recurrence in chest wall

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janinvan
janinvan Member Posts: 83

re triple negative --has anyone had a recurrence on a masectomy site, on/in the pectoral muscle, and near the collar bone (12-13 years after first cancer) ? This fullness/swelling looked like lymphodema to the doctors!  ...like my right arm...  Do you people have a CA15-3 which correlates to your situation? (blood tumor marker)

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited August 2008

    Hi Janinvan,

    I'm never made it 12-13 years out.  But I have all those areas plus mets to the skin. And my tumor maker is only 50.  Do to the fact we do not have bone/organ involvement.  Are tumor markers do not truly reflect what is happening to us. TN markers only work with true mast. diseae. 

    This must suck big ones to go so long without a problem! Sorry you had to join us again.  Have you got a treatment plan?  I'm using Gemzar, Carbopatinum and Avastin. 

    Flalady

  • janinvan
    janinvan Member Posts: 83
    edited August 2008

    Florida lady....by the way...what are "views" ??   23  ??

                         7 TREATMENTS OF CHEMO DOCITAXOL(finished)

                        radiation --approx. 23

                       then.......??? we'll see

                       do they scan you with...?? CT/ PET/ MRI ?

  • jeanne46
    jeanne46 Member Posts: 1,941
    edited September 2008

    Jan,

    After over 13 years my cancer recurred in soft tissue underneath my implant (not near the collar bone) and in two ribs near the implant and in lymph nodes in the mediastinum.  I have been on this roller coaster since 12/05.  In 1992 my original dx was stage 1, node negative, ER/PR+.  In 2005, after a bone resection, I was dx as triple neg.  Two years later I had an enlarged axillary node removed and it turned out to be ER+ (PR-).

    My TMs seems to correlate pretty well to my scans (with regard to progression/regression). 

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited September 2008

    janinvan,

    Sorry...I'm not sure of your first question?? Are you asking about the 23 rads?  This is a very odd number.  Usually we get 30 to 35.  Is this your first round of rads?  I'm surprised they are only treating you with one chemo.  With recurrence most of us have multiples...In other words...hit it hard and fast.

    They use PET scan only on me now.  PET scans usually work very good with TN because of a higher level on cellular activity that the PET can pick up.

    Best wishes to you,

    Flalady

  • janinvan
    janinvan Member Posts: 83
    edited September 2008

    ...no -now I realize that "views" are the women who read this, etc.

    ...I don't think that 23 radiations is odd...it's because I had radiation years ago---so they can't do too many!

    ....I wish that there were pill medications for triple negative!!...      thanks!

  • SoapMaker
    SoapMaker Member Posts: 157
    edited September 2008

    janinvan, so sorry to hear about your recurrence. I have a little confusion. 12-13 years ago, they didn't test for receptors, so are they telling you that the cancer you had 12-13 years ago was TN? According to researchers, sorry can't remember the article but it is somewhere on this board, there has not been one case of recurrence of TN in any woman who had made it to 8 years, cancer free. Though there is no cure for cancer, they said that any woman who had made it to 8 years, cancer free, can consider herself cured. This just blows that article all to h--l. I wish you the very best, sweetie.

    ----------------------------------------------------------------------------------------------------------------------

    Where is the cureCry

    www.truefacesofbreastcancer.org

  • janinvan
    janinvan Member Posts: 83
    edited September 2008

    to Cin56:    NOW it's triple negative.....years ago it was estrogen receptor negative (and I think -progesterone negative)

    re research ....???   they need effective, clever surveillancediagnosis, etc. (observation and technological)

  • Shirlann
    Shirlann Member Posts: 3,302
    edited September 2008

    Oh yeah, that "non-diagnosis" is certainly possible.

    I was diagnosed TriNeg in 1998, they did not reccomend chemo.  Why?,  They didn't know much about TriNegs, and there was little if any research.  A lot of the info now available was NOT available 10 years ago, much less 14 years ago.

    Gentle hugs, Shirlann

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