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IBC and TNBC

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fonsjey View Drop Down
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    Posted: Feb 25 2017 at 9:59am
How to convince the doctor that I may have TNBC aandIBC so that I get a skin biopsy?
In my country, The Netherlands, there is little knowledge of IBC eg that absence of orange peel-like skin is proof that a patient has no IBC.
On Jan. 13,2017, I was diagnosed with TNBC cT2 N0 M0 grade 3,
Jan 10 tumor size 2,3 centimeters mammography
Jan 27 tumor size 3.2 centimeters MRI
Feb 23 tumor size 3.1/3.2 other hospital breast echo (ultrasound?)

Still no treatment.
I have been saying from day 1 that I worried it was IBC. It was painful and growing fast. They just don't believe me.
The bump kept growing and my breast looks and feels horrible. Getting bigger, wider, purple colour. A lot of pain.
The echo doctor yesterday told me 'there is just a lot of inflamed breast tissue as a reaction to the tumor'. I wanted to believe him, but I can't.
I have gone ta new hospital but still noone believes me.
Please help me. I feel that i am slowly dying here.
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123Donna View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 25 2017 at 1:13pm
fonsjey,

Please send a Private Message to Steve.  He's a patient advocate and might have some suggestions for you or a contact in your country.  His user name is SagePatientAdvocates.

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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fonsjey View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote fonsjey Quote  Post ReplyReply Direct Link To This Post Posted: Feb 25 2017 at 5:12pm
Thank you, Donna.
I sent Steve a private message.
To all: Sorry for sounding a drama queen in my mail.

Yvonne
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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: Feb 26 2017 at 10:41am
Yvonne,

You are not a drama queen!  You have every right to be concerned and I think it's better to rule it out instead of worrying.  If something doesn't feel right, keep fighting for you! Please keep us posted on what you find out. 

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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