Inflammatory Breast Cancer: What Is It?

Dr. Jones,

Thanks so much for writing about this. Here's my question for you. Has IBC always been around or is it just fairly newly classified?

It seems like I've heard more about it in the last year or two than in the rest of my life combined, and am not sure why. Are the rates of it increasing? Are we just getting more sophisticated in identifying the different cancers from the very beginning? Or is it something else entirely?

Thanks in advance!

Hi Diane,

If I might venture a guess as to why you have heard more about IBC lately, it's because we (the IBC community) have pushed very hard for education into the public arena and also the medical community. Sadly women are still being misdiagnosed more often than not, so we have a lot of work yet to do.

My daughter was diagnosed at 37 in 2003 and begged me to write about Inflammatory Breast Cancer. Which I have done. I also went to our local TV channel and KOMO's Michelle Esteban did a piece called 'The Silent Killer', which went national. ABC, CNN and MSNBC picked it up and this piece is still going around the internet in emails. Remembering this piece was done in 2006 and even today is helping women realize there is more than one kind of breast cancer, and this one is "rarely" picked up by mammograms.

I lost my daughter to this disease on August 29, 2007 but have continued with my promise. You can read what our foundation has and is doing by going to www.eraseibc.com.

Science has come a long way since 2003, thankfully and the first in the world IBC clinic was opened in October of 2006 in Houston Texas, at M.D. Anderson.

I hope this answers some of your questions.

Patti Bradfield, President
The Inflammatory Breast Cancer Foundation

Patti,

Thank you so much for answering my question. I believe your mission and your promise are working -- look at all the women you have educated with crucial information. Even here on EmpowHer, we have learned to ask what KIND of breast cancer a woman has before we go on to try to answer or research questions for her.

I'm so very sorry you lost your daughter to IBC. I think it's lovely and remarkable that you are creating her legacy in this way to help others.

Thanks again for writing, and much success to the foundation. Diane

Diane,

Thank you for your kind words. And, I finally added myself here so I am not Anonymous anymore.

From your Bio it sounds like we have a bit in common.

What you are doing here is so very important, and hopefully I may jump in from time to time.

All my best. Patti

We're honored to have you chime in!! Thank you so much!!

Diane,
I wanted to chime in on this discussion and respond to your question "has IBC always been around?" This is not a new type of breast cancer. The earliest article about inflammatory breast cancer (IBC) was published in 1816 by Charles Bell. Klotz, in 1869 and Volkmann in 1875 described "carcinomatous mastitis" occurring particularly in young women during pregnancy and lactation. Finally, in 1924, Dr's Lee & Tannenbaum wrote "Inflammatory Carcinoma of the Breast". This article gives a good overview of the disease examining 28 cases.

As Patti shared, there has been increased awareness in recent years thanks to the efforts of those in the IBC advocacy community. For too long most of us did not survive and there was no voice for the disease. Because it is less common many doctors never see a case.

I am fortunate to be a 15 yr survivor of inflammatory breast cancer and use my patient experience and medical training to push for more research that will improve diagnosis and treatment of inflammatory breast cancer. I'm involved with the Inflammatory Breast Cancer Research Foundation, www.ibcresearch.org, a non-profit started in 1999 with the dual mission of facilitating research and raising awareness. It's a slow process but it is clear that more people are aware of the disease and prognosis for those diagnosed is slowly improving.

Keep asking questions!!
Ginny Mason RN, BSN
Executive Director
Inflammatory Breast Cancer Research Foundation

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.

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

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!

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