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 What is Inflammatory Breast Cancer? From a survivor
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Ruthie1956

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What is Inflammatory Breast Cancer? From a survivor - Friday, February 27, 2009 12:03 PM
Hello, I am an Inflammatory Breast Cancer survivor.  This is a type of BC that invades not only ducts and lobules but the skin, lymphatics and blood vessels of the breast.  It is a fast growing, very aggressive cancer.  Because it is often not recognized, it can metastisize quickly to liver, bones, and lungs.
The symptoms include but are NOT LIMITED  to:
red swollen area of breast
itching of skin or deep itch of tissues
bruised area at site, possibly even an open area
rapid unusual increase of breast size (one bigger than the other)
lump or thickening of tissue (may or may not happen)
pain in the breast
inverted nipple
dimpling or ridges felt in the breast
nipple discharge or discoloration of nipple

Any or all of these symptoms may indicate a benign breast problem.  The answer is to have it checked out whenever you have any changes in your breast.  Because it may not have a lump, many doctors try to treat this as a mastitis, with antibiotics.  If one course does no clear up the problem, seek a breast specialist ASAP. The only way to tell for sure is a punch biopsy taking skin and tissue.  It will NOT show up on Mammograms or ultrasound.

Inflammatory breast cancer can strike anyONE at any age.  Men are not excluded from this equal opportunity cancer.  Current treatment includes chemotherapy first, then surgery, followed by possibly more chemo, then radiation.

You can get much more information at the IBC website, as well as some information on Komen. (haven't found it yet).  www.ibcresearch.org or www.ibcsupport.org

There are a few of us IBCers here at Komen and if you have questions please be sure to write me.  Check out the websites and breastcancer.org also has pictures. 

Thanks for reading and stay informed!
Love Ruth
PS now that you've read this info possibly twice,  Thanks admin for posting the Komen version of IBC.

<message edited by Ruthie1956 on Friday, February 27, 2009 12:36 PM>
Diag. 7/06 2 lumpectomies, no clear margins
Inflammatory BC, DCIS and IDC
Chemo Aug 06-Dec 06
bilat mast 1/07
Radiation 2/07-4/07
Tried all AIs (ER/PR +, Her2 -) 
NED thus far, have RA now

Cancer is like quicksand, the more you struggle alone, the deeper you sink; but if you relax, spread yourself out and reach for help you are rescued! (rufus mcaine)
Ruthie1956

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Re:What is Inflammatory Breast Cancer? From a survivor - Saturday, March 14, 2009 9:15 PM
Hello again
Please let us/me know about any concerns you may have about IBC.  Now that we have a great explanation (both mine and Komens), if there is anything I can do or advice I can give about how to detect, deal with or treat IBC...please talk to me.

IBc is treated differently than other BC and early detection is truly life saving.
Take care all
Ruth
Diag. 7/06 2 lumpectomies, no clear margins
Inflammatory BC, DCIS and IDC
Chemo Aug 06-Dec 06
bilat mast 1/07
Radiation 2/07-4/07
Tried all AIs (ER/PR +, Her2 -) 
NED thus far, have RA now

Cancer is like quicksand, the more you struggle alone, the deeper you sink; but if you relax, spread yourself out and reach for help you are rescued! (rufus mcaine)
MamaShan

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Re:What is Inflammatory Breast Cancer? From a survivor - Tuesday, March 24, 2009 6:56 PM
Hi. Almost 3 months ago my nipple on my left breast starting itching horrible, eventually my nipple got a scaly, dry mark and then my whole breast started itching.  A month after that I got a pinkish mark about the size of a quarter on the same breast and it has been there for about 2 months.  My breast feels heavy but not warm and it doesn't seem swollen or look swollen.  The itching is almost constant.  Anyway, yesterday I went to my gyno and she was concerned about the red mark and mentioned Inflammatory Breast Cancer - she wants to make sure this is not what's going on.  Next Tuesday I am scheduled to have a diagnositc mammogram and an ultrasound.  Do you think that is enough?  If the tests come back normal should I demand a biopsy> I just have a feeling that something is not right.  Thank you in advance for any advice you have to offer.

Shannon
Tricia Keegan

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Re:What is Inflammatory Breast Cancer? From a survivor - Wednesday, March 25, 2009 4:50 AM
Hi Shannon,

I think Ruth is on vacation right now but due back shortly so in case she does'nt see this message I wanted to ensure you received an answer/opinion.   I think the one of the reasons IBC is difficult to diagnose is that there are so many benign conditions that can mimic the symptoms but it's always good to make certain of course and rule it out.
Quite often too we know our bodies better than anyone so if the mammo and us is normal but you're still concerned I'd definatly ask for a biopsy.  I think also sometimes with IBC it can only be dioagnosed correctly with a skin biopsy, but I'm not certain on that as I had a different type of breastcancer.
Please keep us posted as I know Ruth and other's will want to talk more to you when she returns and in the meanwhile I wish you lots of luck and B9 results!   Try not to worry to much as there's more of a chance that it is a benign condition but well done on being so pro active.
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia
MamaShan

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Re:What is Inflammatory Breast Cancer? From a survivor - Wednesday, March 25, 2009 2:02 PM
Hi Tricia!  Thanks so much for your thoughts.  I'll update after my test.  Take care.
 
Shannon
Ruthie1956

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Re:What is Inflammatory Breast Cancer? From a survivor - Monday, March 30, 2009 9:21 AM
Hi MAmashan!
YES ask for a biopsy even if they find something.  They need to do a puch biopsy not just needle extraction biopsy.  A punch biopsy will get skin and tissues around the area, this will better tell if you have IBC as it is centered around the ymph and tissues of the breast.  It usually is in the form of sheets which just show up like fuzzy areas diffusely over the breast.  Mammograms usually don't pick IBC up nor ultrasound.  Good luck and let us know what they and you decide and find.
Diag. 7/06 2 lumpectomies, no clear margins
Inflammatory BC, DCIS and IDC
Chemo Aug 06-Dec 06
bilat mast 1/07
Radiation 2/07-4/07
Tried all AIs (ER/PR +, Her2 -) 
NED thus far, have RA now

Cancer is like quicksand, the more you struggle alone, the deeper you sink; but if you relax, spread yourself out and reach for help you are rescued! (rufus mcaine)
MamaShan

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Re:What is Inflammatory Breast Cancer? From a survivor - Monday, March 30, 2009 12:54 PM
Thanks, Ruthie!  My appt. is tomorrow and I can't wait to go because the itching is terrible - it's the itch within that I can't get to!  The red mark is about the size of a half dollar now and the nipple "scaling" is getting bigger but I'm still not swollen or anything so we'll see.  Thank you for the information.

Shannon
dlt10960

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Re:What is Inflammatory Breast Cancer? From a survivor - Saturday, April 18, 2009 9:58 PM
Hi Ruthie!  I have a new friend who was diagnosed with IBC in February.  Yes, she was initially misdiagnosed with Mastitis and was placed on two rounds of antibiotics.  She was also experiencing migraines at the time and her doctor ordered an MRI.  The base of the MRI showed something but it was cut off, so they did another MRI, this time from the waist up.  Cancer was found on two vertebrae and her hip, but they felt it was coming from somewhere else...soon it was determined via testing that it was IBC.  She's 39, has two small children, and is not handling her diagnosis well at all.  I am a survivor of BC myself (dx'd Jan 08), and have been asked by our navigator to be someone she can relate to.  As an IBC patient initially dx'd at Stage 4, what (in your experience) can I do for her?  What is her prognosis?  Is it possible she can overcome this?  I need guidance and I hope as an IBC patient yourself, you can help.  She is currently in treatment, chemo every Friday for three weeks with one Friday off.  She will be re-evaluated in August as to whether she needs to continue with chemo or move forward with surgery.  She is angry, sad, emotionally fragile, and has absolutely nothing positive about her outlook.  I want to offer her support, hope, and friendship. Thank you for any advice you can offer.
Age 47, Dx IDC, ER90%,PR90%,HER2-(Jan 2008),
SNB 4/5 nodes pos, Stage IIIA , Grade II, 6x7 cm, 
DD AC*4, DD Taxol*4 (Finished 6/13/08!!!),
Dbl mast 7/2/08, Rads complete 9/29/08, No plans
for reconstruction, Started Arimidex 9/30/08
MamaShan

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Re:What is Inflammatory Breast Cancer? From a survivor - Wednesday, April 22, 2009 5:40 PM
Hi Everyone,

I posted almost a month ago about some issues I had going on w/ my left breast.  I was able to get into see a breast specialist who put me on antibiotics for a week.  The antibiotics did nothing so I went back yesterday and the doctor did a punch biopsy.  I should get the results by Friday.  So, I'm still in the waiting game.

Shannon
Ruthie1956

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Re:What is Inflammatory Breast Cancer? From a survivor - Thursday, April 23, 2009 10:29 AM
Hi Shannon
I feel for you in having to wait now.  Its not easy when this is such a scary prospect, but I hope that it comes out that this is just a resistant infection and not IBC.  I'm glad they gave you a punch biopsy.  Be sure to let us know what results you received.  There is also a ton of support at the ibcsupport.org site.  It just takes a little longer for a response. (day or 2)
Good luck!  I'm right with you waiting...
Ruth
Diag. 7/06 2 lumpectomies, no clear margins
Inflammatory BC, DCIS and IDC
Chemo Aug 06-Dec 06
bilat mast 1/07
Radiation 2/07-4/07
Tried all AIs (ER/PR +, Her2 -) 
NED thus far, have RA now

Cancer is like quicksand, the more you struggle alone, the deeper you sink; but if you relax, spread yourself out and reach for help you are rescued! (rufus mcaine)
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