What is Inflammatory Breast Cancer? From a survivor

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Tricia Keegan
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Re:What is Inflammatory Breast Cancer? From a survivor - Friday, August 12, 2011 4:39 PM
I remembered you too Kimby but was'nt sure it was the same Kimby lol:)

We're all good here thanks and just celebrated six years out and thankfully all the cats are well too.  I think I have you listed as a friend on FB and I also have Ruth on my friend list so let me know if you'd like  me to send a friend request to you for her?   She's the ibc expert here ha ha......
Good luck with your appt Kimby and hoping this is nothing much to worry about but we still tend to worry! xx
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

Kimby
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Re:What is Inflammatory Breast Cancer? From a survivor - Saturday, August 13, 2011 10:49 PM
Thanks, Tricia! Sure, send me a friend request for her.

Kimby
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Re:What is Inflammatory Breast Cancer? From a survivor - Saturday, August 13, 2011 10:50 PM
Never mind, Tricia...I found her and sent a request. ; )


Claudia413
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Re:What is Inflammatory Breast Cancer? From a survivor - Friday, August 19, 2011 3:21 PM
As a 4 yr survivor of Inflammatory Breast Cancer (IBC), I was glad to come across this thread. I'm on a mission to educate the general population and the medical profession about the signs and symptoms of IBC. Everyone should watch several of the videos on the Inflammatory Breast Cancer Foundation website (www.eraseibc.com) and learn the signs and symptoms of this highly aggressive breast cancer. Please understand that YOU DO NOT have to have all the symptoms to have IBC. I didn't...I only had one symptom and still had IBC. 
Claudia Nixon Fauver
Dx Stage IIIb IBC Aug 2007
4xA/C followed by 4xTaxotere Sept 07-Mar 08
Right MRM May 2008
33 rads June/July 2008
NED since surgery May 08

Arimidex since May 08 - many side effects

mary l
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Re:What is Inflammatory Breast Cancer? From a survivor - Friday, August 19, 2011 3:26 PM
Claudia, I just sent you a message on the other post.  I am an 8 year survivor of IBC stage IIIb Her2+++ this coming Oct.  I was surprised to see your story as there are not too many of us here with IBC.  I would love to her from you.  Mary L
Diag. Oct 2003 with 6mm mass, IDC grade III ductal carcinoma in-situ, Inflammatory Breast Cancer stage IIIB, Her2+++.   I had A/C followed by Taxotere (only had 2tx as I had heart problems from it); Left Mastectomy followed by 35 rads.  Recurence in 9 months as skin mets to mast. site. tx Carboplatin/Herceptin,  stayed on Herceptin every other week for almost 4 years only stopping when my ejection fraction would get too low. off herceptin & ned 3 years in 2010

Tricia Keegan
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Re:What is Inflammatory Breast Cancer? From a survivor - Friday, August 19, 2011 4:08 PM
Kimby, I had already sent it lol!!!
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

Claudia413
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Re:What is Inflammatory Breast Cancer? From a survivor - Saturday, August 20, 2011 11:39 AM
Mary,

I'm still trying to figure out how to navgate this site. I would love to keep in touch. Believe me, you'd be surprised at how many of us IBCers are out there. 
Claudia Nixon Fauver
Dx Stage IIIb IBC Aug 2007
4xA/C followed by 4xTaxotere Sept 07-Mar 08
Right MRM May 2008
33 rads June/July 2008
NED since surgery May 08

Arimidex since May 08 - many side effects

Tricia Keegan
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Re:What is Inflammatory Breast Cancer? From a survivor - Saturday, August 20, 2011 3:55 PM
Claudia, If you hover your mouse or curser over Marys avatar you'll see a drop down menu with an option to send a pm, just click on that and type away and she'll receive it!:)
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

Jenelle
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Re:What is Inflammatory Breast Cancer? From a survivor - Saturday, January 07, 2012 8:49 PM
Its been a few months since anyone posted in here.  My sister has suspected IBC.  She has some of the symptoms ie. redness swelling itching "orange peel" look.  So she went to the minor em. and they put her on a antibiotic and orderd a mamogram...manogram was clear....antibiotic didn't help so she went to the breast health clinic yesterday.  The A.R.N.P told her with looking at a new mamogram and ultrasound she had done yesterday they she HAS IBC.  I am not doubting the DR...UH I mean Nurse but seriously can they DX this without a biopsy?  My sister is distraught she has 3 young boys 7, 7 & 4 and is 27 years old.  She is seeing her life flash before her eyes.  On monday she is going in for another Ultrasound and a POSSIBLE biopsy she said that the nurse said she might not need one ???  Then on tuesday she goes to the cancer center for a full work up going threw her with a fine tooth comb...from a pap smear to a full body scan.  Does this sound like normal procedure???  Can they confirm witout a biopsy?  What else could it be if the antibiotics didnt clear it up and its not cancer?  What are the chances its not cancer?  I am sorry I have a lot of thoughts going threw my head along with the statistics of this cancer.......I dont know where to go from here I feel sick to my stomach and lost.

Tricia Keegan
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Re:What is Inflammatory Breast Cancer? From a survivor - Sunday, January 08, 2012 5:41 AM
Hi Janelle,
 
A very good breast surgeon may be able to guess if cancer is present but there's absolutly no way to know for sure unless a biopsy is done so your sis really needs to insist on this, sometimes IBC does'nt show on a mammo as there may not be a lump so a skin biopsy is performed to ensure a correct diagnosis.
They may want to do a scan to check the cancer has'nt spread elsewhere as IBC is fast growing but its unusual to do a pap at this stage too. 
If your sister is seeing a general surgeon she needs to really see a breast surgeon for this, over 80% of lumps found are benign and there are other infections this could be rather than IBC so please tell your sis a nurse cannot diagnose this, she must have a biopsy and speak to an experienced breast surgeon.
Please keep us posted on how she gets on and I really hope this is something easily treated rather than ibc.  Pals
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

mary l
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Re:What is Inflammatory Breast Cancer? From a survivor - Sunday, January 08, 2012 10:06 AM
Hi Janelle,  I was diagnosed with IBC in 2003.  I had all the the symptoms that your sister has.  They did a mammogram, ultra sound, MRI of my breast and the final diag. was made with a punch biopsy of the breast.  This confirmed the diag. of IBC.  Then they did a full body PET scan to see if it had spread.  I was very fortunate that it had not.  I agree with Tricia that she needs to find a breast surgeon.  Are there any good cancer centers in your area?   That is where you will find the best oncology Dr.'s. 
 
I hope that your sister does not have this but it is treatable and there are several survivors on this site who will be happy to answer any questions or just talk to you.  If she feels able after she gets her diagnosis, maybe you can get her on this site.  It is so nice to have a place to come and be able to talk to others who are just starting their treatments and many survivors.  Please let us know how she is doing, OK?   My thoughts & prayers go out to your sister and you.   Mary
<message edited by mary l on Sunday, January 08, 2012 11:44 AM>
Diag. Oct 2003 with 6mm mass, IDC grade III ductal carcinoma in-situ, Inflammatory Breast Cancer stage IIIB, Her2+++.   I had A/C followed by Taxotere (only had 2tx as I had heart problems from it); Left Mastectomy followed by 35 rads.  Recurence in 9 months as skin mets to mast. site. tx Carboplatin/Herceptin,  stayed on Herceptin every other week for almost 4 years only stopping when my ejection fraction would get too low. off herceptin & ned 3 years in 2010

Jenelle
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Re:What is Inflammatory Breast Cancer? From a survivor - Sunday, January 08, 2012 1:26 PM
Thank so much....I will update as soon as I hear.  Positive thinking!

mary l
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Re:What is Inflammatory Breast Cancer? From a survivor - Sunday, January 08, 2012 1:33 PM
Jenelle, I will send you a private message and give you my email address so you can reach me if you need to talk.   Mary
Diag. Oct 2003 with 6mm mass, IDC grade III ductal carcinoma in-situ, Inflammatory Breast Cancer stage IIIB, Her2+++.   I had A/C followed by Taxotere (only had 2tx as I had heart problems from it); Left Mastectomy followed by 35 rads.  Recurence in 9 months as skin mets to mast. site. tx Carboplatin/Herceptin,  stayed on Herceptin every other week for almost 4 years only stopping when my ejection fraction would get too low. off herceptin & ned 3 years in 2010

Jenelle
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Re:What is Inflammatory Breast Cancer? From a survivor - Thursday, January 12, 2012 9:01 PM
So a little update.....Had a ultrasound on monday the tech ( I think or maybe breast specialist dont know)said that they didn't see any calcification which was good.  She went back for a follow up with her nurse practiner and they said to hang tight she has a biopsy scheduled for next wednesday with a breast surgeon.  They did also mention in her ultrasound they saw fluid.  If they really thought it was IBC would they have waitied over aweek to do a biopsy?

Jean Southward
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Re:What is Inflammatory Breast Cancer? From a survivor - Friday, January 13, 2012 8:50 AM
I know that it sounds like a long time away but really this should be fine.  Best of luck.
Jean S

Hope is that thing with feathers that perches in the soul and sings the tune without words and never stops...at all.

Emily Dickinson

IDC Stage IIB Grade 3 BC DX on 2-10-09
HER2+++
ER/PR+ 90% 
2 of 6 Node Positive
Double Mastectomy 2-23-09
Completed Chemo TC 7-10
Herceptin until 3-20-10
Arimidex for 5 years Started 8-09 

Sandraz66
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Re:What is Inflammatory Breast Cancer? From a survivor - Monday, June 18, 2012 10:37 AM
Hello, Will an ultrasound show cancer in the lymph nodes if IBC is present? I had an ultrasound and it says the nodes are negative but had 3 removed to find out cause. With the path report on the nodes show if positive? Or is it only the punch biopsy that will show positively? I am confused and concerned.
Thank you,
Sandra

Tricia Keegan
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Re:What is Inflammatory Breast Cancer? From a survivor - Monday, June 18, 2012 11:49 AM
Hi Sandra,

If I've understood your question correctly I can tell you the only way to be certain if cancer is present is to have a biopsy of the area or nodes removed as you did, if the nodes are positive the Radiologist will see cancer cells when checking and will note this in the path report, I hope this is what you needed to know.
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

katiemaya
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Re:What is Inflammatory Breast Cancer? From a survivor - Wednesday, August 08, 2012 10:41 PM
Hi all, I have skimmed this discussion board a bit, but I'm trying not to read too much obsessively, so forgive me if the questions I am asking have already been answered. I have some questions about syptoms, diagnosis, etc. with IBC. I am 30 years old, and while I have been slim most of my life, I recently was diagnosed with PCOS and Hashimoto's (thyroid) and gained about 100+ pounds. Thankfully, I have been able to lose a large amount very quickly (60 pounds so far.) I noticed that my left breast has had the dimpling or orange peel effect on it for a while, but my skin all over my body has had so many changes, I didn't think anything of it. I have also had off and on itching on the same breast. I might have had it on the other, too, but I'm not sure. It is not bigger than normal nor hard. Last night, I found a weird hardening of the skin where my breast usually itches. I began playing with it and it got bigger and red. This morning it was back to normal, but slightly red. I still have the orange peel skin, as I guess it's called. I made an appointment immediately with my gynecologist who has called for me to get a diagnostic mammogram and ultrasound. After reading many things within some IBC websites and here, I realize that these both don't detect it accurately. Should I ask for a biopsy first? If so, what kind? Does the itching that occurs sometimes come and go? Can the orange peel thing be caused by anything else? My doctor said that it can, but I'm not sure. Any help would be helpful. Thank you, Katie

Tricia Keegan
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Re:What is Inflammatory Breast Cancer? From a survivor - Thursday, August 09, 2012 6:07 AM
Hi Katie and I just replied to your pm and was going to send you the link to this thread in case it helps, others may not see your question here so clearly though so it may be a good idea to copy and paste it onto the Sound off forum which is the busiest!:)
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

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