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CATEGORIES [ SABCS, BREAST CANCER ]

Inflammatory breast cancer more common than thought

BY KATHY LATOUR | DECEMBER 12, 2013

Kathy LaTour blog image
Terry Arnold sat toward the front of Tuesday's education session on inflammatory breast cancer at the San Antonio Breast Cancer Symposium.

She was watching slides intently, specifically those from Wendy Woodward, a radiation oncologist and section chief of the breast cancer radiation oncology program at MD Anderson Cancer Center in Houston.

Arnold is Woodward's patient and credits her with her six-year survival from inflammatory breast cancer. It is often called the most deadly form of breast cancer, in part because it doesn't act like normal breast cancer. There is no tumor.

Arnold was 49 and owner of a bookstore in Houston when she became concerned about the red, swollen appearance of her breast. It took her four months of doctors visits and trying one thing after the other before she was diagnosed. Since then she has been on a mission to educate women and the medical community about inflammatory, the breast cancer that has no tumor but presents as an infection--and kills the majority of women diagnosed.

Both she and Woodward were excited to see almost 500 in attendance at this pre-conference meeting. Attendees had asked for more on inflammatory, Woodward told the audience at the beginning.

Woodward also thinks inflammatory is much more prevalent than the 5,000 or so cases reported every year.

"Physicians don't recognize it," Woodward says. "And when you go through the SEER data, you can see many are not coded correctly--or the physician thought if you call it metastatic, what difference does it make to correctly identify it if it's inflammatory. That hurts us because they think it is so few people."

Woodward says 10 percent of those women who die each year of breast cancer had inflammatory.

One of the challenges with inflammatory is the way it moves in the breast, Woodward says.

"In usual breast cancer when one cell becomes malignant and begins to divide, it clumps together and forms a tumor in most cases. With inflammatory the cells immediately begin to travel. They travel like metastatic disease, and this makes it harder to treat, because it behaves in a different way."

Arnold likens it to dropping water on a hot griddle--it spatters all over. The tumor spatters all over instead of staying where it lands. Why the griddle is hot, Woodward says, is the question researchers are trying to answer.

The result is a breast cancer that can involve the whole breast very quickly. While most breast cancer doesn't even show on the surface of the breast, inflammatory breast cancer looks like what the imagination would conjure for breast cancer. A red and swollen breast, distorted into a frightening site that may have open, boil-looking patches. When it travels to the skin on the breast and trunk, there are large red patches that look like an angry rash.

This is what Arnold wants women to know. If it's inflammatory, the breast may be warm and look like an infection. And when they do a breast self exam, there is no lump.

Read on for more about treatment, Arnold and her one-woman campaign.

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COMMENTS

Thank you for posting this story and giving attention to Inflammatory Breast Cancer.
- Posted by Terry Arnold 12/12/13 10:51 PM

Thank you so much for this informative article. I was diagnosed with Inflammatory Breast Cancer in October of 2010. After undergoing the usual "poison, slash, and burn" (chemotherapy, mastectomy, radiation) I have had no evidence of cancer for a bit over two years. I strongly believe that one reason for my successful treatment was that I found the right doctor and facility and got treated correctly right away. Far too many women are not that fortunate. Articles such as this and the tremendous work of Terry Lynn Arnold will help to further awareness and research so that more women are correctly diagnosed and treated without unnecessary delays, more doctors will recognize inflammatory breast cancer for what it is, and the dismal survival rate will improve. Thank you again and again for publishing this wonderful article.
- Posted by Marti Staton 12/13/13 12:53 AM

Thank you for doing this article. My wife passed away from this deadly disease because of the doctors inability to recognize that anything was seriously wrong and also a doctor not understanding the facts of her cancer and possibly giving the wrong treatments. We live in Norway and met Terry Arnold when we decided to go to MDA.

Again, thank you for what you have done to bring this to light
- Posted by Paul Harrington 12/13/13 1:40 PM

That you for the delivery of our message. It's not a one woman campaign; several of us told its just an infection demand every physician me educated on IBC!
Instead we are told its not profitable because so few cases are ever seen. That answer doesn't fly when you've spent 18 months in treatment and then years living with the medical costs and effects of new chronic diseases acquired from intensive treatment.
We can't stop pointing out the difference, ever! There is breast cancer without a lump.
- Posted by Jacquelyn Snider 12/13/13 10:20 PM

Thanks for the attention to IBC.

~Daughter of Stage IV IBC Patient
- Posted by Christina 12/14/13 7:12 AM

Thank you. This disease kills many quickly and is little known among the general public.
- Posted by Kathleen K Strosser 12/14/13 6:24 PM

Thank you for spreading the word about IBC.
- Posted by Kathleen K Strosser 12/14/13 6:40 PM

Thank you for giving IBC much needed attention. The education is definitely needed within the PCP community. Unfortunately my Mother-in Law is in Stage IV and the cancer had already spread to numerous parts of the body before it was properly diagnosed. It was too late to do surgery and now another attempt to try radiation and chemotherapy and a referral to infectious disease for the open wounds on her breast. Thanks again for the wonderfully written article.
- Posted by Annette Wilson 12/17/13 12:24 PM

Kudos to Cure for shining a light on IBC. When our daughter in law was dx with IBC, she had married our son only five weeks earlier. This was supposed to be the beginning of their life together, but due to misdiagnosed disease ("Its just an infection, take this antibiotic and go have a happy life! You are too young to have cancer," said her doctor.) she and her husband spend 18 months battling IBC before she succumbed to the disease. Doctors and patients need to know what IBC is and how it presents! The Morgan Welch IBC Clinic at MD Anderson in Houston, named in memory of our DIL, is a step in the right direction. So is a publication like Cure sharing the word and educating us all. Bravo! Many thanks!
- Posted by Michelle Welch 12/17/13 3:37 PM

What is the differential diagnosis of IBC versus breast lymphedema and delayed breast cellulitis?
- Posted by Robert Weiss 12/18/13 1:12 AM

Thank you for bringing attention to IBC. When I was dx in '08, I also had never heard of it. Needless to say, I have learned a lot the hard way. Recurrence in '12. It is horribly sad to hear that those in the medical field miss this at the cost of lives. I truly believe this is more common than thought. I personally know others with this. Keep up the good work spreading the word.
- Posted by Susan Niedospial 12/18/13 12:24 PM

Robert, I am going to tag this post for a doctor at MD Anderson to answer, so I am use you get the best possible information.

to Michelle, I am so honored to be a part of helping others not suffer what your daughter in law has to deal with and sadly ended her life. I know women have been saved by her story, and I know that is not a comfort but I hope some small ray of hope for a better future in women's health. peace to you.

Susan, I am sorry you have to learn the hard way, most of us do, but together we are strong and I am determined we will improve the landscape of IBC.

Paul, Marti, Kate, to have you so devoted in our corner of the cancer world means more than you could ever know. Thank you!

Christina, Hope always, and give your mom my love and know she is in my prayers, the same to you Annette, you are telling us first hand, the cruelness of this disease. Peace to you. Terry
- Posted by Terry Arnold 12/18/13 6:25 PM

Jacquelyn, I realized I missed you in my replies. You are right to say this is no a one woman battle, there are many of us, who are doing what we can to get the word out. Your passion for IBC education will matter in Oklahoma and beyond.

Hope always, Terry
- Posted by Terry Arnold 12/18/13 7:27 PM

The differentiating the diagnosis of inflammatory breast cancer from other medical conditions are not easy. In most cases, when a primary doctor sees a red warm breast, they will suspect cellulitis. If more edema, some form of benign edmematous changes will suspected. The doctors may provide antibiotics, if this does not resolve the symptoms, inflammatory breast cancer should be ruled out or suspected. This means that imaging such as mammogram and/or MRI mammography is needed. The ultimate diagnosis is to obtain a biopsy. If you do not see a mass, a skin biopsy or a random biopsy is needed. If still not clear, I would highly recommend see doctors who specialize in inflammatory breast cancer.

Naoto T. Ueno, M.D., Ph.D., F.A.C.P.
Professor of Medicine
Nylene Eckles Distinguished Professor in Breast Cancer Research
Executive Director of Morgan Welch Inflammatory Breast Cancer Research Program and Clinic
Chief, Section of Translational Breast Cancer Research
The University of Texas MD Anderson Cancer Center
1515 Holcombe, Unit 1354, Houston, Texas 77030
Phone: 713-792-8754
- Posted by Naoto T. Ueno 12/19/13 4:58 AM

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