What is Inflammatory Breast Cancer? From a survivor

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Ruthie1956
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Re:What is Inflammatory Breast Cancer? From a survivor - Tuesday, June 09, 2009 1:06 PM
Thanks Patti, for reposting the link to ibcsupport.org.  I try and sneak that in as much as I can when I respond to folks.  It IS amazing how that video still informs and instructs.  I have people send a link to me all the time stating "Have you seen this?"  And I have posted it on facebook too as there are ibcsupport folks there as well. 

Unfortunately, there are more women and men diagnosed every day with IBC.  I think that the advocacy group and eraseibc.com have had a big impact on this.  The information you provide people helps to get them on the right road to treatment and ultimately help save lives.

Thanks for stopping in!
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)

WarriorDawn
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Re:What is Inflammatory Breast Cancer? From a survivor - Saturday, June 27, 2009 11:18 PM
Hi, I'm also an IBC survivor. Your info is very accurate. Luckily, they knew right away from my mammogram that is was IBC. I was diagnosed February 2008 and everything was set up for treatment very quickly. Luckily, I live outside of Houston. Houston has one of the best medical centers in the world. I ended up with a right mastectomy. All treatments (chemo, surgery, radiation, Herceptin) went smoothly. Now, I'm dealing with brain cancer. I had surgery last week and am doing well. I will have to have 2 weeks of radiation after I'm healed from the surgery. I'll tell you what, I wasn't vigilant enough. I don't remember reading that the IBC could metastisize in the brain. Now, that I'm dealing with it and researching it, it's not uncommon. Well, from now on I will definitely be a warrior. I feel like I had become complacent and that CANCER wouldn't happen again. Now I know better. Thanks for listening!
IBC February 2008
HER2 positive
1 year of Herceptin
Chemo & Radiation March-October 2008
Right Mastectomy August 2008
Diagnosed & Brain Surgery June 2009
Set to start radiation on brain July 2009

christinegelling
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Re:What is Inflammatory Breast Cancer? From a survivor - Tuesday, August 11, 2009 7:11 AM
Dawn, I wanted to respond to somethig you said about being complacent with the first diagnosis. That is exactly how I am. I was diagnosed in March 2008 with bilateral breast cancer. Went through one year of treatments, and although the tumor in my left breast was 5 cm and I knew that there could be mets, I still felt sort of complacent. Maybe just confident, not completely, but sort of. Quite optomistic. Do you think this is a defense or something? Anyhow it turns out I have a cancerous nodule in my left lung, which oddly is a met from kidney cancer I had 13 years ago. I am going to have it out Thursday. I send you and your small children my best. I was wondering do you still have the same feeling? I am asking because I wonder about myself, will I have the same feeling? In a way it is a good feeling to have because you are less scared. If you have time, let me know what you think. Sorry if this sounds a little incoherent. Writing about feelings like this is a little complicated. Chris

Ruthie1956
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Re:What is Inflammatory Breast Cancer? From a survivor - Thursday, August 20, 2009 10:47 AM
Hi Chris.  Your feelings are normal.  Confidence or complacence, its still normal.  I have finally begun to get this feeling after 3 years post diagnosis.  I'm glad you have this already! :)

IBC scares the hell out of me even though I have been NED and continue so.  Every little tweak and odd thing happening sends me right back to the first day on feelings.  I know from others that this will pass...I wonder.  Mine is complicated (aren't we all?) by the Rheumatoid arthritis I developed, probably as a result of the steroids during chemo.  RA is the body mistaking joints for foriegn bodies and attacks them.    So twinges may be that or it may be the IBC....arrrggggh!

I have been away on vacation so I just wanted everyone here to know I am still interested in this thread and check it from time to time... take care!
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)

rosehenry
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Re:What is Inflammatory Breast Cancer? From a survivor - Friday, February 12, 2010 7:28 AM
Is it possible to still have IBC if a punch biopsy comes back negative?  I have a rash (2"wide - goes from center of my chest to my nipple area)  This rash comes and goes, but always seems to be there to some degree.  I can't tell if I have orange peel skin due to stretch marks on my breast. I have noticed the center of my nipple dips in at times. I had lumpectory/chemo/radiation 2 years ago on the same breast as the rash apears. 
Thanks for your info.
RosePetal

ElaineQW
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Re:What is Inflammatory Breast Cancer? From a survivor - Friday, February 12, 2010 8:35 AM
Hi everyone,

I don't mean to change the theme of this thread, but I've noticed that there is often a confusion between Infammatory and Invasive breast cancer.  I went online and am posting a description of the others here. 

[font="arial, verdana, helvetica, sans-serif; font-size: 13px; "] What is invasive breast cancer? Invasive breast cancer is cancer that spreads outside the membrane of the lobule or duct into the breast tissue. The cancer can then spread into the lymph nodes in the armpit or beyond to the brain, bones, liver, or lungs.
When breast cancer cells are found in other parts of the body, the cancer is called metastatic breast cancer.
There are several types of invasive breast cancer, including:
Invasiveductal carcinoma (IDC). With IDC, cancer cells start in a milk duct, break through the duct walls, and then invade fatty breast tissue. IDC can remain localized, which means it stays near the site where the tumor originated. Or the cancer cells may enter the bloodstream or lymphatic system and metastasize -- spread -- anywhere in the body. Invasive ductal carcinoma is the most common type of invasive breast cancer. It accounts for 80% of invasive cancers. Ductal carcinoma in situ (DCIS). This cancer is ductal carcinoma in its earliest stage -- stage 0. In situ means the breast cancer hasn't spread beyond its point of origin. That means the cancer is confined to the milk ducts and has not invaded nearby breast tissue. If it is left untreated, though, it can become invasive cancer. Infiltrating (invasive) lobular carcinoma (ILC). This cancer accounts for about 10% to 15% of invasive breast cancers. ILC starts in the lobules or milk glands. It then spreads in a way similar to IDC. With ILC, most women feel a mass or thickening instead of a breast lump.

Hug,
Elaine

 A person's greatness is the power to stand alone;to be able to make her own choice; in action,to write anew her own law; to choose her own sacrifices; run her own dangers; win her own freedom; venture her own destruction; to choose her own happiness 
 






mrsnjband
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Re:What is Inflammatory Breast Cancer? From a survivor - Monday, April 26, 2010 11:28 AM
rosehenry


Is it possible to still have IBC if a punch biopsy comes back negative?  I have a rash (2"wide - goes from center of my chest to my nipple area)  This rash comes and goes, but always seems to be there to some degree.  I can't tell if I have orange peel skin due to stretch marks on my breast. I have noticed the center of my nipple dips in at times. I had lumpectory/chemo/radiation 2 years ago on the same breast as the rash apears. 
Thanks for your info.


Hi, I'm new here but not new to IBC.  My first question to you is where did they do the punch biopsy?  Did they do it in the rash area?  Because my first biospy to the rash area was negative.  I had a Breast MRI to locate the cancer, then they did a biospy to the area where they knew the cancer was and it came back postive.  In my humble opinion is that it could be possible, so I would discuss this with your doctor. 
~Norma June~ IBC Survivor~ Stage 3b
Nov 10, 2007 First Sympton of IBC, itching & peau d'orange 
Dec, 2007 First Punch Biospy to skin, negative
Jan, 2008, MRI, 3mm mass close to chest wall
Jan, 2008, Second Needle Biospy to cancer site, positive
Jan 10, 2008 Diagnosis of IBC, IDC Right, ER-PR-, Her2- 
4 rounds AC, 8 rounds Taxol, 3 1/2 rounds Taxotere
July 10, 2008 BLM-Simple Left, Mod-Rad Right, CND
7 weeks Rads
Nov 10, 2008 Caner Free!!!!

mrsnjband
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Re:What is Inflammatory Breast Cancer? From a survivor - Wednesday, April 28, 2010 8:31 PM

 
http://www.eraseibc.com/
 
I just wanted to add that I had seen either this video or another one simalar to it before I had my IBC symptoms.  I truely believe having seen that video saved my life.  I knew as soon as I got the rash that had IBC.  So I that God for that video!

<message edited by mrsnjband on Wednesday, April 28, 2010 8:33 PM>
~Norma June~ IBC Survivor~ Stage 3b
Nov 10, 2007 First Sympton of IBC, itching & peau d'orange 
Dec, 2007 First Punch Biospy to skin, negative
Jan, 2008, MRI, 3mm mass close to chest wall
Jan, 2008, Second Needle Biospy to cancer site, positive
Jan 10, 2008 Diagnosis of IBC, IDC Right, ER-PR-, Her2- 
4 rounds AC, 8 rounds Taxol, 3 1/2 rounds Taxotere
July 10, 2008 BLM-Simple Left, Mod-Rad Right, CND
7 weeks Rads
Nov 10, 2008 Caner Free!!!!

trishah
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Re:What is Inflammatory Breast Cancer? From a survivor - Sunday, May 02, 2010 6:58 PM
Hello All, My name is Trish and I have not been diagnosed with ibc but have a question if you would not mind answering.  I have had pain in my left breast since about the second week in march that has not gone away.  I had a mammogram and ultrasound done about two days after the breast pain started because at my annual exam the doctor found a "thickening".  Absolutely nothing came up on the mammogram and ultrasound. and I have been to a breast surgeon who said she "felt no lumps to be concerned about" and a nurse practioner at her office who said the same.  Well my breast is swollen to and did so about the same time the pain started.  I don't have any rashes and that is why the breast surgeon says that it is probably not ibc and that the "odds are in my favor" and to just follow up with my pcp in a few weeks.  well the week after i saw the breast surgeon I went to my pcp and she said she would feel better with a breat mri to rule it out since i have 5 young boys and it would put everyone at ease.  well the insurance company is denying the mri saying it is not medically necessary and i had to go back to the breast surgeon.  they said if she would okay it then they would look at the request again.  well she requested it and i got the official denial letter.  I am going to appeal it but it is taking too long.  I asked the breast surgeon's office if i could just get it done before they approve it and they told me that it needs to be preapproved.  they were supposed to do the appeal and I called the office thinking it was done last week and was told the doctor did not do it and went on vacation and won't be back to the end of next week.  I scheduled an appointment with my pcp for wed and i just don't know what to do.... I am feeling this pain and I feel that the only one that is taking me serious is the pcp.  I don't know where to go to get help.   The breast surgeon said she cannot do a punch biopsy because there is no lump or rash....  I am really ready to cry because I am tired of hearing "don't worry the odds are on your side" but no one can tell me why my breast is swollen and I am in pain.  I asked the breast surgeon what it could be and she looked in my eye and said "I have absolutely no idea. "  (I was on a round of antibiotics that did nothing but make me nausious)

I was wondering if anyone knew if you could do a punch biopsy without a rash (they said they would not know where to biopsy without a rash)  and if a mri would pick up something if it was there.

I am really starting to feel crazy because nobody else is worried about this except me and my husband....  =-(
I thank you for taking the time of reading this.... <3
Trish
 

barbwire930
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Re:What is Inflammatory Breast Cancer? From a survivor - Sunday, May 16, 2010 1:24 AM
hi i was diagnosed with ibc in february i have the last of my AC tuesday and start taxotere. im scared can someone tell me their experiences. also i am looking for a survivor in the southern california area i can talk to. i am in huntington beach california

barbwire930
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Re:What is Inflammatory Breast Cancer? From a survivor - Sunday, May 16, 2010 1:28 AM
i had the same symptoms fortunately i had doctors who suspected IBC and did a biopys right away. i am not sure what to tell you other than keep pushing the doctors. this is a serious thing. i will pray for you
 
barbara

ibcmets
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Re:What is Inflammatory Breast Cancer? From a survivor - Sunday, May 16, 2010 1:48 AM
Trish,
I hope by now you have had someone check this out further.  Typical symptoms of ibc present redness that won't go away and your breast will be a lot warmer, may itch & have a dimpling effect of the skin.  My breast was also much harder than the other one--you could defintely tell a thickening of the skin about 6cm long X 3cm wide.  I also had a lump which is not normal but did help escalate things quickly.  Good Luck in getting this taken care of.
 
Hugs,
Terri
6/09 - diagnosed ibc inflammatory with bone metastasis
           stage IV - ER/PR +, Her2-
1/10 - 7th chemo, 3 with TAC, 4 TC
2/10- Last TC chemo
monthly - Zometa infusion  & daily Femara

wigeon
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Re:What is Inflammatory Breast Cancer? From a survivor - Sunday, May 16, 2010 8:18 PM
Hello, I am new to this forum. I have just been diagnosed with IBC . I had a core biopsy last thursday the radiologist said your breast feels warm and a rash. To be truthful I never noticed I had I was having pain in my breast like a pulled muscle so my pcp sent me for mamogram ultrasound that is when the radiologist siaid get biopsy so week later did this my first appt the dr. said my lymph nodes looked good. The radiologst who did my biopsy is the one who mentioned IBC on my form for my pcp. I saw my pcp friday as I have had a horrible cough she said it was bronchitis and has me on antibiotic and cough med. I arrived home after my appt. late afternoon Friday 14th2010 and my pcp called and said "I know you spoke with the Pathologist she said she spoke with you." I never spoke to a patholigist and told her she said that strange anyway she said your test is Breast Cancer I assume it is IBC she said I want to get you areferel to a surgeon. I said ok as I am in shock she said I don't know much about this cancer I will need to read up on this (very frustrating). I have no idea what stage my cancer is in I am at a loss. I live in Northern Va Fairfax area does anyone have suggestions on good Dr. I am still coughing with what feels like a pulled muscle but worried it is on same side as my IBC. I am glad to have people to speak too here and who may help.

ibcmets
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Re:What is Inflammatory Breast Cancer? From a survivor - Monday, May 17, 2010 2:52 PM
Barb,
I was on TAC (taxotere, cytoxin & adriamyacin) for 8 months-once every 3 weeks.  I did fine.  No pain, just extremely fatigued about 1 or 2 days after chemo.  I had nuelasta shots to bring up my blood counts, but I was still fatigued about 2 weeks after chemo.  I had 1 good week every month.  I was on steroid medication for 3 days during chemo.  This will keep you energetic and you may have a difficult time sleeping.  During chemo & still now; I take Melatonin at night to help me relax enough to sleep.  I didn't want to take ambien or other sleeping pills because I did not want to feel sleepy the next day.  Melatonin is natural and available over the counter.  You probably will not be very hungry during chemo.  Light stuff is good--soup and crackers, yogurt,pudding. Sleep or rest a lot.  I'm stage IV so I did not do radiation or surgery.
Good news is after 10 months, scans were clean, no more tumor or bone mets or inflamed lymph nodes.  I'm now on Femara daily & Zometa monthly to keep the bone mets away.  I've regained my energy and deal with bone & joint pain from the Femara---but no cancer for now.   I get rescanned every 3 months.
Good Luck with your treatments.
Terri
6/09 - diagnosed ibc inflammatory with bone metastasis
           stage IV - ER/PR +, Her2-
1/10 - 7th chemo, 3 with TAC, 4 TC
2/10- Last TC chemo
monthly - Zometa infusion  & daily Femara

Ruth Coates
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Re:What is Inflammatory Breast Cancer? From a survivor - Monday, June 21, 2010 7:00 PM
HI, I know its been awhile.  I have been away for a long time, mainly caught up in Facebook games, and dealing with my own health issues related to RA not cancer thank God!

But I am still here after a 2006 diagnosis and completing treatment in 2007, so i guess i have passed my 3rd and 4th year of survivorship. Whew they told me I may not make it to this year...ha! fooled them!  Statistics aren't always right!

So if you have questions and all there are others like me here who lurk on the other cancers section here.  Ask away.  We'll try and help!

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

AlaskaAngel
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Re:What is Inflammatory Breast Cancer? From a survivor - Friday, June 25, 2010 2:46 PM
Hi Ruth, your posts are encouraging so thank you. I do not have IBC but am a NED IDC/DCIS/HER2 pos survivor of 8 years. My older sister at age 64 has been a NED suvivor of 8 years and has just been dx'd this time with right IBC (same breast as before), 2 LN in one axilla, 1 LN in the other, 1 possible LN near the pectoral, stable nodules in one lobe, and after A/C x 4 and post right mast, looking at either Taxol or taxotere x 4, HR+ so followed with some AI. She is pretty scared of the neuropathic side effects and is trying to figure out whether to do Taxol or taxotere, and how to manage them... and still trying to get her head around having to do more chemo.  I don't have her path reports from either dx yet. First time around all she had was rads and tamoxifen. Mine was bigger so I've had CAFx6 and tamoxifen. Thanks for any help.

Ruth Coates
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Re:What is Inflammatory Breast Cancer? From a survivor - Saturday, June 26, 2010 2:39 PM
I believe that my doctor told me that taxotere has less side effects and any SE were no long lasting.  During my 4 taxotere my skin peeled from my hands and feet and my fingers and toes had numbness and tingling (like the were asleep).  All of that is gone now, 3 yrs post.

They also say though this is anecdotal, that if you are in a cool room, that fingers and toes have less problems, by keeping them cool during infusion, and to drink ice water or cold drinks during to save your tastebuds.  I did this and my digits were ok but my tastebuds still thought everything was metallic cardboard.  Thats better now except I still am not fond of  chocolate (this from a chocoholic).

The last thing is the fatigue.  TAxotere makes you very tired, so if you can, nap as often as you can.  It takes a lot out of you this taxotere stuff, but it does the trick.  I am assuming they are only giving it to you every three weeks (its that hard).  But consider this.  If its hard on YOU, think how fatal it is to this stubborn cancer, since it doesn't have the capacity to recover like your normal cells do. 

Good luck to your sister, and I hope that this helps.  One good thing as I found my hair began growing back even during the taxotere...
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

Tricia Keegan
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Re:What is Inflammatory Breast Cancer? From a survivor - Saturday, June 26, 2010 3:49 PM
Hi AA,

I think we know each other from another board:) ???

I did taxol but it's known taxotere is more tolerable due in part to the way it's mixed.   I had some neuropathy on weekly taxol, but found Lyrica was helpful as a short term med.

My best wishes to your sister and hope she does well:)
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

AlaskaAngel
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Re:What is Inflammatory Breast Cancer? From a survivor - Sunday, June 27, 2010 11:21 AM
Hi Tricia - Yes, I'm the same AA, glad to see you! My sister and I were never treated with a taxane originally, and I'm nervous about the issues regarding Cremaphor. Her onc currently is recommending Taxol and I'd like to understand why. I live very far away from her. She isn't breast-cancer knowledgeable, as her preference is not to know much about it. Her husband is bright, but lost about the info. She has no other chronic diseases but is obese, and I wonder if there is any information as to which of the 2 taxanes works best for the obese patient. It is helpful to know that you have been through it personally. Do you have any remaining side effects?
 
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:What is Inflammatory Breast Cancer? From a survivor - Wednesday, June 30, 2010 4:55 AM
Hi AA,

No remaining side effects at all thankfully, it took about six weeks for it to get out of my system and I slowly felt more like myself and regained my stamina.

It's kind of you to research for her, you may get more info by checking the main ibc sites , I think one is www.eraseibc.com but if you google it I'm sure you'll get many more.   The taxol too comes up with a lot of info if you google that but I don't know if weight is mentioned other than perhaps needing a larger dosage.
I can tell you that the majority of people find taxol or any of the taxane's far easier and more tolerable than a/c.

Maybe take a look also on the chemo forum here ??
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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