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Local recurrence after Stage 2a TNBC

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Nbarbieri View Drop Down
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    Posted: Nov 29 2016 at 5:12pm
Hi everyone,
I'm joining this forum looking for some words of encouragement and hope! I have two young girls (ages 6 and 9), and I'm terrified of leaving them (and my husband of course) without their mom. Would love to hear from anyone who had this same experience and is doing well!!
 
Backstory:
I was diagnosed with Stage 2a 2cm tumor in my left breast in September 2015, and they discovered that one of my two sentinel nodes was positive for cancer. They only removed the 2 nodes during my double mastectomy/reconstruction, and said that they didn't believe it had traveled to any other nodes. I'm now deeply regretting the decision not to insist they go in and remove all of them. After my mastectomy, I went through AC then Taxol/Carbo...then radiation. I tried to hit it with everything available to me, and thought I would be done. Somehow all that treatment failed to kill the cancer that was in my lymph nodes the whole time Cry
 
I was just diagnosed with a local recurrence in my lymph nodes (on the same side as original cancer), and had them all removed last week. 7 of the 11 were positive for cancer this time around. I just finished radiation in June, so it came back really fast.
 
I am with the INOVA Char Cancer Center in Northern VA. My oncologist, Dr. Mary Wilkinson, sent the tumor off for Foundation testing to see if there is anything to target with a different drug. Once we get those results back, I will go see Dr. Ben Park at Hopkins for this opinion. I have also seen Dr. Eric Winer with Dana Farber (once during my initial chemo, and once last week before surgery), and Dr. Winer, Dr. Park and Dr. Wilkinson will all work together to come up my next course of action. Dr. Winer said he thinks that the best bet might be Xeloda for me, but we're waiting for the Foundation testing and my apt with Dr. Park before deciding.
 
Please let me know if anyone has had a similar experience, and if there are any other resources I should take advantage of to make sure I'm going to beat this horrible disease. I eat extremely healthy, exercise regularly, do yoga/meditation. I wish that had been enough to prevent this recurrence Angry
 
Thank you so much!
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barrycarrot View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote barrycarrot Quote  Post ReplyReply Direct Link To This Post Posted: Nov 30 2016 at 2:58pm
Hi there. I have not had a recurrence yet (and hope not to!) but just wanted to say hello and wish you well. I am somewhat near you in Bealeton, VA and have two young girls that are 7 and 9, and an awesome husband as well. We are all in this together! I'll be praying for you and hope the docs can come up with a good plan of action for you! Hang in there!
Age 38, DX: 12/10/15 Stage 1 TNBC, BRCA-, 7mm tumor in left breast, no nodes, ACT Chemo 1/4/16 - 4/15/16, Lumpectomy 5/16/16, PCR (Praise God!), radiation 6/22/16 -8/3/2016
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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: Nov 30 2016 at 6:42pm
Nbarberie,

I'm sorry you are dealing with this again.  I'm glad you have sought multiple opinions and Dr. Winer is one of the best.  Let us know what your Foundation testing suggests.

If you look at my signature, you can see that initially I was Stage 1.  With my recurrence it was Stage 3a to a regional lymph node(s) - internal mammary nodes.  There is hope!  I'm 6 years out from the second diagnosis.  Wishing you the best.  Keep us posted.

Hugs,
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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Nbarbieri View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nbarbieri Quote  Post ReplyReply Direct Link To This Post Posted: Dec 01 2016 at 11:58am
Hi Donna,
Thanks so much for your reply! I'm still trying to figure out what all the acronyms mean. For your recurrence, you list: Gem,Carb,Iniparib
 
Is Carb - Carboplatin? And what is Gem and Iniparib? I already did AC, Taxol and Carbo, and radiation, so feel like I don't have as many options for the second round of treatment.
 
Also, guessing you couldn't have internal mammary nodes removed, so chemo got them all?
 
Thanks!
Natalia
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 01 2016 at 5:52pm
Hi Nbarbieri: I'm sorry for your recurrence. I just wanted to say from everything I could read and the most current, surgeons have gotten away from automatically taking out ALL the lymph nodes. My wife had them all taken out in 2008 and she ended up with lymphedema. Not sure you should feel bad for not insisting on that, in hindsight.  Studies in recent yrs say not necessary due to lymphedema risk in arm.
They usually take the first line, so you just had two. And no PET was done or MRI followup I guess to show more abnormal nodes? VERY sorry about that, it wasn't caught. Sometimes things happen so fast with TNBC.
I asked my wife and she said she thinks the radiation should have taken care of anything for her in the armpit,  so I guess we still don't know, do we?
They took out 5... 4 had cancer, which was dead("necrosis") from chemo, that's Carboplatin /Gemzar that she had. Not sure if Gemzar is an option for you.
Hoping you let us know how your doing and what the experts come up with.
My wife had Foundation done, and 2 others labs at Moores Cancer Center UC San Diego.


Edited by gordon15 - Dec 01 2016 at 5:54pm
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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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: Dec 01 2016 at 8:44pm
Hi Natalia,

I'll post a link to abbreviations used on this forum.  It's hard to know or remember them all.  Yes, Carb is Carboplatin.  I also had Gemzar (Gemicitabine) and Iniparib.  Iniparib was a clinical trial drug at the time considered a parp inhibitor, but failed to get final FDA approval for bc.  You are correct, the internal mammary nodes could not be surgically removed.  They are the lymph node chain under your sternum and it would required cutting and opening the cavity to remove them.  My onc said time was of the essence and thought chemo and then radiation to mop up any remaining cells was my best option.  I showed no evidence of disease after 2 rounds of chemo, but we proceeded with 2 more chemo rounds, then 40 treatments for radiation.

Here's the list of abbreviations:

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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