ILC mets worry!!

lozzie10
lozzie10 Member Posts: 2
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I was diagnosed with ILC in May 2012.After having a rightside mastectomy,chemo and rads i am now on tamoxifen.Apart from some quite painful truncal lymphedema i have been feeling great but i have just had an elevated cea blood result and its frightened the hell out of me.It wasnt raised by much.The normal range at my lab is 0-5 and mine was 5.7.My doctor wasnt overly concerned and said he would have been more worried if it had been in the 20's or 30's but i am still terrified this means a recurrence.I had more bloodwork done a few days ago and i get the reults today along with having a liver ulrasound and a mammogram.I think they are thinking liver as i have had some intermittent pain in that area.If anyone has any thoughts on this result i would be very grateful

· Share on FacebookShare on Twitter

Comments

  • toomuch
    toomuch Member Posts: 901
    edited December 2013


    Lozzie - I don't have any experience with this other then to say my MO doesn't check any tumor marker levels in early stage BC patients because of the high number of false positive tests and the subsequent additional stress and testing that can result. So...I hope that this is just a false positive result and that your liver ultrasound and mammo come out just fine. (((hugs)))

    · Share on FacebookShare on Twitter
  • Racy
    Racy Member Posts: 2,651
    edited December 2013

    Do you trust your oncologist? If so, accept the advice and your scan today will give another picture.

    If you don't feel confident in your onc's expertise, seek a second opinion.

    Best wishes.

    · Share on FacebookShare on Twitter
  • wallycat
    wallycat Member Posts: 3,227
    edited December 2013


    I am so sorry you are having anxiety. I wish I could tell you it ends, but for me, I still occasionally find myself in "the bad place."


    My onco (I have had 3 different oncologists) does not run tumor markers on me for the very reason that there are many false positives but also, false negatives.


    I was just accepted to an early ovarian cancer detection study and up front, they told me that some people do not "test" well on labs. One lady had her CA-125 go from normal to high and when rechecked, back to normal...this went on over the course of a year or more and finally, they suggested she was not a candidate for the study. Too many false positives.


    Your signature line does not include your stats, but most ILC is slower growing. If you are only a year out, the odds are against a recurrence. There are many things that can elevate markers.


    Good luck.


    Take some Lemon Balm....that's what I am taking to calm me....I am having ovarian worries and waiting for news.

    · Share on FacebookShare on Twitter

Categories