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)

Tricia Keegan
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Re:What is Inflammatory Breast Cancer? From a survivor - Thursday, April 23, 2009 4:20 PM
Good luck from me also Shannon,please keep us posted and we'll have our fingers crossed for you:)

DLT10960, I'm sorry about your friends diagnosis, you could send Ruth a pm for a quicker reply to your question?
It may be useful to also check out www.eraseibc.com for advice.
I've known some ladies who can live for years with bone mets in tx on and off but still have a good quality of life.  I know ibc is more aggressive so no doubt the Dr's will be treating her accordingly. I hope she can beat this, and I think you're doing a wonderful thing already just by being there for her and gaining info and advice. 
My best wishes to you both.
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 - Thursday, April 30, 2009 9:03 PM
Hi Ladies,

My biopsy came back benign so that's great.  We don't know what the problem is yet but I'm very relieved to know it's not cancer. 

Thank you for the great info. and support.  I wish you all the best.  Take care.

Shannon

Tricia Keegan
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Re:What is Inflammatory Breast Cancer? From a survivor - Friday, May 01, 2009 3:48 AM
Wonderful news Shannon, thanks for coming back to tell us and I hope you never have to go through that stress again!

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

Ruthie1956
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Re:What is Inflammatory Breast Cancer? From a survivor - Friday, May 01, 2009 12:30 PM
Great Shannon!  I am so happy for you!  Good luck!
Love 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)

Ruthie1956
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Re:What is Inflammatory Breast Cancer? From a survivor - Tuesday, May 19, 2009 8:38 AM
OK Its been awhile, and I want this forum to keep going.  I'm hoping that its because we are such a rare bunch that no new folks have been diagnosed ! YAY!

While at the Race for the Cure last weekend, I was sitting in a chair for the survivors picture.  WHo should sit down next to me, but a young gal, bald head under the hat, obviously undergoing chemo.  We chatted for awhile about the misty rain then I asked her story.  She began by saying that she was first diagnosed with an infection...I nearly fell off my chair!  Then she proceeded to talk about IBC and its prognosis, but that she had only 1 node positive.  I sad OMG! I am an IBC survivor, of three years!.  She was as surpised as I was because she thought she was the only one, its so rare.  We talked (quickly) through the ceremony and I assured her that stats are old and not applicable much in the US to go by.  She was reassured and I told her of the IBC support site.  Wish I had had something to write down for her and get her phone number at least.  I also told her to come to the Komen site...hope she does!

Lord chemo brain is so hard sometimes....!

Love 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)

amy in dallas
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Re:What is Inflammatory Breast Cancer? From a survivor - Monday, June 01, 2009 2:25 PM
Hi all - my name is Amy, I'm in Dallas TX.
I was dx 2/9/09 with stage 3 her2 pos IBC.
In a clinical trial for Tykerb have done 4 rounds of FEC, just started 12 of taxol.  Trying to find a support group where
I 'fit'...

Ruthie1956
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Re:What is Inflammatory Breast Cancer? From a survivor - Monday, June 01, 2009 5:26 PM
Hi Amy!
Well there are not too many of us IBCers, but I'm one, and the rest of the BC ladies and gents here are all too able to talk to you about BC in general and they are great!  So are you going to get the tykerb or are you in another group... I never had tykerb or had any trial done.  I was very advanced and they slammed me with AC and Taxotere.  I was lucky that it did the trick but not sure it  was in time for no mets.  But so far I am NED for the last 2 yrs.

Would you share with me more of your story?  or you can PM me too.  Also there is an ibcsupport.org group too.  They are great there too but not as immediate as here...I say that with tongue in cheek!  Only by talking directly can we be immediate.  But I try to keep up with things here.  There is also eraseibc.org site, as well as ibcreasearch.org.  Those last have a lot of information for diagnosing initially.  Breastcancer.org also has many pictures and descriptions of things to do with BC in general.


Hope to hear back from you. 
HUGS!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)

amy in dallas
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Re:What is Inflammatory Breast Cancer? From a survivor - Tuesday, June 02, 2009 10:55 AM
Hi Ruthie,

Thanks for the quick response,  I know IBC is rare, but it's amazing to me just how rare we are!!!  Just makes us super special, right???

I have had 2 benign lumpectomies on my left breast in the past few years.  Noticed some changes in my right breast, but it didn't click until 2/2/09 when I had an email from a friend - a video news report from Seattle regarding IBC.  I went home that night and told my husband I thought I had IBC.  2/4/09 had updated mammogram/sonogram (had been clear 05/08) - 02/06/09 had biopsy - 2/09/09 diagnosed with BC - 2/10/09 had 2nd biopsy for IBC - 2/11/09 - IBC confirmed.  Within 2 weeks was in clinical trial for Tykerb.  Yes, I am taking Tykerb, oral chemo every day.  In addition have done 4 rounds of FEC every 21 days and now doing Taxol every Friday for 12 weeks. Everthing has been such a whirlwind.  I did not have a 'lump' at first, but one grew from nothing to approx egg sized in about 2-3 weeks.  That is now gone thanks to the Tykerb!!!  I don't know if I'll have radiation yet, but do know that double mastectomoy and reconstruction is my future. 

Other info about me - I'm 53, married, 1 daughter in grad school at UT/Austin, 2 stepchildren in Houston and 1 step-granddaughter who just turned 5!!!

I tried Gilda's House here, but just wasn't the right fit for me.
I'm new to all this message board/posting and to all the cancer 'lingo' so hope I've got it all right!!

Amy

Ruthie1956
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Re:What is Inflammatory Breast Cancer? From a survivor - Tuesday, June 02, 2009 11:49 AM
Hi Amy,
You get the lingo just fine.  How are you doing on all that chemo?  Hope that you are feeling mostly good.  Speaking of lumps etc.  I had pain as first symptom (in my rt breast).  When I went to look it was red and swollen area went from tip of pinky size to length of my longest finger over a weekend.  By then my underarm nodes were sore.  Unfortunately I got stuck with a young cocky surgeon who thought we were all in an uproar for nothing.  Even when the pathology was back positive, he said is was impossible, because I didn't have peau d'orange skin.  Well excuse me but you don't have to have that or all symptoms to have IBC.  Whenever I see him now he's got his head down and barely says hello...

ANyway, I was diagnosed in 2006, had AC x 4 and Taxoterex4 in dose dense infusions.  then I had a double mast Jan 07, but no reconstruction.  then rads.  I am currently dealing with the effects of Rheumatoid arthritis, triggered by the chemo I think, but may have happened later in my life anyway.  The thing about chemo is that it tends to push the years ahead for you if your body is prone to things like this.  So when I  say I feel 80 yrs old its because my body hurts and I probably am about 70...lol!  BUT better living thru chemistry.  They always have a new thing to try.  I am so glad they are still trying!  I'm not ready to give up thats for sure!

This is not to say this will happen to you by ANY means either! Let me be clear about that.  My body tends to live by murphys law at times.

I have 2 teen age boys Ken 17, and Scott 15.  Both taller than me and Scott is still growing at 6ft +.  MY husband Roger works in the schools so we get summers off all together.  I am currently under a long term disability.

I started a support group in my town with 2 others because we couldn't find and BC groups closer than about 40mins away.  We have a few people who come all the time and a few who are in and out.  Its a nice group, and funto do things together.  We did the Race this year together.

Well I'll keep coming here and seeing if any other questions you may have.  They may be changing things again soon in regards to how the forums stack up.  Please keep searching and if you have a question about where to post, go to Sound Off first...they will help you out too!

Take care and I hope things are going well for you.
Love 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)

ateepay
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Re:What is Inflammatory Breast Cancer? From a survivor - Tuesday, June 09, 2009 11:25 AM
Hello Amy,

It still amazes me after 3 years the KOMO story on IBC, called the Silent Killer, is still helping women.  My daughter and were on that piece you watched.
There are many many women with IBC, and too many to count on www.ibcsupport.org.
That is a site you should join, as the people there are fighters, supporters and advocates all related to just Inflammatory Breast Cancer.  Also through that portal you can connect with women in your area and possibly a support group for IBC.
The statistics might say that IBC is 'very rare', but I have seen too many women with this to believe it is that rare.

Visit our website sometime and you will see the giant strides in treatment for IBC.
KOMEN has helped the IBC Clinic in Houston TX with millions of dollars, and you are lucky (if I read you right) that you are in Texas.  The first and only dedicated IBC Clinic right on your backdoor step.

Wishing you well,

Patti Bradfield, President
The Inflammatory Breast Cancer Foundation
www.eraseibc.com
<message edited by ateepay on Tuesday, June 09, 2009 11:26 AM>

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