Go To Main TNBC Website


  New Posts New Posts RSS Feed - IBC and TNBC
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

IBC and TNBC

 Post Reply Post Reply
Author
fonsjey View Drop Down
Newbie
Newbie
Avatar

Joined: Feb 25 2017
Location: Holland
Status: Offline
Points: 3
Post Options Post Options   Thanks (0) Thanks(0)   Quote fonsjey Quote  Post ReplyReply Direct Link To This Post Topic: IBC and TNBC
    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.
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 12605
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

Back to Top
fonsjey View Drop Down
Newbie
Newbie
Avatar

Joined: Feb 25 2017
Location: Holland
Status: Offline
Points: 3
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
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 12605
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

Back to Top
irinabcra View Drop Down
Newbie
Newbie
Avatar

Joined: Oct 16 2017
Location: Birmingham
Status: Offline
Points: 1
Post Options Post Options   Thanks (0) Thanks(0)   Quote irinabcra Quote  Post ReplyReply Direct Link To This Post Posted: Oct 31 2017 at 10:03am

SUPPORT MORE FUNDING FOR RESEARCH OF METASTATIC BREAST CANCER

This month marks the two-year anniversary of my first breast cancer diagnosis and just one year since the cancer spread beyond my breasts and to my bones. With four children — ages 3, 5, 7 and 11 — I can’t begin to describe how it felt to be told that my cancer is incurable.

Metastatic breast cancer is stage IV breast cancer that has spread to other parts of the body. Someone with this cancer dies every 13 minutes in the U.S.

As Breast Cancer Awareness Month comes to an end, I ask that you not forget about the 155,000 men and women in America living with metastatic breast cancer and fighting for their lives each day. While 20 percent to 30 percent of people initially diagnosed with early stage breast cancer will develop metastatic breast cancer, the funding to support research specific to this cancer is greatly disproportionate to the number affected. Only 7 percent of the $15 billion of funding for breast cancer research is specifically allocated to finding a cure for metastatic breast cancer.

For me, there is no time to debate funding and policy issues within our country’s health care system. My life with cancer depends on access to regular treatments, and it depends on advances in research for new treatments and someday, a cure. I’d like more time with my kids, my family and my friends — which means we cannot just recognize this disease in October.
Please sign the It’s About Time campaign’s petition, which reminds our state leaders to protect our access to treatment through affordable insurance coverage and out-of-pocket costs. If it gives even just one person with metastatic breast cancer more time to be with the ones that they love, it’s worth it.
Breast Cancer Research Aid UK
Donate Here: https://bcra.charitycheckout.co.uk/
Back to Top
 Post Reply Post Reply
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 11.05
Copyright ©2001-2016 Web Wiz Ltd.