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IBC and NNN

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ddspain View Drop Down
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    Posted: Apr 15 2013 at 10:12am
Hello All,

At what point is IBC identified and/or linked to NNN ?
I am unfamiliar with all of this !

Thanks 
D.
right mastectomy 3-20-13.
1.5 cm
grade 3 tumor
nodes clear
awaiting chemo
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MarissaK View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MarissaK Quote  Post ReplyReply Direct Link To This Post Posted: Apr 15 2013 at 1:33pm
Are you referring to IBC as "Inflammatory Breast Cancer" or "Invasive Breast Cancer"?? They are two different things and either one can be triple negative.

Inflammatory breast cancer is a special form of Invasive BC. It's a rare type of breast cancer that develops very quickly. It makes your breast red, swollen and tender. It occurs when cancer cells block the lymphatic vessels in the skin covering the breast, which is what causes the redness and swelling. A dimpling-type or "pitted" effect (like how the skin of an orange looks) can also appear. Because it's so aggressive it often spreads to the lymph nodes quick.

Invasive breast cancer is cancer that spreads outside the membrane of the breast lobule or duct into the breast tissue. The 2 most common types of invasive BC are IDC (invasive ductal carcinoma) & ILC (invasive lobular carcinoma). With IDC, the cancer cells start in a milk duct. When the cells break through the duct walls & invade fatty breast tissue it becomes infiltrating or "invasive". ILC cancer cells start in the lobules or milk glands & then infiltrates the healthy breast tissue the same way as IDC. IDC is more common than ILC, accounting for roughly 80% of breast cancers. With invasive BC, the cancer cells can stay isolated to the original tumor site or break away & travel to the lymphatics, bloodstream or another organ of your body.

Breast cancer cells are tested for three things: estrogen receptors (ER), progesterone receptors (PR) and a protein called HER2. When your tumor tests negative for all three of these the cancer is classified as "triple negative" (ER-, PR-, HER2-). The negative results just mean that the growth of the cancer isn't being fueled by any hormones (estrogen/progesterone) or HER2 receptors. That's why we are not offered drugs such as tamoxifen or therapies that target HER2 receptors (Herceptin or "trastuzumab"). These are additional targeted therapy drugs that women (whose cancer is being fueled by hormones and/or HER2) are offered in conjunction with or after chemo.

IDC can test positive for any combo of the aforementioned receptors or it can be triple negative. From what I understand, Inflammatory BC is often triple negative or ER-/HER2+.

Sorry for such a long dissertation. Hope this helps!
DX 5/18/12 at age 34. Stage IIIC IDC TNBC, grade 3, 3 cm (multiregional nodal involvement). DD ACT complete 9/5/12. BMX 10/15/12, ALND: 0/12 nodes. pCR. Rads x 25 + 3 boosts completed 2/6/13. BRCA neg
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ddspain View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ddspain Quote  Post ReplyReply Direct Link To This Post Posted: Apr 19 2013 at 12:29pm
Inflammatory is what I was referring to.....

Thanks for the info .
right mastectomy 3-20-13.
1.5 cm
grade 3 tumor
nodes clear
awaiting chemo
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mab View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mab Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2013 at 6:21pm
Hi! I just signed up and am not sure what the procedures are - but here goes.  I would like to get in contact with anyone who has inflammatory breast cancer  (IBC) and is triple negative.
 
I am 81 yrs. old and have had IBC for 5 yrs. now.  Fortunately, it has not spread to any vital organs but it is spreading through my skin and sucking up the oxygen in my blood cells.  It has spread all across my torso and none of the drugs I have had (A/C, taxol, taxotere, gemzar and now navelbein) seem to be able to control it.  Does this sound familiar to anyone?
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Grateful for today View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2013 at 11:46pm
mab,

Glad you found this site, There are many caring and knowledgeable women and men here.
There are a few who also have/had TNBC IBC.   Hoping they will see your post.
(I had TNBC IDC not IBC.........but did wish to welcome you to the site.)

Thinking that if you found this thread that you have found the forum:
     http://forum.tnbcfoundation.org/inflammatory-breast-cancer_forum17.html
where there are many threads related to IBC.

It is frequently suggested to have a second opinion on one's treatment plan especially when
a decision for a new plan is needed.   
There are some IBC experts who have been mentioned on the forums:
MD Anderson    Texas   
    Inflammatory Breast Cancer Center at MD Anderson in Houston
    Physicians there that specialize in IBC: Dr. Vicente Valero and Dr. Naoto Ueno.
        Here are their links-
             http://faculty.mdanderson.org/Vicente_Valero/
             http://faculty.mdanderson.org/Naoto_Ueno/
             http://www.mdanderson.org/patient-and-cancer-information/care-centers-and-clinics/care-centers/breast/inflammatory-breast-cancer-clinic/index.html
Kimmel Cancer Center at Jefferson Hospital in Philadelphia, PA
      IBC expert: Dr. Massimo Cristofanilli
        http://www.jeffersonhospital.org/news/2013/february/massimo-cristofanilli-appointed-director-of-breast-care-center
        http://www.jeffersonhospital.org/related?rel=vp&to=0fa744a3-c81a-4d7d-a9e4-cf04bbed896b&ri=eb9c9510-221c-4f38-a790-7c5beeb0bd76

Realized you are put your location as Florida.
If any member knows of an IBC expert in Florida, maybe that info will be posted.


Sending you many caring and good thoughts,
Grateful for today............Judy

      

Edited by Grateful for today - Jul 17 2013 at 12:02am
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2013 at 7:27pm
Dear ddspain,

Inflammatory Breast Cancer is a very rare, dangerous type of breast cancer. It is essential, in my view, to see an expert in IBC to make certain you have IBC, as it is often mis-diagnosed. IBC is a diagnosis made in the clinic and at times there are no apparent lumps. Often, a 'skin punch biopsy' is done. Judy has listed some good resources below and I am sending you my contact information, if you would like to talk. I am a patient advocate working on a volunteer basis and I am not a medical professional and will not give you medical advice. I have had experience with IBC with several women who also has TNBC. There are no precise figures but often a woman with IBC has TNBC. The converse is not true. Most women with TNBC do not have IBC.

Dear mab,

Judy has pointed you to some good resources. The other thought I have is Johns Hopkins in Baltimore. I will send my contact information if you would like to talk...please see the last several sentences of my response to ddspain above.


........

good luck to both of you..

warmly,

Steve
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote vickid Quote  Post ReplyReply Direct Link To This Post Posted: Jul 28 2013 at 1:33pm
Hey Mab!
I was diagnosed in 2009 with tnbc/ibc and I am doing well, surprisingly to some! I am currently taking Xeloda and I think it's a Godsend to be able to medicate at home. I am 64 years old....
Don't ya just love the Florida heat? I am just south of Sarasota.
Pease let me know if I can ever help!
Vicki
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jul 28 2013 at 1:43pm
Congratulations, Vicki and may your good fortune continue.

warmly,

Steve
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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mab View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mab Quote  Post ReplyReply Direct Link To This Post Posted: Jul 28 2013 at 4:09pm
Vicki,  happy to hear that you are well!  Did your IBC spread throughout your skin?  That's what mine has done.  My torso is all red and though I have had bleeding in the past, none thus far this year.  My question is what does this lead to?  I am currently on navelbein.
 
I will keep you in my prayers!
 
Mary Ann
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Post Options Post Options   Thanks (0) Thanks(0)   Quote vickid Quote  Post ReplyReply Direct Link To This Post Posted: Jul 28 2013 at 8:28pm
Mary Ann,
My skin initially, prior to my mastectomy, was quite bad and it felt almost ( this might sound a bit goofy!) like there was "carbonation' under the skin-a kind of bubbly feeling. I know that, after the mastectomy, my oncologist for many months checked the area for a bubbly appearance- but it didn't happen and that's really all I can tell you about it.
You have seen your oncologist about your concerns? If not-please do so. I never thought I would be the hypochondriac I have become....Please, always get answers to your concerns and if the answer isn't understood keep questioning. We are all individuals and all different and no one cares more about your issues that you.
 
Get  your answers!
My love  to you
Vicki...
I will try to answer anything  you ask but unfortunately, there is no "cookie cutter" answer to your our journeys!
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