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Just diagnosed w/TNBC IBC

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Lizajane10 View Drop Down
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    Posted: Sep 18 2018 at 1:40pm
I was initially diagnosed in 2016 with DCIS breast cancer.  Had chemo, lumpectomy and radiation.

This year, I was diagnosed with Metastatic TNBC IBC.  I am so over this and have not even started yet.  I won't go into great detail, but first they thought the rash was related to heat, then radiation dermatitis until I demanded a biopsy. Long story short, it has now been months that I have been waiting for test after test results.

Went up to Dana Farber and was admitted to clinical trial but decided it was too far to travel.  Will be going to MedStar Georgetown for clinical trial.  I will be getting a carboplatin along with immunotherapy.

This is very scary and I am just numb.  Glad to have found this foundation.

Best,
Liza
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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: Sep 18 2018 at 6:11pm
Hi Liza,

I can't imagine what you are feeling right now.  I'm glad you demanded a biopsy and they identified it correctly.  

There is a thread dedicated to IBC. 


Also check out the IBC organization.  The founder is a TNBC IBC survivor.



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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wildgal7 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote wildgal7 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 18 2018 at 8:44pm
Hi Liza,
Our diagnosis somewhat similar..So sorry you had to be your own advocate to get a biopsy..I had much more aggressive care..
Short story IDC 2008 Mastectomy.No chemo.arimidex 5 yrs.
Feb 2018..brochitis chest xray..showed nodule..Mets to lungs..On chemo pill Ibrance and AI letrozole.
PET Scan..showed nodule left breast..Biopsy..TNBC..Several choices..Left Mastectomy May1st..Subsequent lymphedema month and half later..Age 78 back on jet ski slowly lol..canoeing. Can't taste ty chemo and other occ side effects.CT Aug showed drug not working YET!!!.Had another PET today..See Dr Fri for results..Prayers for US!
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