talk me off a ledge- liver mets symptoms?

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Juliechicago
Juliechicago Member Posts: 200
edited June 2014 in Not Diagnosed With a Recurrence or Metastases but Concerned

Please talk me off the ledge?

For past 3 months, have been having abdominal pain that runs around the upper right quadrant, mostly under right rib cage.  Not severe- more gnawing or burning. No fever, nausea, bloating. Doesn't keep me up at night.  I have a history of IBS, but that mostly manifests with anxiety & diarrhea.  This seems a different kind of pain.  I have mild GERD which I usually experience as heartburn,lump in throat.   As I admit to higher level of anxiety, I waited beyond 2 weeks.  Went to new gastro doc. She recommended colonoscopy to rule out anything colon related- all was fine.  Then thought maybe gallbladder. Ab Ultrasound-all was well. In particular, Liver was noted as "Normal."  New symptom- burning pain that runs up and down upper back, behind right shoulder blade.  Thought maybe GB issue without stones.  HIDA scan normal.  

I'm scared to death that this may be liver mets. Onc did bloodwork, liver enzymes all normal.  CS a year ago saw nothing on liver.   I'm going back to Gastro doc tomorrow- wondering now if there might be a ulcer (duodenal- seems to be right place. Pain doesn't seem to caused by eating- sometimes it's better if I do eat something soft- yogurt etc.  But seems to be bothered by anything acidic- oj, some coffee) 

Trying also to reach onc...

But meanwhile, I have myself in a state. Keep thinking that if anything were large enough to cause pain- esp. that would radiate to back-that it would have been detectable on the ultrasound? I understand it's fairly decent for detecting spots on the liver, though not necessarily great detail. US found nothing though?  Never thought i would  wish for an ulcer....

(I'm a 3 timer- but all primaries. First Stage 2, 3.3cm, 0 nodes, triple neg in 2000. Lump/rad/chemo. New primary in same breast 2008, Stage 1, 1cm, no nodes, R mast, chemo. DCIS left breast, 2011, Left Mast. )

 thanks......julie 

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  • Babs37
    Babs37 Member Posts: 455
    edited February 2012
    I'm having the same symptoms you are having! I talked to my onc about it and he sent me for a abdominal scan. It came back clear, no mets, but they saw something that looks like "fatty liver" spots. I am now going for an abdominal US on march 7th to see what is up with that. I am scared too. I'm beggining to question everything I eat now! I am not overweight and eat good food. I read that chemo can do this to the liver in some people. You are "praying" for an ulcer, I'm "praying" for a fatty liver! Tongue out When I get my US results, I'll let you know what they found. Good luck.   
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  • wildrumara
    wildrumara Member Posts: 450
    edited February 2012

    If your LFTs are normal, then I would think your liver is fine??  You don't think this is musculoskeletal related?  

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  • changes
    changes Member Posts: 622
    edited February 2012

    I had really similar symptoms. Had an abdominal ultrasound and chest/abdominal CT scan. Nothing found wrong. The doctors kind of shook their heads and guessed it was something musculoskeletal - probably chostochondriasis from the radiation.

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  • lrr4993
    lrr4993 Member Posts: 937
    edited February 2012

    I have gall stones and what you are describing sounds like my gall stone attacks. Does it happen after a high fat meal? That is what triggers my attacks.

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

    I have no symptoms from my liver mets at all.  The liver is a very forgiving organ and it takes a long time before you end  up with symptoms - and from what I understand, it's more bloating than pain.

    I'd look elsewhere.  

    My liver didn't even hurt when they took half of it out! 

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited February 2012

    I'm having symptoms too, including the bloating and nausea!!! I have heard on the boards somewhere that blood work may not necessarily show elevated numbers when mets is present. I get bad enough that I kind of slouch on the couch so I can "massage" that upper right area to stop the pain spasms. I'm on Oxy's for other pain and wonder how bad I'd be if I wasn't taking any pain meds.

    I was at the ER at the end of January for what I thought was flu, but the doc actually was worried about liver mets so I had x-ray, ultrasound and then CT scan. Liver seemed okay, but they did find 3 "lumps" bopping around on the left side of my abdomen. Finally going to the doc on Wednesday to have him pursue what these lumps are....sigh.

    Good luck to us all!!!

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  • Juliechicago
    Juliechicago Member Posts: 200
    edited February 2012

    Update-- (I hate it when I don't find out what happens to everyone, so will finish this one out if I can..)

    Saw gastro doc this am.  She does not think it's gallbladder, based on normal US and HIDA scan.  Does not think it's liver based on US and bloodwork.   I mentioned possibility of ulcer.  She noted I had endoscopy a year ago that was fairly normal and said, well, unless you've taken a lot of NSAIDs and antibiotics since then.  Um- actually-- I have. (long story).  Oh. Well this changes this. Possibility.  So will be scheduling endoscopy.   If nothing there, may go to CS. Just hate to take on more radiation if not necessary.  But God, I could use some peace of mind.  What this stupid mind of mine does to me.

    Thank you to everyone who responded-- let us know how all works out for you!

    julie

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited February 2012

    Julie, so far so good....I know what you mean about at least wanting to know for sure what it is! Inconclusive results are just so frustrating!!

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  • nancyh
    nancyh Member Posts: 2,644
    edited March 2012

    Hey Julie,

    Quick question for you, how persistent is your pain?  Is it almost always there?  Any unexplained pain lasting as long as yours should be checked out, probably with CT or PET/CT.  I hesitate to even write this because I don't want to worry you even more (there are certainly plenty of non-sinister reasons to have right upper quad pain), but I am an example of someone who did have low-level pain that lasted for months and it ended up being liver mets.  In my case, the pain started in the top part of my right shoulder, between my neck and shoulder.  I figured it was some ergonomic issue from my mouse/keyboard.  Eventually the pain showed up in my right upper quadrant as a dull ache, never severe pain, but fairly unrelenting. My labs were all normal, so you can't really rely on that.  I understand not wanting the radiation exposure, but I think a scan would be really helpful.

    Hoping it is nothing and, again my apologies if I'm increasing your anxiety (not my intent!).  Wishing you the best, do keep us posted.

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited March 2012
    Nancy, it is posts like yours that are needed!! We already think the worst, but don't want to seem like hypochondriacs. The fact that bloodwork comes out okay seems to deter docs from pursuing much more, but I've quoted info like yours to push for more testing. Thank you for validating our fears. Seriously. We post out of fear already, so no answer can add to it.
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  • patsfan
    patsfan Member Posts: 72
    edited March 2012

    Nancy,  Thanks for posting.  I am having the same symptoms right now and have myself all worried.  I started with the sholder/neck pain last yr and the onc told me is was probably stress and to get a massage.  The pain had mostly gone away until probably about January.  Now it is constant again.  I also have the dull pain feeling on the same side, just under my ribs, as well as a new  pain in my lower abdomen on both sides.  Just had my 3 yr checkup with my onc, and have mammo and US scheduled for next week.  She is also going to do a US of my ovaries to rule out anything there.  My bloodwork was fine except my potassium was low.  She told me to eat a banana.  I get the feeling she thinks I'm a hypochondriac!  How do you convince the DR. to do further testing?

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  • sandilee
    sandilee Member Posts: 1,843
    edited March 2012

    patsfan,

     I was like you a year ago.  Not pain in my shoulder, but my back.  It would come and go.  I mentioned it but didn't make too big a deal of it. Bloodwork was fine, so no follow-up scans were offered.  Six months later  I had a collapsed vertebra in my spine, causing cord compression, due to cancer in my spine. I should have insisted on further testing when I started to worry. We do tend to know what is normal for our bodies better than the doctors.

     Honestly, I don't think a mammo or breast ultrasound, or examining your ovaries is going to help you if you have liver or bone mets. Most likely, your pain is nothing serious--but, what if it is? Even if it's only a 10% chance that your cancer has progressed, you have the right to know either way for peace of mind.

     I would insist on either a combo CT and bone scan, or a PET scan.  Have you had any of these tests since your original diagnosis and treatment?  If not, you're overdue, imo.  You need to see if cancer has returned. If not, you can celebrate and not think about it for another couple of years.

    Knowing what I know now, I would have made a much bigger deal about the small amount of pain I was having.  Instead of "off and on" I should have said it was constant.  Instead of a pain level of 3 or 4 when it happened, I'd tell them it's a 7 or 8. That will get their attention.  It's about the only thing that will.  

      Please don't think that in reading your symptoms, I think your cancer has recurred.  I don't.  I just think you have a right to tests that will give you the information you need.

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  • patsfan
    patsfan Member Posts: 72
    edited March 2012

    Sandilee- Thanks for your feedback.  No, I have not had any kind of scans since original diagnosis.  I have the routine mammo and ultrasound, but no scans.  I have a pretty high threshold for pain and don't go to the doctor until I know something is wrong.  I think your right, I need to be more insistent.  Originally I thought it was my right ovary.  Now I am thinking it is higher and the lower pain is a result of something else.  Now that you mention it I think I am do for a bone scan to check my osteopenia level.  I am assuming that would show bone mets in that kind of scan, am I correct, or are they just looking for bone density?  I just can't shake this feeling that something is not right. 

    ~Gayle

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  • Babs37
    Babs37 Member Posts: 455
    edited March 2012

    Hi Julie, I thought I would let you know I had my abdominal US wednesday and all was clear. No mets but still have my gallstones so maybe they're the culprit.

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited March 2012

    Babs!! Such GOOD news!!!! Congrats!!

    Gayle, bone DENSITY and bone SCAN are two different tests. You want a bone scan.

    Sandilee, thank you for your posts. It's the kind of thing we need to hear to validate our fear and keep us vigilent. It's too easy to brush things away and ignore them. A dear sister of mine on bco here, went 7 months in excruitating shoulder pain, moved half across the country and then found out in the ER that she has bone and liver mets!!! Why don't doctors take us seriously????

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  • patsfan
    patsfan Member Posts: 72
    edited March 2012

    Well said Barbe.  Thanks for the info.  I agree 100% about brushing things off.  I haven't been on here for awhile.  I guess I needed the reminder to be vigilant!

    ~Gayle

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  • Juliechicago
    Juliechicago Member Posts: 200
    edited March 2012

    Hi- my update.  Endoscopy saw no ulcer. Just gastritis. So will be moving on to catscan- have spoken to onc.   Scared.  Keep hoping that clear ultrasound was a good sign-- hoping that anything large enough to cause symptoms would have shown up.   Trying to get in as soon as possible.

    -julie

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited March 2012

    Thanks for the update Julie, you've been in my thoughts!!!

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  • Juliechicago
    Juliechicago Member Posts: 200
    edited March 2012

    And another update-- hopefully, final!  I was able to get catscan in today.   A bit of a harrowing experience.  Was situated on table-- and then everyone disappeared for almost 20 minutes. I'm laying there thinking-- um....ok-- lunch break?   Finally tech came back and explained there was some conflicting notes on the order that had to be confirmed with radiologist.

    Oncologist called me later in the afternoon.  Cyst on liver.  Compared to earlier catscans. Same place, has not grown, fluid filled.  No mets, he assures me.   And. Kidney stones.  Which seems odd to me as back pain is higher up- mid back to behind scapula. Not sure they are related. (note-- I had bone scan and MRI of back earlier in the year for other reasons, so am reasonably certain there are no bone mets at play).  I'm not sure what to do about kidney stones- but probably will have to go back to primary physician as onc really does not deal with anything non cancer related.    But for tonight- I'm just going to try to exhale and get some sleep.   Thanks to everyone for the support.... julie

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

    Hopefully the kidney stones will pass on their own. Your PCP should let you know what to do for that.

    Welcome to the cyst on liver club! I have several that do not grow either.

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited March 2012

    GREAT news so far Julie!!!! You must feel a great weight lifted off your chest. My kidneys are "unusually high up my back" so kidney pain can be in a different place than the text book says.

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  • LuAnnH
    LuAnnH Member Posts: 8,847
    edited March 2012

    If your onc is resistent to listen to your concerns, you can always see another onc for a 2nd opinion.  Sometimes it is reassuring hearing similar answers from 2 different doctors that are not associated with each other.

    Something else I always tell people.  There is always an ER.  There job is to determine what your problem is and they will run tests, mri, cts, xrays or whatever it takes to be able to send you out the door with instructions on what kind of doctor to see to help you.  Sometimes you may need to exaggerate a bit but it you are truly concerned and you onc will not take your concerns as seriously as you think they should there are other options to give you piece of mind.

    I hope everyones scans come out ok with no mets!

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