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Chaz View Drop Down
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    Posted: Oct 30 2013 at 7:48pm
Hello everyone, am I in the right place? Did a search for TNBC and found you guys My wife found out a lump in her breast was positive last week and it seemed to be okay, we knew what we had to do. Then we found out it was TNBC. Then she did some research and now the tears come because she figures that no matter what she does or how much pain it causes it won't be worth it. She is probably JUST coming to grips with what has to happen and the process needed right? I mean I have read your stories and just because TNbc is difficult to treat it is not impossible, right? She worries that hers will be the type that chemo won't effect
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Natalie View Drop Down
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Chaz,
Your in the right place, it is wonderful that you are looking for support for the both of you.
The number one thing I want to suggest is suggesting to your wife " STAY AWAY FROM GOOGLE " it will only scare and make a bad situation worse.
Although this cancer can be tough and difficult for some, it does not speak for ALL!!!! 
We don't know why treatment works on some and not others, but these boards are filled with people that are long term survivors. A lot of people had treatment and just went on with there lives and never looked back.
Chaz, it is scarey for both of you and this is the scariest part of this process. After some research, a plan in place and treatment started it will be much easier. Please for both your sakes try to stay positive, it soes not have to be a death sentence.
There is a link on the boards here somewhere for TNBC savvy doctors, I would suggest seeking one of these doctors out. I do not know if one is in Philly but I do know there is one at Sloan Kettering. maybe someone else that comes by can post that thread.
Breathe, and take baby steps. 
It is a lot to take in and feel... Don't rush, do research and find the plan that is correct for her.
Please keep us posted. Any support you need this is a fantastic place to come to. Happy, sad, angry, unsure and all questions are welcome.
Maybe you could convince her to come to the boards (in time), we are here for you both.
Natalie
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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123Donna View Drop Down
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Points: 13510 		Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 30 2013 at 8:45pm
Hi Chaz,

I'm so sorry to hear about your wife's diagnosis.  Do you know how big the lump is?  I agree with Natalie, stay away from Google.  This forum has lots of good information and support.  There are many long term survivors on this forum.  Many have moved on after they've finished treatment and you might not see them post as often.  

Here are a couple of suggestions of what I wish I'd known when I was diagnosed:

1.  Seek a couple of opinions.  Find a top research (teaching) or NCCN facility.  Find an onc that is well educated about TNBC.  Get a second opinion from a different facility.  Compare the recommendations and ask questions if they are different.  
2.  Ask if they recommend neoadjuvant (chemo first) or adjuvant (chemo after surgery).  Depending on the tumor size and/or nodal involvement, neoadjuvant chemo may be recommended.  The following link has a compilation list of questions to consider.

http://forum.tnbcfoundation.org/choosing-your-treatment-team-questions-to-ask_topic8937_post88463.html?KW=Questions#88463

There are now seven subtypes of TNBC identified.  Ask if they know which subtype your wife has? 

3.  Is there a family history?  If your wife is under 50, has she been tested for the BRCA gene? 


A couple of links with survivor stories:



Wishing you and your wife the best as you begin this journey.  It's one none of us ever wanted to walk, but this forum and group of people offer so much support and hopefully will make it a little easier on you both.

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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mainsailset View Drop Down
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Points: 5004 		Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Oct 30 2013 at 10:39pm
Chaz, it took some courage for you to come here, but this is a place filled with love and a whole lotta fierce determination so I think you'll fit in just fine.
 
Have you wife take a gander at my stats...hopefully it will give her a big dose of hope and maybe brighten your outlook as well.
 
But yes, this journey takes every ounce of fight in us and then some. But somewhere along the way you'll pause and look around and see that you indeed have what it takes. There are no bad hair days for me now, it's not the end of the world that my bike has a flat, that my puppy peed on my carpet. I'm not afraid of things in the least anymore, well there's a couple of exceptions, but once I learned to focus on being the best patient my doctor had ever encountered and joining in my team's analysis and plans, the rest of life just seems to fall into place.
 
Please remember to take good care of yourself, it's easy to forget that simple important fact that caregivers tend to undercare themselves.
 
I do so wish that your wife will find her way here. We're very proactive in our love of our little family at this site and if I do say so, we take damn fine care of each other.
 
Welcome.
   Mainy
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Lillie View Drop Down
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Points: 3616 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 31 2013 at 12:16pm
Dear Chaz,
 
You may be "Just a husband", but I'm thinking you are a strong advocate for your wife.  To come searching for help, advice, etc. in the face of what you wife may be facing, makes you a "Winner" in my book.  My husband is still my strongest advocate, 7 years after end of treatment. 
 
It is scary, but you have come to a wonderful place for support.  Please keep posting and let us know what the doctor's are advising for your wife, surgery, treatment regimen, radiation and on and on.   Read my stats in my signature and you can see that I didn't start with the best of scenarios.  That was 7 years ago.  Triple Negative is a "mean rascal" but with the correct treatment your wife has a good chance to beat it.
 
God Bless,
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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Chaz View Drop Down
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Points: 5 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Chaz Quote  Post ReplyReply Direct Link To This Post Posted: Nov 01 2013 at 2:07pm
Thank Donna. Her lump is a little more than a half a centimeter...
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Chaz View Drop Down
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Wow!!!! Thank you all. I will be sharing your comments with my wife later. Just reading your replies I know we are not alone.(u guys almost made Me cry at work ) :-) but in a good way.. and yes she already went on google AND THAT'S really when the tears flowed. We had to read twice as much more to overcome the first search. But she is better now, she went to work today
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123Donna View Drop Down
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Points: 13510 		Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 01 2013 at 2:19pm
Chaz,

That's good news.  If my fuzzy math is correct it's under a centimeter and probably Stage 1.

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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Chaz View Drop Down
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Yes, she found it ..maybe two week ago..
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mainsailset View Drop Down
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Points: 5004 		Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Nov 01 2013 at 6:04pm
Chaz, sometime ago I was interviewed by a writer doing an article on Tneg. Her first question was, "So tneg is incurable and the worst you can get, right?" Lucky for her I'd been doing this for awhile and that she was calling from across the country! Nothing would have made me happier than to stuff a sock in her stupid mouth.
 
So yes, a favorite meme with writers who appear on Google searchs is to start out with that lovely doomsday statement. It's so incredibly wrong wrong wrong! So here's why (in my not so humble opinion)
  Stats are backward looking...they have to wait years for their results and so if one instead looks at the curve of research results you'll see that we tneg's are on a strong upward survival line.
  We here are the front line, we live in the moment, you can find just about any question you might ask, answered by people who have lived the question. Think a bit about that, when new drugs come out we're the ones who have reactions, successes, adjustments, and we have them every day, not next year.
  The work on tneg in the last several years has gone from what I called an orphan bc where there were so few 'stats' on us that we were left out of most discussions, but now the big guns trot out their work on us with flags waving. We're the 'in' bc to research.
   And so now when I read a stupid statement like, 'tneg is the hardest to treat' I remember that it's just a stupid statement that writers use because they're lazy. We're not the hardest to treat, challenging maybe, but we give the best results!
   Please tell your wife that her tears are a good thing, because when she's done tearing up, my guess is that her inner tiger will be coming up.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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