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Help Needed...TNBC Inflammatory

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MrsLyons View Drop Down
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    Posted: Jul 12 2011 at 7:16pm
Hello All,
 
I have written a few times and had a few discussions on behalf of my own tnbc diagnosis. However, this time, I am writing to ask questions on behalf of a friend (who I've met through treatment). She has Inflammatory TNBC and is in her early 40's. She has been through the same treatment that I've gone through is about a month behind my timeline.
 
So, she had AC and then Taxol. She waited longer than she would have liked to get her surgery, due to insurance issues and doctor schedules. However, she had her BMX w/recon last Wednesday (July 6th). She just heard from her breast surgeon that "there is still cancer in her breast"..."there's a patch left". Her surgeon and her onc are working to get her fast tracked to rads ASAP and then probably more chemo.
 
She was pretty upset when we spoke and she ended up cutting the conversation short, as her family was calling in. However, I don't think I understand enough about what inflammatory breast cancer is. What could they mean by "a patch" being left in her? She said "its sticking to her cells"....I am so confused and just want to offer her support and advice. She's in freak-out mode for sure and I cannot blame her. Knowing what I've been through to date, I would be the same in her shoes. I just find myself thinking in terms of a "tumor" and I know that's not necessarily right when it comes to inflammatory, right?
 
I wanted to ask what you think, as I know you all have so much information and can probably point us in the right direction. I do know her onc has been consulting with MD Anderson on her case and other than what I've written above, that's about all I know.
 
Thanks in advance for all your help.
 
Hugs,
Tina
DX IDC TNBC 11/10 age 32, Stage 3a, Grade 3, 3.5 cm, 1/9 nodes, Right, KI-67 91%, BRCA-1, ACx4 (12/13/10) followed by TXx12, BMX w/expanders (6/1/2011), Rads begin 7/11/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MrsLyons Quote  Post ReplyReply Direct Link To This Post Posted: Jul 12 2011 at 7:24pm
Oh, I also know that she's BRCA 2+
DX IDC TNBC 11/10 age 32, Stage 3a, Grade 3, 3.5 cm, 1/9 nodes, Right, KI-67 91%, BRCA-1, ACx4 (12/13/10) followed by TXx12, BMX w/expanders (6/1/2011), Rads begin 7/11/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 12 2011 at 8:15pm
Tina,

MD Anderson started the first IBC clinic in the country so it's good her doctor's are consulting with them.  Here's another thread discussing IBC with some information that might help your friend:

http://forum.tnbcfoundation.org/just-posted-inflammatory-breast-cancer_topic8338.html?KW=inflammatory+breast+cancer
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 SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jul 12 2011 at 8:50pm
Dear Tina,

Inflammatory Breast Cancer, in my unprofessional understanding, can be a highly complex disease, often very difficult to treat. 

My suggestion is that your friend actually go to MD Anderson and get their opinion directly. It is quite possible that the ‘consulting’ arrangement is working fine but IBC is so serious that I would rather your friend see one of the IBC specialists at MD Anderson. The ‘consulting’ can continue from that point forward but I think an in-person assessment can be important.

Dr. Naoto Ueno or Dr. Ricardo Alvarez are two that come to mind-



I have not met Dr. Ueno but I understand he is an outstanding oncologist. I have met Dr. Alvarez and I think he is excellent as well.

I will be at MD Anderson from July 15-22 maybe even a bit longer. 

I am sending you my contact information in case you would like to get in touch. Happy to talk with you and/or your friend.

I think it’s great that you are helping your friend. My heart is with her. IBC is particularly tough as is the BRCA mutation. I am BRCA1+ and unfortunately passed the mutation on to my daughter.

all the best,

Steve

p.s. MD Anderson has some proprietary clinical trials that may benefit your friend..






Edited by steve - Jul 12 2011 at 8:58pm
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote MrsLyons Quote  Post ReplyReply Direct Link To This Post Posted: Jul 13 2011 at 12:34pm
Steve and Donna,
 
Thank you!! I'll pass all this information along for her. I really appreciate the help!
 
Thanks,
Tina
DX IDC TNBC 11/10 age 32, Stage 3a, Grade 3, 3.5 cm, 1/9 nodes, Right, KI-67 91%, BRCA-1, ACx4 (12/13/10) followed by TXx12, BMX w/expanders (6/1/2011), Rads begin 7/11/11
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