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Just found out triple neg - help pls.
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sharon C Herber View Drop Down
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Joined: Feb 28 2009
Location: Ann Arbor MI
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Points: 9 		Post Options Post Options   Thanks (0) Thanks(0)   Quote sharon C Herber Quote  Post ReplyReply Direct Link To This Post Posted: Apr 05 2009 at 6:08am
Hi Pam--I'm replying to your March 20 post. I apologize for the delay. I travel a lot and use different computers. It's just today that I figured out that the topics that show up as active and then disappear when I go on from googling TN are all on the introductory thread. Anyhow, the UM hospital where I had my biopsy has a tumor board that looks at every case. This board has surgeons, oncs, and rad oncs. The onc and the surgeon assigned to your case then both talk to you separately. They were the ones who initially recommended neo adjuvant. I also got an opinion from an onc who my PCP recommended, and she was the one who introduced what was dense dosage for the time. I went with her and I am glad I did.

I have a good friend in Minneapolis who got double neg just a year and a half after me. She was being routed straight through surgery until I and another friend intervened. She switched surgeons, went to an onc and got a team together. In the end she had surgery followed by chemo and herceptin and is doing well 2+ years out.

Sharon


dx 03/05 multi focal with lymph involvement, stage II/III 4 dense dose A/C, 4 taxol, bil mast 8/05, 38 rads, NED
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trip2 View Drop Down
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Joined: Jun 03 2007
Location: Under Palm Tree
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Points: 8549 		Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 05 2009 at 6:41am
Hi Sharon,
 
I'm so glad you were able to help your friend.  The way a patient is treated must depend on where she lives, where she is going, what facility if any does she have available.
It could be so easy to be led down a path by a surgeon, it certainly is around here since we have no large facilites.  It's a shame too because for one thing I think their behind the times with some of their thinking  .
Stage 2 2003
Stage 1 2007
BRCA 1+
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Vicky View Drop Down
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Points: 14 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Vicky Quote  Post ReplyReply Direct Link To This Post Posted: Apr 05 2009 at 11:54am
Hi Cathy,

I just had to get in touch after reading your response to Linda. Your case sounds familiar to mine and I haven't spoken to anyone with actual knowledge of all this just yet. I have six tumors that add up to just over 7cm. Do you mind if I ask you if you had chemo first (before surgery)? If so, what drugs did they give you? I am on Taxol and I don't feel it is shrinking my tumors. Now, I've only had two rounds of it (in the last two weeks) and I was nursing my newborn less than a month ago so maybe my perception is skewed. My breasts are shrinking because I am no longer nursing so maybe the tumors seem bigger? Regardless, I'm going to ask for an ultrasound this week.

Sorry for bombarding you with all these personal questions. I'm just afraid that the therapy won't work for me even though I have not reason to believe it won't. I think I'm just having a low moment and I need to believe that I can rid myself of this.

Thank you for letting us know that you are free of the disease. That really gives me great hope and encouragement to be the same as soon as humanly possible.

Best wishes,
Vicky
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Nancy View Drop Down
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Location: Altoona, PA
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Points: 3814 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Apr 05 2009 at 12:14pm
Hi Vicy,
 
I just wanted to welcome you, and let you know that we have many resources here on the site, which may help while you are having treatments. It is my daughter Lori who was dx with TNBC in June 2007, and I just try to help out a bit here on the site.
 
It is my assumption that they do monitor the tumor during neoadjuvant chemo, or at least that is what many women have reported.
 
I will send you a private message with my email address so that I can give you directions for retrieving the info.
 
Again, welcome.
Hugs,
Nancy
 
 
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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trip2 View Drop Down
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Points: 8549 		Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 05 2009 at 2:00pm
Vicky,
I can understand your concern so would definitely suggest sharing this concern with your Oncologist.
Let us know what you find out.
Stage 2 2003
Stage 1 2007
BRCA 1+
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cweed View Drop Down
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Joined: Feb 01 2008
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Points: 10 		Post Options Post Options   Thanks (0) Thanks(0)   Quote cweed Quote  Post ReplyReply Direct Link To This Post Posted: Apr 05 2009 at 2:57pm
Hi Vicky,
 
I had surgery before chemo, but that's because I moved so quickly that I had the surgery scheduled before I saw an oncologist.   I ended up having to have radiation because the margins were close.  So, while I had surgery first, if we had to do it over again we would likely have done chemo first to try and shrink the tumors and get clean margins.
 
I have a friend who was also triple-negative and received chemo first. She had the same drugs as me ... but administered slightly differently.  I had Adriamyacin and Cytoxan every two weeks for four cycles; then Taxol every two weeks.  She had AC every three weeks, followed by Taxol weekly.  Both of us blessed to be disease free three years (me) and 2.5 years (her) later.  My friend was also nursing when she was diagnosed and her tumor was more than 5 cm. 
 
If your doctor doesn't have you scheduled for any additional chemo drugs, you might want to ask about it.  Or, get a second opinion.  I look at it this way ... if will give you tremendous piece of mind. 
 
Take this all one step at a time, and keep researching and reaching.  You will not only learn, but if you're like me you will find comfort in knowing that you are not alone in this. 
 
Feel free to ask questions anytime. 
 
Cathy
 
 


Edited by cweed - Apr 05 2009 at 2:58pm
Cathy, Winter Park FL
Dx 12/05
3 tumors, triple negative, 6+CM, 0/13 nodes, stage 2b
Double mast
AC+T, dose dense
radiation
NED!!
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