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Am I Triple Negative or not?

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mlisse View Drop Down
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    Posted: Oct 29 2010 at 5:00pm
Hello.  My doctors said I was triple negative even though I was 2% positive for estrogen.  Now he has prescribed Tamoxifen and I'm wondering if I should take it or not.  Did anyone else have a very small percentage?  Is anyone else taking Tamoxifen?  Thanks.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 29 2010 at 5:24pm
Hello!  I've read some other posts where members had a small percentage positive and they were still considered TN.  I think because of the small percentage positive, they think you might benefit from tamoxifen.  My df was dx 2 1/2 yrs ago with tnbc.  I don't know if she had a small percentage positive, but her onc had her try tamoxifen too.  I'm not a medical professional, but have you considered a second opinion?  It might help comfort you in your treatment decision.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Autumn10182001 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 29 2010 at 10:40pm
I was 5% ER+ and my Dr says I am still triple negative... however, he put me on femara again, so it can help with that 5%...   I  haven't been able to get anyone to really tell me what the cut off is, someone said 30%...  but I don't really know... I think anything under 30% is TNBC...    The Femara is basically the same as Tamoxifen, Tamoxifen is for pre-menopausal...   I am post as I had my ovaries out back in 2003.
DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 30 2010 at 4:29pm
Hello mlisse and welcome to our community!
Stage 2 2003
Stage 1 2007
BRCA 1+
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dmwolf View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Oct 31 2010 at 10:25am
The cutoff varies from place to place.  The number I've heard is 10% to be considered ER+.   The good news is that even if you are below that cutoff, I think the biology of the cancer tends to be less aggressive if there are at least some ER+ cells.  Most of us TNs have pretty much none.  It might be worth going on an estrogen blocker, too, once regular treatment is over.
Good luck,
Love,
Denise
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ghostie Quote  Post ReplyReply Direct Link To This Post Posted: Nov 01 2010 at 2:09pm
My surgeon (not the oncologist) just told me that he thinks I should consider Tamoxifen. I was about 2% positive for estrogen, so clearly fell into the TN category. BUT---I've had an oophorectomy. So, if my ovaries are gone what possible good can an estrogen inhibitor accomplish? Isn't all my estrogen basically gone already? I wonder if my surgeon remembered that I have had the oophorectomy, since it was recent.
 
Anyone who can help me understand this?
Age 49, DX 8/27/09, 1.8cm, Stage I, Grade 3; lumpectomy 9/21/09, clear margins, 2 nodes removed, BRCA2+, Oncotype score 67. Finished 4 DD A/C + 4 DD Taxol on 3/18/10. Completed radiation in June 2010
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TracyAMac Quote  Post ReplyReply Direct Link To This Post Posted: Nov 01 2010 at 4:41pm
Hi Ghostie - I asked my onc. why i would need hormone therapy if I decide to have my ovaries+ once I get my BRCA results( I had a second tumour in the breast that was non-TN along with one TN tumour) He said that the hormone therapy is primarily focused on avoiding long term  BC recurrence and it is more effective than just having your ovaries out - the latter of course is focused on preventing ovarian cancer which is extremely difficlut to detect and treat.

Tracy in Toronto
TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells
Taxotere&Cytoxan x6
Bone cancer 1980 age17;surgery&chemo AC+Methotrexate
BRCA-ve
On hormone therapy & Metformin Trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Nov 01 2010 at 4:59pm
Ghostie, our bodies still make estrogen even without our ovaries.  Fat makes it, and I think other tissues do too.   I know from friends that there is a BIG difference in how people feel without ovaries and post-menopause vs. on an aromatase inhibitor.     (Which might be an argument against going on one, if you think the likely benefit is small).  I dunno....
d

DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ghostie Quote  Post ReplyReply Direct Link To This Post Posted: Nov 02 2010 at 12:41pm
Thanks, your responses have helped me understand a little better!
Age 49, DX 8/27/09, 1.8cm, Stage I, Grade 3; lumpectomy 9/21/09, clear margins, 2 nodes removed, BRCA2+, Oncotype score 67. Finished 4 DD A/C + 4 DD Taxol on 3/18/10. Completed radiation in June 2010
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mr Mom Quote  Post ReplyReply Direct Link To This Post Posted: Jan 08 2011 at 12:19am
Ghostie
 
Up here in canada the "cutoff" point they use for saying TNBC is10%---but have been tole that if there is any % then there is a chance it will respone to receptor therapy
 
at 2% yes it is low---but i would not rule it out for an additional treatment if i were you
 
Cancer is not something you want to sit back and say coulda shoulda woulda based on our ecperience---take it to the max of what is out there so you know you left no stone unturned it beating this thing--IMHO
 
For my wife we dug into the pathology as further cancer developed to find out that answer but unfortunately she was zero zero zero so no adidtional appplications possible
 
 
All the best to you and family
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rigatonismom Quote  Post ReplyReply Direct Link To This Post Posted: Jan 08 2011 at 7:15am
Hi Ghostie,
I asked basically the same question.  My path report said that the Progestrone was minimally reactive.  My onc said after the surgery and radiation are done, we might consider a hormone targeting drug.  I questioned was I TNBC or not.  I guess the answer is yes, I am TNBC and yes going on a harmone targeting therapy is a possibility.
Nita
DX 09/10 TNBC Stage3c, grade3, Tumor 2.7cm, chemo started 9/29/10, AC x4, Taxol x12, lumpectomy 4/11/11-tumor .6cm, 3+/22 nodes, radiation x 30 finished 6/30/11.Clinical Trial Cisplatin,PARP 8/23/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TracyAMac Quote  Post ReplyReply Direct Link To This Post Posted: Jan 08 2011 at 10:53am
Dear Milisee and Ghostie

Further to my Nov. 1 note, I started Tamox. to help prevent recurrence of my 2nd tumor which was hormone positive (except HER2). My onc. said if I was a bit older (currently 47) he wouldn't bother with hormone therapy for me since the risk of recurrence is much  lower and long term than my TN tumour and and menopause the risk lowers even further. Being technically "pre meno" I decided to go ahead with Tamox. A few side effects during the first weeks but very tolerable now. He will probably switch me in a couple of years to one of the one of the 3 hormone therapies available for post -meno women. The risk of leg blog clots or uterine cancer is higher for my given my prior cancer and surgery 30 years ago

Tracy in Toronto
TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells
Taxotere&Cytoxan x6
Bone cancer 1980 age17;surgery&chemo AC+Methotrexate
BRCA-ve
On hormone therapy & Metformin Trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rigatonismom Quote  Post ReplyReply Direct Link To This Post Posted: Jan 08 2011 at 11:18am
Interesting, I am definitely in the older group.
Nita
DX 09/10 TNBC Stage3c, grade3, Tumor 2.7cm, chemo started 9/29/10, AC x4, Taxol x12, lumpectomy 4/11/11-tumor .6cm, 3+/22 nodes, radiation x 30 finished 6/30/11.Clinical Trial Cisplatin,PARP 8/23/11
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