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Old 01-02-2012, 12:00 PM   #1
SunCrystal
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Tumor both HER2+ and HER2-

Is there anyone else whose tumor was diagnosed as heterogenous with HER2+ and HER- sections? My biopsy sample was HER2+ but following my mastectomy surgery, the tumor itself was found to be HER2-. Both pathology labs conducted FISH. I had the FISH tests repeated at a 3rd independent pathology lab and they obtained the same results with HER2+ for the biopsy sample and HER- for the mastectomy tumor. I know this is pretty rare--but I am wondering what others' experiences have been and what treatment was recommended. My oncologist just started me on herceptin and taxol a week ago after 4 dose-dense AC treatments.
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Old 01-02-2012, 12:53 PM   #2
CoolBreeze
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Re: Tumor both HER2+ and HER2-

Honestly, I've never heard of that. I was going to say you should get your tumor retested but it seems you have.

I think the treatment is appropriate though. Treating as if you were fully HER2 won't hurt the parts that don't overexpress the protein but will help the parts that do.

You are one complicated lady! :-)
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08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 01-04-2012, 06:54 AM   #3
Sheila
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Re: Tumor both HER2+ and HER2-

Could it be possible that there was 2 tumors? Small, but indiviual? I say this because my sister was triple neg on one tumor and triple positive on the other in one breast...just a thought>
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Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 01-04-2012, 03:34 PM   #4
karen z
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Re: Tumor both HER2+ and HER2-

All responses to your posts been great and, boy, this is complicated. I think your oncologist is being appropriately aggressive given the situation (and it was very smart to be retested more than once if necessary). Yours is not an easy regimen (most of us have not had easy regimens but they do end) but it is highly effective for whatever part of anything is HER2 positive (which is critical to deal with). I had the same regimen as you but did not have dose dense AC, just "regular" AC. Best of luck and please ask this group if you have any more questions. You will find a lot of wise people here! I know I have!
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Old 01-04-2012, 06:17 PM   #5
SunCrystal
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Re: Tumor both HER2+ and HER2-

Thanks for the responses. It was just 1 tumor, not 2. And I am glad that the independent pathology lab was able to confirm the HER2 in their testing--and not writing it off as a false positive. I wouldn't want to be HER2+ and NOT have herceptin. It will all be good in the end, I'm sure.
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Old 01-04-2012, 06:27 PM   #6
NanaJoni
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Re: Tumor both HER2+ and HER2-

I also had 2 small tumors - one triple negative and one er-/pr-/HER2+++. So I did TCH and then Herceptin for almost a year. Really unusual to have path results like yours but I'm never surprised by anything these days.
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Joni -64 yrs old -
3/01/10: found lump in rt.breast
3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
5/21/10:port installed,TCH chemo (6 x 3 wks); Herc,-1yr; 33 rad tx after chemo
07/2010: port not working-2nd port didnt'work;3rd port opposite side.
07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
08/2010: hospitalizations w/3 of chemos; decision to stop after 4th-on to radiation in Oct 2010;Herc cont.
12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
2/2013 - 6 mos checkup-all clear. CA2729 down frm 13 to 11.
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Old 01-04-2012, 10:27 PM   #7
Rich66
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Re: Tumor both HER2+ and HER2-

Good example of the limits of limited biopsy sites. My mom's presurgery needle biopsy referred to heterogeneous mix regarding Her2. If you can have different results within one tumor, it is probably not so rare for multiple met sites to have different characteristics. Did you happen to have neoadjuvant/pre surgery chemo?
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