anyone with IDC and HR & PR negative and Her2Neu Positive

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sophie786
sophie786 Member Posts: 83
edited June 2014 in IDC (Invasive Ductal Carcinoma)

anyone else here with HR & PR negative and Her2+ postiive?  I'm 40 and was dx on jan.30.  I am getting chemo before surgery.  I have 2 lesions/tumors that were about 4-5 cm and 2 cm around nipple area. I just got my third cycle of chemo yesterday. 

anyone suggestions for this tumor type?

i will probably get masectomy.  I'm not sure if it will be modified radical mascetomy and if it will be bilateral.  I want to do whatever will improve outcome and decrease the chances of recurrences.

your input will be apprecaited.

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  • doxie
    doxie Member Posts: 1,455
    edited March 2013

    Sophie789,  Glad you found the HER 2 + forum.  Saw that you had posted there.  I'm sure those gals can help you.  

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  • sophie786
    sophie786 Member Posts: 83
    edited March 2013

    anybody with similar?

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited March 2013

    Sophie:  Biopsy 3/20 confirmed IDC.  Saw the biopsy addendum report tonight - ER/PR Neg.  HER2 = 2+ and they're now doing HER2FISH.  MIB1 Rate a high 75%. 

    I've been on the boards for two years since my double MX in Feb 2011 for DCIS w/large tumors.  No further treatment necessary.  Well... so much for that plan.

    Meeting with the MO tomorrow.  Grade is 3/3.  More tests I'm sure before I get new staging.  Not sure where I'll need to be reading now, but any links greatfully accepted.  Everything I've found about MIB1 appears to be tripple positive, and that's not my case, so...

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  • sophie786
    sophie786 Member Posts: 83
    edited March 2013

    were your tumors beign?  in situ is a very small and contained area

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited March 2013

    Sophie:  Original DCIS tumors were up to 9 cm, so not small.  Several in both breasts.  BMX Feb 2011 and we got clear margins. SNB also clear.

    Now just 2 years later I have a regional recurrance to the chest wall - and this time it's IDC & possible mets.  "No residual breast tissue seen", so maybe a new primary.  There are several tumors and one is over 3".  They plan to start w/chemo to try to shrink, then maybe rads, then surgery.  PET scan & MRI next week to rule out other sites or mets.  I'm not a happy camper, since I already gave what I thought was my share.

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  • netty46
    netty46 Member Posts: 296
    edited April 2013
    Were you er pr negative 2 yrs back?
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  • MNSusan
    MNSusan Member Posts: 305
    edited April 2013

    Minus Two, may I ask how they found your new tumors?  I'm wondering about follow up after BMX. 

    Sorry to hijack your thread, sophie.  This time around, my DCIS was ER-, PR- but they don't test for Her2.  My IDC is ER+ PR+ Her2-.  I had bilateral mastectomy in November, currently have tissue expanders and hope to have my exchange surgery in early-mid May.  No other treatment is being recommended.  I had a rough time with Tamoxifen the first time around, ended up with hives all over my body, and it doesn't appear to have worked anyway.  An AI is not indicated this time as my DCIS was ER-.  

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  • Ukkate
    Ukkate Member Posts: 292
    edited April 2013

    Hey. I was diagnosed on march 7. Found out I have two tumors in left breast (IDC) and an area of IDIS in same breast. HER+ I'm 42 and having mastectomy next Wednesday. We are in a similar boat. After mastectomy will begin chemo.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited April 2013

    Netty:  Two years ago I was marginal ER+/- and PR neg.  No treatment recommended since all nodes & margins were clear with DCIS.  Now it looks like a new primary w/a different signature - definitely IDC.

    MNSusan:  I had an appointment for my 2 year check up & expected to be NED. Had some pain in the chest wall and a bump like a baseball hit me.  The onc thought might be implant migration.  Not likely since I have the Allergan 410 gummies.  I requested an ULS before another MRI, since I'd had MRI 6 months ago.  The radiologist immediately ordered biopsy - and here we are. 

    Had the PET/CT and MRI today to restage BC.  "Abnormal uptake is present w/in multiple right axillary lymph nodes consistent with metastatic disease."   SH&T  Don't meet w/MO until the 10th but I'm going ahead & schedule port installation w/the BS.  Luckily MO is at Baylor so all my tests go to My Chart & I can plan ahead.  I'm 69 and I live alone so need to start lining up rides & see if my son can make it to town for the worst parts.  Any way I can research this site for my new diagnosis.  And be scared longer!!

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  • netty46
    netty46 Member Posts: 296
    edited April 2013

    Minus due to the size of that tumor 2 yrs back and having it be Her2 positive your oncologist should have recommend chemo. Well on with the fight now! Put the gloves on.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited April 2013

    kayb - thanks for your comments.  I was ER/PR negative with the DCIS - & you're right - they don't test HER for DCIS.  So double mast but no other treatment recommended.   Believe me, I've done a lot of research & I think the treatment 2 years ago was spot on.  Margins were clear, and serial node biopsies were clear - two on each side.

    Oh well - we put one foot forward and tomorrow's a new day.

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