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Dear TNBC Family,
I am hoping that by posting these links below, TNBC women and their loved ones will become more knowledgeable about Inflammatory Breast Cancer, even though it is a rare cancer. It is my understanding that "Inflammatory Breast Cancer is diagnosed based upon the result of a biopsy and clinical analysis of the treating physician.” This statement comes from a booklet called Understanding Inflammatory Breast Cancer published by MD Anderson Cancer Center...I am trying to see if the booklet itself is available online...
But here are some other resources that may help determine whether women should have their conditions checked by a Breast Medical Oncloogist who is an expert in IBC. The problem is that such an expert is often hard to find.
http://www.ibcresearch.org/visual-symptoms-of-ibc/ - http://www.ibcresearch.org/visual-symptoms-of-ibc/
http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-types/inflammatory-breast-cancer/index.html - http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-types/inflammatory-breast-cancer/index.html
http://www.fccc.edu/physicians/locations/wcc/ibc.html - http://www.fccc.edu/physicians/locations/wcc/ibc.html
From the Fox Chase link-
"Inflammatory Breast Cancer (IBC) is the most aggressive of breast cancers.
There is rarely a lump and it usually cannot be detected by mammography. Frequently misdiagnosed as an infection, predominately because of the lack of a lump, precious time may be wasted in correctly diagnosing IBC."
I hope this is of some help. I am certain that more women with TNBC will also be diagnosed with IBC. But, in my view, “knowledge is power."
some signs and symptoms from the MDACC booklet mentioned above-
-a breast that appears red, purple, pink or bruised -itching of the breast -a tender, firm and enlarged breast -pain -change in color of the skin around the nipple (areola) -enlarged lymph nodes under the arm, above the collarbone, or below the collarbone -thickened areas of skin and ridged or dimpled skin texture, simple to an orange peel -swollen or crusted skin on the nipple..
I think the most important thing is that any woman who suspects IBC need to see a knowledgeable clinician who is experienced with IBC. Most of the time it is probably not IBC but it should be ruled out by experts. So please do not rely on the pictures in the link or anything written above...if you think you may have IBC, please go to an IBC specialist...sorry to say this but your regular oncologist may not be able to diagnose it properly.
It is also essential that women recognize that you can have IBC and TNBC. A woman with IBC/TNBC was told by her oncologist that it was "impossible to have both at the same time." Simply, inaccurate advice.
Finally, IBC is very rare but we have seen, in our TNBC Family, that it can happen. According to what I was told recently by an IBC specialist “50% of the time IBC is TNBC.” and of course the converse is not true...only a tiny, tiny percentage of women with TNBC will have IBC.
warmly,
Steve
p.s. I just updated this thread because since I wrote this last night I have heard from a woman who saw the pictures and said “that’s me” and she is being evaluated next week at a major IBC Center so I am glad the pictures were posted, and at the same time deeply saddened that she may have this disease; but if she does, she at least will have some clarity and perhaps a new treatment plan can be created.
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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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