Inflammatory Breast Cancer: What Is It?

Hi Diane,
So glad to see this subject is still garnering readers and comments, as education is so important for women with questions or possible symptoms of Inflammatory Breast Cancer (IBC).

I wanted to share some interesting news with you and your readers. Our foundation has a monthly radio show dedicated to IBC, and we just had one where listeners learned about how the Department of Defense (DOD) is involved with research on this subject. The live shows are the 4th Wed of every month, and are linked from our website's front page. To listen to the last one and other podcasts all talking about IBC you can go to the below link. In August I am proud and very pleased to announce Dr. Massimo Cristofanilli (co-director of the Morgan Welch IBC Program and Clinic at MD Anderson in Houston TX) will be our guest speaker, and will be taking questions. Many of us call him "Dr. C"...and those familiar with him know how amazing this gentle caring doctor is.

So....here is the link to the podcasts and for future live shows.

The IBC Foundation Radio Show live and podcasts from previous shows
www.thruoureyes.org/ibcshow.html

Patti Bradfield, President
The Inflammatory Breast Cancer Foundation
www.eraseibc.com

For others who may be reading this and still wondering what IBC is, the symptoms, and what to do, here is some information we have on EmpowHer:

Inflammatory Breast Cancer: The Other Cancer
I am now part of Team Why Mommy

And other resources:

Mayo Clinic IBC: Definition
IBC Research Foundation Symptoms

Hi
I am a nine year IBC survivor this month . I knew Penny when she lived here in Columbus and we were dignosed within a few years of each other. I am doing great . I initially went through 8 rounds of chemo, mastectomy, followed by radiation. I am currently on Herceptin every three weeks, have been on Aromasin for several years now and just started once a month Boneva.

My most recent scans came back all clear. I had a small spot of cancer found on my right femur back in March. Surgery was done to place an 11" steel rod in the femur bone to strenghthen it followed by ten radiations to that bone. The scans showed the cancer is gone.

Every day is a blessing. I was diagnosed with IBC at age 41 at my first mammogram. Very scary stuff but I am now 50 and here to tell others about it!

Suzie Matthews
Upper Arlington, Ohio

current patient of Dr Chris Rhoades at The Zangmeister Cancer Center in Columbus, Ohio

I'm IBC survivor since March 2008. I started an IBC Hall of Survivors of 3+ year survivors to encourage others. I just put first name, years since diagnosis & state. So ladies, may I add you to my Hall?
Ginny - 15 years - ??state
Penny - 7 years - Idaho
?? - 13 years - ??state
Please fill in the ?? and any others out there, please let's hear from you. Thanks, Bon

I am a 13 year survivor of IBC -missed by the doctors treating me for infection until I researched the internet and found info. My daughter is now facing unsure diagnosis.

I am interested in Thermography. When first introduced, it was not used properly, and as a result is not a recognized diagnostic tool. When used by someone who knows how to read the results, it has been shown to detect IBC. Do you have any experience with thermography? Why is this not used in conjunction with the other diagnostic tools?

Penny is amazing, and I'm so glad I had a chance to meet her in Texas when the first IBC clinic was opened in 2006.
Congrats Penny....7 years.....whoopee.

Her story really proves you have to be your own best advocate.

Patti Bradfield

Penny, I LOVE your story. Wow. Wow.

So if I read what you wrote correctly, one day your breast appeared normal, the next day it appeared quite red?

Sounds like you had a super, super primary care physician there. But you had a lot of things go right here, and for others who are reading this, I want to point them out:

1. Penny saw a symptom she didn't understand and called her doctor. No waiting to see if it will go away on its own, no denial, no "I don't want to bother the doctor." She just called.

2. Her doctor was a good one. Clearly there was a relationship here already. If you don't like your primary care physician, change. You need someone whom you feel comfortable with and have confidence in; someone who is pro-active about your health.

3. Despite the insurance company's caution, Penny got the mammogram and ultrasound anyway. At this point, some women would have decided they couldn't have the tests.

4. Penny's daughter did her research. It sounds like she didn't go overboard -- something that can be easy to do on the internet -- but she found helpful, practical information. She told that helpful, practical information to her mother.

5. When the doctor said all was well, Penny, not satisfied because something still didn't seem right, repeated the helpful, practical information to the doctor. The doctor did something about it.

6. When a biopsy was scheduled, but not soon, Penny asked, talked and pushed until she got an appointment in the next two days.

7. She's still here, living and thriving, 7 years later. Yay!

Penny, I would sure love to know more of your story. IBC would be less frightening to women if we hear more about proactive patients like yourself. Would love to know about your surgeries, chemo, radiation, all of it, especially the things that you know made a difference, like the above.

Thanks so much for writing. You rock!

Well, I will chime in also.

I am a seven year survivor of Inflammatory Breast Cancer. Here is my story.

I got out of the shower and noticed a very red breast in the mirror, called my primary care physician in Cols. OH. who said to come in the next day. He said I probably had mastitis and put me on antibiotics, but mentioned a very rare breast cancer, IBC, and said he wanted to send me to a "breast specialist", the following day. The breast specialist was an oncologist, who said to continue on the antibiotics, and since I was flying to Florida the next day to drive my mother and her care giver back, he would schedule a mammogram and ultrasound for me five days later when I was due back in town. (The insurance company said I would have to pay for them if no cancer was found, since it had not been a year since my last mammogram).

My daughter drove up from southern Florida to see me and asked to see my breast. “I've had mastitis, that is not mastitis”, she said. She also told me she had looked at IBC on the internet, and I was not to look it up, but let her do the research, it was “scary”.

When she returned home she got on the internet and looked for more information. She somehow discovered that during an ultrasound the radiologist should look for “thick skin”.

After the mammogram and ultrasound, the Dr. came out smiling and said I was fine, absolutely no cancer.

I asked him if he was looking for IBC? He looked at the referral from the oncologist, and said there was no mention of IBC, even though that was why my primary care physician had sent me there…

He said he had never seen IBC. I told him my daughter had gotten on a website, and it said he should look for “thick skin”. He said “let me do another ultra sound”. He found thick skin in three places and told me I needed a biopsy.

I called the oncologist when I left his office and said I needed a biopsy, and the nurse said they could do it in a week. I said I could be there the next morning when they opened, and stay ‘til they left. I said I would do that for two days and if they could not fit me in by then, I would find another oncologist. She called me back and said they would see me at 10:00 the next morning.

The rest is history.
Penny, now from Boise, ID

Ginny,

I'm honored to have you along for the ride, too. I'd love to encourage you to sign up on the site like Patti did and respond to posts -- mine or others' -- whenever you have something to contribute.

For so long, the "standard" things people know about breast cancer included the sense that all breast cancers were similar, and that most of them happened to older women. It's good that we are now able to help people start separating information into the different kinds of cancers, the different treatments, and the fact that they can affect women who are much younger.

I think that IBC scares some women away from knowledge, since it seems more virulent and aggressive, and doesn't necessarily follow the patterns we learned in the past. Having women like you and Patti to spread the word can only help fight that fear.