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IBC Missed diagnosis..one of my great frustrations

Printed From: TNBC Foundation
Category: TNBC Forums
Forum Name: Inflammatory Breast Cancer
Forum Description: A rare cancer that is often triple negative breast cancer
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=13731
Printed Date: Feb 25 2021 at 12:30am
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Topic: IBC Missed diagnosis..one of my great frustrations
Posted By: SagePatientAdvocates
Subject: IBC Missed diagnosis..one of my great frustrations
Date Posted: Aug 29 2020 at 8:22pm
TNBC family,

One of my greatest frustrations in the last 16 years of being a Patient Advocate has been the failure of Breast Medical Oncologists to properly diagnose Inflammatory Breast Cancer,
(IBC), a very rare breast cancer (roughly 2% of all breast cancer). I have helped about 30 women with IBC over the years and they have been diagnosed with infections (one woman took various antibiotics for her 'rash' for 18 months), while others had many of the symptoms ignored.

https://www.mayoclinic.org/diseases-conditions/inflammatory-breast-cancer/symptoms-causes/syc-20355413" rel="nofollow - https://www.mayoclinic.org/diseases-conditions/inflammatory-breast-cancer/symptoms-causes/syc-20355413

For whatever reason, I have been told by IBC experts I respect, that 70% of women with 
IBC also have TNBC. The converse is not true. 70% of women with TNBC do not have IBC.

But if you do have TNBC I would suggest you familiarize yourself with characteristics listed by Mayo Clinic above. And find an IBC expert who can give you a clinical diagnosis of IBC or rule it out. There are several IBC centers around the country and I can help you see someone if you wish. I cannot make a medical judgement, not will I give you medical advice but I do know several IBC experts. 

Please send me a PM or write me at steve@sagepatientadvocates.org

IBC is a very difficult cancer to treat and normally, if you suspect you have it, the IBC centers will see you, on a priority basis, within one week.

with my love to all here,

Steve






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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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