan machine. I received excellent treatment, but again, it is a small hospital and I'm sure they haven't seen many cases like mine. So, I am happy to be going to "the right place" (according to my oncologist).

    I'm just having a lot of post-treatment anxiety. I don't think I've really dealt with the emotional impact of this disease yet. I was so hell-bent on getting through treatment and going forward with the reconnection. All of this has really thrown me for a loop!

    Thanks again,
    Elizabeth

    I am sure this is a very scary time
    I was treated at Mass General for stage 3A colon cancer - two nods - and 18 months out of treatmentand am ned. I have a number of bumps along with way, but so far so good. My experiences with the doctors and mass general have been quite good. I was diagnosed January 2007. Not sure where are sending you, but my oncologist was/is Dr, David Ryan and his nurse practitioner is Terry.

    Follow up, call backs have been great.

    I would be happy to answer question you might about your experience at MGH

    All the best,

    Pam
  • hi
    hi, i am a dietitian and work in hospital charts all the time and i cannot even tell you how many post chemo/cancer patients we have that have had this scare only for it to be a fatty liver. It is EXTREMELY common, and very often described as more of a "spot" on the scan rather than lesions. I wish doctors would figure out a way to determine what these are before they scare the bejesus out of patients. Good luck to you that you get the best of news!!

    This comment has been removed by the Moderator
  • KathiM
    KathiM Member Posts: 8,028 Member
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    I've named my 3.....
    I have 3 spots on my liver. First time they were reported, I freaked. After further probing, they are 'just' fatty polyps. Now, I just asked if they have changed any. Whew! As well as patience, the beast seems to teach acceptance...lol!

    Hope everything goes well!

    Hugs, Kathi
  • lizbiz
    lizbiz Member Posts: 120
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    KathiM said:

    I've named my 3.....
    I have 3 spots on my liver. First time they were reported, I freaked. After further probing, they are 'just' fatty polyps. Now, I just asked if they have changed any. Whew! As well as patience, the beast seems to teach acceptance...lol!

    Hope everything goes well!

    Hugs, Kathi

    Thank you so much for the words of encouragement!
    We're off to Mass General on Tuesday for a repeat MRI and then again on Thursday for a PET scan and meetings with the colorectal surgeon and the liver specialist. I'm somewhat encouraged by the fact that want to do repeat scans on me. So, we'll see what happens!

    Thanks again, everyone who responded.

    Crossing my fingers for a fatty liver,
    Elizabeth