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 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
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