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My niece just diagnosed with TNBC

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buffalo3 View Drop Down
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    Posted: Aug 20 2014 at 6:55pm
Hi Everyone,
Last night I read messages from this group and found the support incredibly moving and respectful.  So, I just joined so I can be of help to my niece in this overwhelming situation.  She is 32 and lives in CT, not too far from NYC.  She is in the process of the workup that some good oncologist is really moving fast.  She had her PET today, CT, MRI and double mammos tomorrow.  She was presented to the tumor board today at her oncologist and needs a second opinion to do her due diligence.  One of my daughter's is a pediatric oncology nurse and another is an attorney and both have Sloan Kettering in mind.  We have heard/read about Dr. Tiffany A. Traina. 

Does anyone know how we might get a quick appointment for a second opinion with Dr. Traina?  It seems she is quite the go to person for TNBC.  We would love my niece to at least have a chance to see what she has to say. 

It's VERY SCARY.  This young woman is my youngest sister's only child.  we have a big family and we are all trying to find ways to be of support.  My niece welcomes this help as she is so overwhelmed she just wants to "get going".  I understand this and it does seem the doctor has moved from path report last Friday to emergency appointment Monday to PET today and the rest tomorrow...and there seems a big rush.  So, I would not want to slow anything up but what do you all think of getting the usual 2nd opinion no matter what...?

Thank you for being here!



Edited by buffalo3 - Sep 11 2014 at 12:31am
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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: Aug 20 2014 at 7:09pm
Welcome,

You might want to send Steve a private message.  He's a patient advocate and may be able to offer some advice on how to get a second opinion appointment with Dr. Traina.  I think it's very wise she is seeking a second opinion before deciding on a treatment plan.  

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote buffalo3 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 20 2014 at 7:14pm
Thank you for your quick reply, Donna!  I am new...so I don't know how to do a private message to "Steve" but if you can point me to the rule list on how to do this I certainly will!!!  Thank you again. 



Edited by buffalo3 - Sep 11 2014 at 12:31am
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buffalo3 View Drop Down
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Hi Donna, I figured out how to PM Steve!!!  Thank you. Sharbuffalo3
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Aug 20 2014 at 9:59pm
Hi Shar, I've been on both sides of the aisle with this, both a worried sister, daughter and patient myself. It is always impossible but then I've noticed that the Tneg family are all resourceful, loving and determined people so we all do what we must. That isn't to say that we don't hit our limits from time to time so whether you need help like today in getting an inside track, or down the road understanding terms and research, clinical trials all the way over to just needing to vent and find strength we will be here for you and your family.

You will find Steve a 10 on the compassion level and he is well thought of in the professional community with lots and lots of connections. When he doesn't know or can't get an answer he'll always be up front with you and get you as close to an answer as he can. His tenacity is one of my favorite things about him and he's taught me to not be shy about putting that lesson to work!

I'm glad you found us, please do remember to take good care of yourself during this journey. Looking forward to hearing more as your niece finds the best path.
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote buffalo3 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 20 2014 at 10:14pm
Thank you so much Mainy.  It is so good to hear from you.  ALREADY I have talked with Steve and ALREADY my niece has an appointment to talk with him in the AM!!!!  What a gift you all are.

More when I know something.



Edited by buffalo3 - Sep 11 2014 at 12:31am
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Thanks to you all and to Stephen, my niece was already seen by Dr. Traina...and she has a rapid treatment plan in place including surgery, chemo, fertility consult, etc.  If you were not here and helping she would not be in such a good place right now.  THANK YOU to Stephen and to this group!  Dr. Traina is a gem.  She made so much happen in one long day...all the tests missing got done and a surgical consult happened on the spot and genetic consult was done and blood sent off!  OMG.  Amazing.  Grateful.
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Dear Shar,

I am glad I was able to help but the real thanks go to Dr. Traina and to you and your niece. 

Dr. Traina was truly amazing in what she accomplished so quickly. She truly cares about each one of her patients and always tries her best, with intelligence, skill and compassion. Shar, having said that,  I really feel your dedication to your niece, the intelligence with which you did your research and absorbed all the information was paramount and your niece's willingness to get a second opinion were equally important.

As all here know, I never write about any interactions when I am helping a patient but since you did I wanted to comment on where the true thanks should go. Having said that, we have a beautiful family here at TNBC Foundation. I, unfortunately, have been unable to post as often as I did previously and it was Donna who so kindly called my attention to your thread. Thank you, Donna, again and again, for all that you do for our community. You grace us with your presence.

Mainy, thank you for your kind words, even in the midst of your grief. Means more to me than you could ever imagine as does your wise counsel for all of us.

I am so proud of TNBC Foundation and how the culture of helping in a peaceful way permeates the organization. It's on us to continue to be a respectful resource for all in our community and I have confidence that under the wonderful leadership of Hayley Dinerman, ED, we will continue to do so.

Shar, your niece is blessed to have such a caring aunt and cousins. My heart is with all of you. 

with my love to all,

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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Well, Steve, thank you for your kindness and good thoughts.  I will accept them gladly!  However, or AND, IF this site were not functioning I would NEVER have found my way to an appointment or even this doctor...and this forum pointed me to you and you answered.  So, it does take a village.  I am sure I am going to meet you soon since we only live two hours apart!  Sending love and gratitude to you and to this Foundation and all the good people who write in.  It matters! 


Edited by buffalo3 - Sep 11 2014 at 12:32am
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Edited by buffalo3 - Sep 11 2014 at 12:34am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Sep 08 2014 at 9:41pm
Try going up to the top of the page on the left and click on Member Control Panel. It should walk you through whatever changes you want to make.
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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Thanks for replying! 


Edited by buffalo3 - Sep 11 2014 at 12:34am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 08 2014 at 9:54pm
I don't think you can change your user name once you've created it.  You may be able to change your profile information to give you more privacy.  You may want to send ArleneB a private message to see if she can help you.  She's the TNBC Forum Admin.

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 08 2014 at 9:58pm
If you go to Member Control Panel, click on Edit Profile.  Under "Profile Information"  if there is anything you don't want viewed, go ahead and remove it.  Under "Forum Preferences", click on "No" when it asks if you want to show your email address.
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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Edited by buffalo3 - Sep 11 2014 at 12:33am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Sep 09 2014 at 12:08pm
I think I'd just re register. Privacy is important!
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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