Possible liver mets? How do I cope without knowing?

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dearjilly
dearjilly Member Posts: 102
edited June 2014 in Not Diagnosed With a Recurrence or Metastases but Concerned

Hello,

I was diagnosed with stage IIIa bc in November 2011 and since then I've had three "strongly suspicious" spots on my liver.  Too small to biopsy.  Now, after chemotherapy, one spot is gone, one went from 13mm to 3mm and the other from 5mm to 2mm.  I know that this is good news, but the question is, how does one cope without knowing what is really going on?  The oncologist said that it could also be cysts, so I hang on to thinking that they are just cysts but you know how the mind can sometimes wander.  Has anyone had the same experience as me?  How did you deal with this?

Thanks, Jill 

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  • barsco1963
    barsco1963 Member Posts: 2,119
    edited April 2012

    Jill - Try to focus on the shrinkage of the spots. I know that not knowing what it is for sure is hard, but knowing that they are getting smaller is definately a good thing. I would hope that your onc will be keeping an eye on your liver. Have you been scheduled for any further scans?

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  • lago
    lago Member Posts: 17,186
    edited April 2012

    Jill I had 3 spots on my liver found in scans before surgery/chemo/herceptin. My onc scanned me again after chemo (2.7.2011). Still there no change. Scanned me again (2.7.2012).  No change in 2 of them and the other went away. Now my onc (after seeing her last week) wants to scan me in 6 months! I was WTF if no change then why? She said because I was further out from chemo.

    They think they might be cysts but again too small to know. I refuse to sit and worry about this. Until someone tells me they aren't cysts I have no reason to think otherwise.I too was a bit panicked when she said she wanted to scan in 6 months but I've moved on. Stress is not good for us.

    So we are NED, right! ♥ ♥ ♥ lago

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  • dearjilly
    dearjilly Member Posts: 102
    edited April 2012

    Hi Iago,

    Thanks for your responce.

    It has been almost two years since your diagnosis and it seems you have handled this issue very well.  Thanks for your input and your encouraging words.  It has been almost 5 months since diagnosis for me and I'm finding it easier and easier to deal with this as time goes on.  I figure the radiologists needs to dot their i's and cross their t's, just in case.

    When I was pregnant with my daughter, they told me she could have either cystic fibrosis, downs syndrome or a number of other issues, by looking at the ultrasound.  That was over a year ago and she is just fine.  Perfectly healthy, so see......you just have to hold on to the yes, everything is quite alright!

    Jill :)

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited April 2012

    Well, here's the thing - nothing would change for you if it was mets.  

    I had liver mets, in fact I had a liver resection - my entire left lobe was removed.  A spot in my right lobe was also ablated.  Now, something shows on PET in the ablated area.  One doctor thinks it's inflammation from the ablation and another things it's regrowth of cancer.  So, I'm in no man's land.  The test will be repeated in mid-May so I am either NED or not.  I don't know.  But, I am being treated with Abraxane.

    So how you live with not knowing is day-by-day. 

    You probably are NOT metastatic as cancer doesn't just disappear on its own - if they disappeared AFTER chemo then they are likely cysts.  

    They also found a lesion on my lungs.  They believe that to be from an old pneumonia.  After several scans (months apart) nothing has changed, so we now assume that it was nothing and don't look at it anymore.  All sorts of lesions and spots and things show up inside us - we get as many things inside us as we do outside on our skin - zits and moles, lesions and cysts.  It's only those lucky (ha ha) who get to see it. Most of them turn out to be benign and I hope yours will too.

    Until then, you live as if you have nothing wrong, which is what I am doing.  I go to work every day and live like the surgery worked.  I have no choice! 

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  • dearjilly
    dearjilly Member Posts: 102
    edited April 2012

    Hi Barsco,

    Thanks for your reply.  I was happy that they did shrink.  It was good news. :)

    I am scheduled for another CT and MRI in two months.  Not too sure it that's the norm.

    Jill

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited April 2012

    Sounds normal to me.  About every three months to monitor.  These tests have a lot of radiation so they don't want to do them too frequently.

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  • Momof2inME
    Momof2inME Member Posts: 683
    edited April 2012

    Jill,

    We could be BC twins. I too am Stage IIIa, dx 11/30/11. I had a CT scan pre chemo which showed 2 suspicious spots on my liver, too small (3mm, 5mm) to biopsy. I will have another CT at the end of chemo in May. For the first month, unfortunately, I obsessed about it but then like Coolbreeze said just started getting through each day. Now I only think about it here and there. We cannot stop living. I tell myself (a lot sometimes) that I will cross that bridge when it presents itself but for right now I need to be in the present as much as I can. I am sorry that you are going through this. It can be really difficult some days.

    {HUGS}

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  • dearjilly
    dearjilly Member Posts: 102
    edited April 2012

    Thanks for your responce coolbreeze.  I was hoping you would respond!  I've read some of your blog and I admire you, as you have been there to help a lot of women on this website and her2 support website.  Thank you!  I do hope you are right and that they probably aren't mets, I may never really know if they are or not!?!?!  I was wondering if your right lobe has grown at all since your surgery?  I've heard that it does grow back, but not sure how much it would grow?  I will take your advice and put it to work.  Thanks again. xo

    Momof2inMe: let me guess.....you were either pregnant or breastfeeding when you were diagnosed!?  I was breastfeeding my baby (7 months old at the time) when I found the lump in my armpit.  Ironic thing was, I was in class for my nursing program and we were watching a video on how to do a proper breast and axilla assessment when I got the call from my surgeon to tell me the news.  umph!  Anyway, we ARE twins!!!  Weird really.  We are very similar eh?  oops, I said "eh" lol.....  anyway thanks for getting back to me and sharing your story with me.  Although, I wouldn't want anyone in the whole world to go through this, it makes me feel not so alone when there is someone out there, just like me.  I am sending you strength and hugs.

    p.s. are you doing neoadjuvant therapy? 

    Jill

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  • Momof2inME
    Momof2inME Member Posts: 683
    edited April 2012

    Jill,

    I was 3 months post nursing. I stopped nursing when my son turned 1 and I found my lump about 3 months later. I did however have mastitis 3 times in BC breast while nursing. I had a smalI but aggressive tumor and extensive DCIS. I think it had been there for a while. 

    I had a BMX in December. It ended up being the right decision for me as ADH was found in the other breast. Started chemo 19 days later this past January. I will finish May 23rd, then on to radiation. I hope to move on with life after all this. It's really hard some days with the kiddos but they also give me strength.

    PM me any time if you need to vent/talk.

    {{HUGS}}

    P.S. I live in Maine and hear "eh" quite a bit..Smile

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  • Msbelle
    Msbelle Member Posts: 235
    edited April 2012

    Had a CT scan of my chest yesterday. Onc called me today and said 3 small cyst less than 1 inch in size showed up on my liver. He thinks it is calcifications or benign dense areas but is scheduling another CT of just my liver. Now I am so stressed. Had to have the first CT to check into my heart issues. See a cardiologist next week too. What next?? My onc said a lot of cyst have been there since birth and just show up while checking other things.

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  • lago
    lago Member Posts: 17,186
    edited April 2012

    Msbelle once they see something they keep scanning. See my post above. Not sure when they stop.

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  • dearjilly
    dearjilly Member Posts: 102
    edited April 2012

    Msbelle,

    Your onc is right, cysts, fat, blood vessels, and hemangioma (benign mass) all just show up and some go away or stick around. 

    I know, all of this is very overwhelming. 

    Like Iago said, they keep scanning.  We may never know what they are, so I try not to dwell!?

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  • Msbelle
    Msbelle Member Posts: 235
    edited April 2012

    Thanks lago and dearjilly. I should find out when my next scan is today. Hopefully this week. Trying to stay positive. Hate this rollercoaster ride!

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  • Msbelle
    Msbelle Member Posts: 235
    edited May 2012

    Had my scan today...thank you GOD it is a hemangioma! I will start the never ending scans but thankful its not mets! Thanks everyone for support.

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  • lago
    lago Member Posts: 17,186
    edited May 2012

    Yay Msbelle. No mets for you!

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited May 2012

    Dearjilly,

    You can always PM with with questions; I don't mind.

    As for whether my right lobe has grown or not, I'm not sure.  It must have but they don't mention that in radiology reports.  I have scans at home that are post-surgery but I don't have pre-surgery so I can't compare. They say the liver does regeneratet though, and very quickly, just in a few weeks.  It doesn't go back to normal size or shape though.

    Congratulations msbelle.  I'm glad you have a hemangioma and I hope the same for you, Jilly.  :) 

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