What is Inflammatory Breast Cancer? From a survivor

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AlaskaAngel
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Sister with Sister with IBC - Thursday, July 01, 2010 6:06 PM
Thanks Trish, for some genuine personal and observational info about the taxanes. Big Sis is mostly a real wuss. (She thought tamoxifen alone was tough going last time around!) Hopefully she will be among those who find a taxane easier to do than the A/C. Everybody has a choice to make about these things, and she has to make her own. I'm hoping to find out whether or not she would fit with having the taxane with trastuzumab or with lapaitinib or with erlotinib, before she "uses up" her taxane cycles without any of those.
 
Hoping away,
 
A.A.
 
Dx 2002 age 51 - still NED
IDC 1.6 (Stage 1, T1c), some DCIS
ER+/PR+,HER2+++
bc granny, mom, sis, aunt, cousin; OVCA aunt
 (sister had IDC stage I, just re-dx'd with IBC)
BRCA 1 & 2 neg
CAFx6, IMRT rads, tamo 1 3/4 yr
radiation-induced fibrosis
no taxane, no trastuzumab, no AI
Trials: Early Detection OVCA; 2004 use of low-dose  
  testosterone by bc survivor
On the road again, 3 mi/hour, 1 hr/day; stepper;   stationary bike 

Tricia Keegan
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Re:Sister with Sister with IBC - Saturday, July 03, 2010 3:10 AM
AA,

If she's her2+ I imagine they'll definatly add herceptin or one of the other's to the mix.  So far it worked for me! :)
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

barbwire930
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Re:Sister with Sister with IBC - Saturday, July 03, 2010 9:30 PM
hi all,
I just finished my second round of taxtoere and this stuff is killing me the taste is so horrible and the mouth sores are so awful i have not been able to eat. all the food is so bad the only thing i can do is gag so now I'm really weak. the first treatment i passed out while parking my car and did some damage and time in the hospital. this treatment i again couldnt eat and got so weak and had to go to the hospital again, and my face all red & swollen, tongue swollen so bad both times i couldnt talk! skin on my feed red and burning. I am thinking of asking my onc to switch drugs or hospitialize me for a week til it passes! any advice?  thank you

Tricia Keegan
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Re:Sister with Sister with IBC - Sunday, July 04, 2010 3:37 PM
Hi Barbwire,

I'm no Dr but it does sound like this is not a normal side effect but an allergic reaction to this drug. (Tongue swelling is not normal)....did they give you benedryl by iv before the taxotere?
I'd definatly speak to your onc about this, sometimes simply slowing the drip can help, but maybe taxol may be more tolerable for you.   I definatly would'nt continue with this drug, as to the mouth ulcer's, if you check out the chemo forum there are lots of tips to help, I think I had nystatin which helped but ask your onc for something for this also.  :)
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

daisy22
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IBC - Friday, August 13, 2010 3:25 PM
I felt a small hardish area on my right breast in April 2008, so I went to the Dr immediately and had a mammogram and an ultrasound.  The radiographer said there was nothing serious, so my doctor prescribed some hormone cream.  2 weeks later my breast had swollen considerably and had developed a bloody discharge from the nipple. I went back to the doctor who sent me off to a specialist.  The specialist didn't think there was a serious problem, he took a swab of the blood from the nipple and sent me off to see another specialist as he thought I had a ductal problem.
 
The 2nd specialist didn't think I had a serious problem, he couldn't detect anything from the mammogram or the ultrasound but he said I needed an operation to remove all the ducts.
 
6 weeks later I was booked in for surgery to remove the ducts. By this stage my breast was as swollen as a melon and itched all the time.   The tumour mass was more than 8 cm.
 
When the doctor came to see me after surgery he had bad news, I had cancer!  It had been 9 weeks since finding the initial hard area.  I was shocked, devastated, horrified, thought I was going to die, no one I knew had ever had cancer before so I didn't know what to expect.
 
When I saw the oncologist he could see immediately that it was cancer from the mammogram and ultrasound.   Then followed 6 rounds of taxotere along with Herceptin as I was HER2+.   The chemo shrunk the mass very well and I had a complete mastectomy with lymph node clearance in November 2008, followed by radiotherapy x 5 weeks.
 
I'm pleased to say none of my nodes were affected and they got out all the cancer and so far I have been trying to get my life back to normal.  It's hard though, still.
 
I still have an ache in my ribs on the same side, sometimes it is more sore than other and have problems with pain/numbness/burning in my arm.
 
But, I am here today and am thankful for that.
 
Take care all

Tricia Keegan
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Re:IBC - Saturday, August 14, 2010 8:24 AM
Hi Daisy,

I'm so glad you had such a good response to the chemo, and have managed to go forward and enjoy your life after bc!!:)
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

Ruth Coates
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Re:IBC - Saturday, August 14, 2010 9:24 AM
Hi Daisy,  Thanks for your story.  Unfortunately it is all too common a theme of Drs not recognizing or refusing to accept the possibility of IBC.  I have run into those myself.  Fortunately for me, I am a nurse with contact to a good oncologist who steers me in the right directions...
I'm glad things have worked out for you and that your nodes had no involvement.  Tht is such a good thing with this disease!
Good luck!  Come join us on facebook if you like.  You can find me there as well.
Love Ruth
Paw Paw MI 
6/06 IDC,7/06 IBC (Inflammatory BC) RT
2 lumpectomies still no clear margins
chemo 8/06-12/06 
Bilat mast 1/07
rads 2/07, arimidex 6 mos, 1/08 femara, 10/08 aromasin
6/10 tamoxifen, now Rheum Arthritis
Pet scan NED x3 yrs

daisy22
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Re:IBC - Saturday, August 14, 2010 3:45 PM
Thanks ladies

How do I find you on FB?

Tricia Keegan
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Re:IBC - Saturday, August 14, 2010 3:51 PM
Daisy, if you look for me Tricia Keegan (from Ireland)  I can put you in touch with Ruth and many others from komen.
My avatar is my of my somali kitten Sammy, he's a cream colour and the pic is of him beside some flowers on my garden table so fairly easy to spot I think:)

If you don't find me search for her2 survivors, I check it daily so post there and I'll see it, you may also see me there to add as a friend:)
<message edited by Tricia Keegan on Saturday, August 14, 2010 3:52 PM>
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 - Friday, October 29, 2010 10:48 AM
Good Morning Ruthie 1956.  My name is Mary and I too am a Inflammatory Breast Cancer Survivor.  I was diagnosed in 2003 and was staged IIIB and given an 28% chance.  Well I am still here and it is 8 years this month.  I was HER2+  so when it returned 9 months after all the routine chemos, mastectomy and radiation, I was started on Herceptin along with carboplatin.  In 3 weeks the red raised rash that was spreading across my chest started to fade and 3 months it was gone.  I stayed on the Herceptin every other week for 5 years only stopping it when my heart tests showed that my heart function was slowing down. I had 3 recurrences during the 5 years of Herceptin.  I have been off the Herceptin for 3 years and cancer free 3 years this month. One of the wonderful ladies that sent me a message told me to llook for your name as you had IBC.  A friend of mine suggested that I join this website because I seem to having problems getting back to my precancer self.  I went through so many years of treatment and even 3 years later I feel a little lost and need a kick-start.  My husband understands but my kids{grown} don't. Did you have this problem?  I am so thankful for my survival and I love HERCEPTIN.  My cardiologist says that my heart is perfect and if my cancer comes back I can go back to Herceptin.  I hope you are doing well and that you will send me a message.    Fondly, Maryl
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

mary l
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Re:What is Inflammatory Breast Cancer? From a survivor - Tuesday, November 02, 2010 7:14 PM
Hi Ruth.  I am a IBC survivor for 7 years.  3 years cancer free.  My sister who lives in CA has been telling me about these different symptoms she was noticing on her breast. IE, discoloration of the underside of her breast, warm to the touch, burning sensation and nipple inverted and getting more inverted in a short time.  I know the symptoms of IBC all to well and I think she has all of them.  She had a mammogram and of course it was ok.  Then she had an ultrsound which they said was stable.  I sent my article about my fight with this cancer to her and her husband took my sister to a breast surgeon and gave the Dr. the article.  Well, now my sister is scheduled to have her affected nipple removed to see what's going on.  Have you ever heard about this?  I know I havn't and I am very concerned.  Why would you do thiis when you don't even know if she has IBC.  No mri or punch biopsly have been done.  I am very concerned.  If you can, please let me know what you think.  I'm going to try and talk to my onc. tomorrow.    Thanks,    Mary L
<message edited by mary l on Sunday, January 08, 2012 10:59 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

lihalee
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Re:What is Inflammatory Breast Cancer? From a survivor - Monday, November 15, 2010 12:40 PM
Hi
  I am 37 years of age and I live in the Caribbean.  Late August a I noticed a strange sensation under my breast bear the rib, then a tingling/tickly feeling on my nipple and side of breast near armpit.  Sometimes my breast would feel warm, my doctor did an ultrasound,nothing showed up and put it down to glandular tissue pressing on nerve.  However he told me to do a breast diary for a month and come back to him.  I noticed at the end of October  one side of my bra  was getting tight.  I went back to him he has suggested a breast MRI.  I am due for a MRI on Thurdsday from the second of November when I last saw  him to today the breast has swollen considerabley. My bra is now a tight squeeze.  Of course he doesn't think it is IBC at all I think otherwise.  I think he is still looking for a red, rash,hot, swollen breast and as I have read IBC doesn't look the same for everyone. The next few days are going to be the longest days of my life

Tricia Keegan
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Re:What is Inflammatory Breast Cancer? From a survivor - Monday, November 15, 2010 2:31 PM
Well done for being so pro active Lihalee, I really hope it's nothing serious but better to check to be certain:)
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

lihalee
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Re:What is Inflammatory Breast Cancer? From a survivor - Thursday, November 25, 2010 6:44 PM
I had my breast MRI based on the findings the doctor felt that a biopsy was not needed. The MRI showed both breast had a mixed fatty and dense background. The pre contrast showed no mass and no evidence of any inflammatory process. On the post contrast images the only abnormality was a 7mm mass that has features of a fibroadenoma. Nevertheless I said to the doctor "my breast is swollen and there is a mass there so lets see what that is" He did a core biopsy and on my insistence took a piece of skin.  I get my biopsy results next week

Ruth Coates
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Re:What is Inflammatory Breast Cancer? From a survivor - Thursday, December 09, 2010 11:12 PM
MY humble appologies to any and all who have postede here and not heard from me.  I have been in FL caring for my mother who has been diagnosed with inoperable lung cancer.  She is undergoing chemo and I am helping her thru that.  So I have been absent here and from FB for the large part (just occasional lurk there.).  

Mary L, I congratulate you on your survivorship.  I have been NED or cancer free since 2007.  Your story sounds very typical of Drs who can't be bothered or mistake a breast swelling for infection or "ductal problem".  I'm glad that you are doing well and continuing so.  

As for getting back to that pre-cancer self, well every event in our lives changes us, and cancer is a huge event.  getting back to pre-cancer self is sadly probably impossible.  Its hard to strip away the knowledge of the end of one's own mortality. BUT (and its a BIG one)  you can make the most of the new self you've become.  A self-reliant, strong, and resilient woman.  We know the value of doing things today, because tomorrow may be too late.  Not that I want to have that in the front of my mind constantly, but it is there, telling me that one day it will be too late to say a kind word to a friend, or to tell my husband I love him, or give the advice my son needs to navigate life.  SO I do it now, along with the other thousand things life throws at us every day.  But when the opportunity arrives to do something special, I go for it.  Not to be hedonistic but to enjoy life and love the  life I have NOW.  Today is the only day I can do something about.

So, yes we've been changed but I say its for the better.  We are strong enough to challenge anything because we've already met the worst challenge of our lives and CONQUERED IT!  And should cancer rear its ugly head again, we'll do it again! Because we know we can!

If you'd like to, write to me privately.  My e-mail should be on my profile.  You can also find me on facebook under Ruth Coates.  Just remind me that you're an IBC survivor on Komen.  I'll probably remember you but you know, chemo brains! :)

Again sorry its taken me so long to answer...
Hugs Ruth
Paw Paw MI 
6/06 IDC,7/06 IBC (Inflammatory BC) RT
2 lumpectomies still no clear margins
chemo 8/06-12/06 
Bilat mast 1/07
rads 2/07, arimidex 6 mos, 1/08 femara, 10/08 aromasin
6/10 tamoxifen, now Rheum Arthritis
Pet scan NED x3 yrs

Kimby
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Re:What is Inflammatory Breast Cancer? From a survivor - Friday, August 12, 2011 12:59 AM
Hi Ruth,
 Thank you for the info on IBC. Do you know if it is common/possible to be diagnosed with IBC after being diagnosed with breast cancer that has a lump? I am freaking out here....just developed a red, warm-to-the touch breast while on vacation. It happens to be the same breast that I was diagnosed with breast cancer five years ago. The breast feels "full" and tender. I have also had lymphedema back when I was going through treatment. I had 12 nodes removed on that side. My arm is not bothering me, though, just the breast. The breast feels similar to how it felt (to a lesser degree), when I had mastitis back when I was breastfeeding. I'm not ill, no fever.
 I did go to the walk-in clinic tonight. I am not real encouraged as the PA stated a few "facts" which I know to not be true...breast cancer doesn't hurt....five years is the number we're shooting for in survival...since I had a recent mammo that was fine, there really isn't a concern. I know IBC is more rare. Still, you can imagine my concern with the history and all. I did come home with a heavy-duty antibiotic. The PA told me to follow up with my doc by the end of next week, sooner, if there is no improvement.
 Thanks, Ruth!
Kimby

Tricia Keegan
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Re:What is Inflammatory Breast Cancer? From a survivor - Friday, August 12, 2011 7:32 AM
Hi Kimby,

I just wanted to let you know that Ruth does'nt back here too often to check in but if you send her a pm she'll get an e mail notification from Komen and will be able to get back to you:)

Congrats on your five years and although I have'nt had ibc myself I know we all need to stay aware of the risks, hoping this is nothing sinister and you get some answers soon:)
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

Nuzzys Nana
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Re:What is Inflammatory Breast Cancer? From a survivor - Friday, August 12, 2011 10:15 AM
Kimby,
 
I remember your name from way back! Are you the same person who used to post about 5 years ago?
 
Please let us know what you find out about your latest "scare". Someone who posts here recently had "cellulitis" in a breast with symptoms similar to yours. I believe antibiotics took care of things.
 
Best wishes.
Lumpectomy 4/14/05 at age 69
Stage 1, 2cm, Node Negative
Grade 3, Triple Negative
AC/Taxol, Radiation,
BRCA2 positive (It's always something!)
No Family History

Kimby
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Re:What is Inflammatory Breast Cancer? From a survivor - Friday, August 12, 2011 2:57 PM
Thanks, NN...yes, I am one and the same! Haven't been on here for awhile, but it is nice to recognize many old friends! I have made an appt with my breast surgeon...figure he's the expert. I did have cellulitis in my arm on my affected side during chemo. That developed into lymphedema. So, defiinitely worth checking in with Dr. Joe. He treated my cellulitis and lymphedema. So, will let you know on Monday what he says. In the meantime, I am faithfully taking my Keflex, which was the same thing he prescribed for the cellulitis. Good checking in with you. Is all well in your little neck of the woods?

Kimby

Kimby
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Re:What is Inflammatory Breast Cancer? From a survivor - Friday, August 12, 2011 2:58 PM
Thanks, Tricia! Will send her a PM. How are you and your feline friends these days?

Kimby

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