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Am I (likely)Triple Negative?

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thordis View Drop Down
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    Posted: Mar 22 2010 at 9:18pm
My doctor described my cancer as "not hormone sensitive" but I haven't yet seen the report that describes each of the three aspects of triple negative.  I'm sure that it's not estrogen and progesterone receptive, not sure about the HER 2. 

I know that one tumor rated a 9 on the Nottingham scale, so it seems like it might be quite aggressive; the other was a 7. 

I will see the doctor for a post-mastectomy visit on Friday, and I want to be prepared to ask the right questions if I am, in fact, Triple Negative

Thanks for any information!
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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: Mar 22 2010 at 10:07pm
Hi, Thordis.  So sorry you have reason to be here, but welcome to our community.  If the cells don't stain for estrogen or progesterone receptors (ER or PR), and are also not HER2 amplified, then the cancer is called triple negative.   Most TNs are high grade.   Keep us posted, and if you like, let us know about your choices as they come up.   You'll want multiple opinions from medical oncologists to decide on treatment. 
Best,
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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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Mar 22 2010 at 10:41pm
Dear Thordis,

welcome to TNBCF....I believe this is a wonderful resource...

Just a thought, I don't know where you are getting your medical advice but I hope you can get a second opinion on your pathology at Duke or UNC....It is very important that, if it has not been done already, that your HER2/neu status is determined by FISH tecnology. I think both Duke and UNC utilize this technique..

There is a Dr. Lisa Carey at UNC who is one of the country's leading experts on TNBC.

In general, I hope you( and when I say that I mean everyone) get a second opinion on your treatment plan. If you are already at Duke I would see Dr. Carey and vice-versa. 

There is a envelope icon above and a O New Messages...you can click on that if you wish and send me a PM. If you like I will send you my email and if you would like to talk I will send you my phone number.

again, welcome and good luck to you,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 22 2010 at 11:13pm
Thordis,

Hello and welcome.  Have you requested a copy of your path report?  If not, ask for copies of all reports, lab work etc.  Get a file box and keep all your records in one place.

There is a member, Holliberi, that is from NC and sees Dr. Lisa Carey.  Why don't you try sending Holli a pm.

Here's a pamphlet/brochure discussing TNBC:

http://www.lbbc.org/data/media/LBBCunderstandtriplenegative.pdf

Keep us posted,

Donna


Edited by 123Donna - Mar 22 2010 at 11:18pm
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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Lillie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2010 at 1:43pm
Hello Thordis,

Welcome to the TNBC site. I am from NC also. I live about 50 miles east of Raleigh, near Wilson. Don't know if that rings a bell or not.

So sorry you need to be here but believe me you will find it very helpful. You can vent, cry, rejoice, pray or most anything that helps you.

I had my surgery and treatments locally and felt good about it, but Duke and UNC are right at our doorsteps and I am thankful for that.

Love in Christ,

Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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thordis View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote thordis Quote  Post ReplyReply Direct Link To This Post Posted: Jul 06 2010 at 7:49pm
I'm looking at this several months after posting.  How different things look now!  Chemo is over and I'm in that relatively pleasant "third week" after treatment. 

My sister was diagnosed with breast cancer at the same time I was, so, in a sense, I won't feel like treatment is over until she's finished with hers.  (Yes, the BRCA- is correct--for two women in their 40s)

That said, all that remains for me is reconstructive surgery.  My question to all of you is this:  How do you deal with the uneasy feeling that this cancer is going to return?  My doctor said that it has a 23% chance of returning within 10 years, but I can't help but think I won't be in that 77%.


Edited by thordis - Jul 06 2010 at 7:53pm
2/10 Dx IDC TN
Stage 1 Grade 3
1.5 cm
0/4 Nodes
BRCA -
3/10 Mastectomy
4/10 Start C&T

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Serenitity Quote  Post ReplyReply Direct Link To This Post Posted: Jul 06 2010 at 11:06pm
Hi THordis
 
Happy you're done and so very sad that your sis also haas to undergo the treatments.  Sending you happy vibes and prayers for a healthy recovery for you and family.
Karen
aka Happy Go Lucky
member since April 22, 2009
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Carol (Tenn) View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Jul 06 2010 at 11:41pm
Thordis,
There is no pat answer for all who are dealing with the anxiety over recurrence. It's just part of journey and everyone is different.
I personally think that we should try to fill our lives with as much happiness and contentment that we can muster. Take each day one at a time and live it!! Just live it!! Don't sit around and worry about something of which you have no control. Keep up with your check-ups and keep a close eye on yourself for any changes and then Just Live!!
 
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
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