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outnumbered
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Joined: Feb 02 2009
Location: New Jersey
Status: Offline
Points: 525
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Posted: Mar 28 2009 at 8:20am |
Pam,
The BRCA 1+ is a facor for second primary, but I have had the bilateral already. That is why there is some concern over the nipple sparing procedure. He really does not think it is enough of a concern to have me go back and revise my reconstruction though. He is discussing this at conference also. I was already told by my surgeon that I will need to ultrasound my nipple/areolas once a year. I may need additional surgery because I am experiencing some encapsulation. I might consider revision at that time depending on what the conference tells me. UGHH Why didn't I do more research in the beginning???? I feel like everything has been screwed up and done a$$ backwards.
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~Sara
DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG
BMX (nipple-areola-sparing) 8/5/08
Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09
BSO 9/3/09
NED since 08/05/2008
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trip2
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Joined: Jun 03 2007
Location: Under Palm Tree
Status: Offline
Points: 8549
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Posted: Mar 28 2009 at 8:28am |
Ok I am sorry, not looking at all the details and forgot the mastectomy.
I see more of what he is saying now. One of the things I have tried
to understand is if the brca 1+ provides additional risk after you are diagnosed and I thought it did but this info is hard to find.
With mastectomy we cut that risk way down whatever it might be.
With vigilence you should be fine Sara. I can undersand your concerns though because this darn tnbc can be very sneaky.
Edited by trip2 - Mar 28 2009 at 8:30am
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Stage 2 2003
Stage 1 2007
BRCA 1+
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outnumbered
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Joined: Feb 02 2009
Location: New Jersey
Status: Offline
Points: 525
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Posted: Mar 28 2009 at 8:39am |
Its very confusing. I think my issue is I am at a higher risk for recurrance because I have not had chemo. Although since the tumor was tiny, maybe not so much? I am at a slightly higher risk of a new primary compared to someone who had a traditional mastectomy because of the NS.
I think this may sum it up.
Never a need to say you are sorry.  Its never simple, thats for sure...
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~Sara
DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG
BMX (nipple-areola-sparing) 8/5/08
Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09
BSO 9/3/09
NED since 08/05/2008
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trip2
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Joined: Jun 03 2007
Location: Under Palm Tree
Status: Offline
Points: 8549
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Posted: Mar 28 2009 at 9:52am |
Sara,
I came across an article today about BRCA 1/2 carriers and they don't
seem to know the risk once we have had breast cancer, whether it ups our risk who knows. So that would be in line with what Dr. Winer said.
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Stage 2 2003
Stage 1 2007
BRCA 1+
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outnumbered
Senior Member
Joined: Feb 02 2009
Location: New Jersey
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Points: 525
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Posted: Mar 31 2009 at 10:48am |
Ok its official, NO CHEMO. I know I shoudl be happy, but I feel like a sitting duck. I have done all I can do, so now I wait. I made it very clear that I was not happy, that my gut says different, I even told them I hope I do not have the opportunity to say I told you so.
Anyway, perhaps I will post more on the recurrance anxiety thread.
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~Sara
DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG
BMX (nipple-areola-sparing) 8/5/08
Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09
BSO 9/3/09
NED since 08/05/2008
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trip2
Senior Member
Joined: Jun 03 2007
Location: Under Palm Tree
Status: Offline
Points: 8549
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Posted: Mar 31 2009 at 11:00am |
Hi Sara,
So you got your answer today. Well I can understand your concern and certainly hope you don't have the opportunity either to say I told you so.
Yes stay with us we enjoy your company. 
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Stage 2 2003
Stage 1 2007
BRCA 1+
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josie33
Groupie
Joined: Jan 30 2009
Location: New Jersey
Status: Offline
Points: 81
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Posted: Mar 31 2009 at 11:22am |
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Sara, everyone here can understand your anxiety and unhappiness, but you really have gone the extra mile to make sure you get the best opinion and treatment plan by consulting so many docs (including one experienced in TNBC)--so, at the end of the day, if there is unananimity among them, I hope you can come to a place where you can feel comfortable relying upon their expertise. Just as we always want to make sure the world knows that not all breast cancers are created equally, I assume that not all TNBC is created equally--and there may be features of your particular cancer and pathology that, in addition to your small tumor size, convince them that chemo is not needed in your individual case. Anyway, I hope you can be at peace with the decision and try to view it as a positive thing rather than a negative (easy for me to say, I know.)
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Sister DX'ed 11/08
Lumpectomy & SN biopsy 12/08
1.6 cm tumor, poorly differentiated, lymphovascular invasion, node neg (0/2)
Stage 1
DD A/C x 4, Taxol x 4, to be followed by rads
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