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Representatives from all continents gathered at the Inflammatory Breast Cancer World Alliance meeting, held on Dec. 9 at the CTRC-AACR San Antonio Breast Cancer Symposium. The meeting was chaired by Massimo Cristofanilli, M.D.

Clinical and pre-clinical investigators and advocates from 30 countries have joined forces to find more effective treatment of this most aggressive type of breast cancer. In rare cancers such as IBC, an international collaborative is particularly important to create a large pool of patient data to draw conclusions.

IBC prevalence has been reported in North America, much of Europe and parts of Africa. These studies have contributed to the estimates that IBC makes up 1% to 5% of breast cancers. Published data have indicated that IBC may be more prevalent among women in North Africa (20% of breast cancers) and African-Americans (up to 10% of breast cancers).

Little is known about the prevalence of IBC among other ethnicities. To address this, the alliance has established an international registry trial that links epidemiologic data and patient tissue and blood samples from multiple centers around the globe. Members of the alliance will use the banked patient samples to explore the proteomics, genomics and immunobiology of the disease.

The 2010 inflammatory breast cancer scientific conference will be held on Oct. 5-7 in Marseilles, France, immediately preceding the European Society of Medical Oncology meeting in Milan. Patrice Viens, M.D., Institut Paoli-Calmettes, Marseilles, France, World Alliance member, is the program director. The first call for abstracts will be issued in early 2010.

The Inflammatory Breast Cancer World Alliance is committed to improving outcomes of women worldwide affected by IBC.

For information on joining the Inflammatory Breast Cancer World Alliance or the 2010 conference, contact ibcp@mdanderson.org.
 

If ever there was a breast cancer in need of increased awareness, it's inflammatory breast cancer. IBC, also known as the silent killer, is a quickly spreading cancer that starts on the skin. Most of the time, there's no lump. This post is short and sweet with one take-home message -- know the signs of IBC.

Why the urgency?
Inflammatory breast cancer is a killer cancer. Caught early, treatment has a better chance. IBC is a "master metastasizer". For many women, IBC has already spread to lymph nodes and beyond by the time of diagnosis.

Signs and symptoms:

  • • Increase in breast size, increasing to 2-3 times the size of the normal breast in a matter of a week or two.
  • • Redness, rash or blotchiness of the breast. Some women report that it looks like a bug bite.
  • • Pain and/or soreness of the breast. 
  • • Lump, thickening or dimpling of the skin of the breast. 
  • • Warmth or tenderness of the breast.
  • • Lymph node swelling under the arm.
  • • Flattening of the nipple or discharge from the nipple.
 

You don't have to have all the symptoms. If you see some of these signs, contact your doctor. If your doctor prescribes a round of antibiotics and the symptoms do not resolve, don't wait. Ask for a referral to a specialist who knows inflammatory breast cancer. Help fight this silent killer by knowing the signs. Knowledge is power.

Resources
Inflammatory Breast Cancer Toolkit (PDF)
Podcast: Inflammatory breast cancer -- Know the symptoms (Mayo Clinic)

Experts say that 1 in 8 women will develop breast cancer in their lifetime. Taken as a whole, the odds for long-term survival are good -- nearly 90%. For a subset of these women, the future is not so hopeful. These are women with the most aggressive form of breast cancer, called inflammatory breast cancer (IBC).

For women with IBC, the odds are much less optimistic -- a five-year survival rate of 40%; no better than a 10-year survival rate of 25%. According to published epidemiologic data, IBC represents from 1% to 6% of breast cancers. While other breast cancers have been on the decline, IBC has been on the rise.

Where do the numbers come from?
Hospitals around the world track detailed cancer data. Major hospitals participate in national tumor registries, which in turn feed international databases. From these data repositories, valuable population-based information can be gleaned.

In the United States, our cancer registry is the National Cancer Institute (NCI) Surveillance Epidemiology and End Results (SEER) Program. This organization, with advisors from professional medical societies, determines what criteria will be used to code each type of cancer.

How reliable are the numbers?
Inflammatory breast cancer is primarily a clinical diagnosis, dependent upon the expertise of the health professional. That means that the physician differentiates between IBC and other breast cancers based on how the breast looks upon examination, how the symptoms started and how quickly it progressed.

Pathology reports based on tissue samples are able to confirm the presence of cancer cells. That's absolutely necessary to rule out other causes of the physical symptoms of IBC. Especially in IBC, getting a good specimen can be tricky. IBC is on the skin and in the lymph system and rarely forms a lump. Further complicating the pathologic diagnosis is that there's no way to tell IBC from any other type of breast cancer. That brings us back to the clinical diagnosis.

In 2007, SEER implemented a change that has the potential to adversely affect the number of IBC cases. The new rule states that inflammatory carcinoma of the breast should only be recorded in the registry if the final diagnosis of the pathology report specifically states inflammatory carcinoma. These guidelines have been adopted by all state cancer registries and the National Cancer DataBase (NCDB) of the American College of Surgeons, as well as the SEER registries. This change means many cases diagnosed after Jan. 1, 2007, will not be tagged as IBC. This may lead to false conclusions about the incidence of IBC.

Last year, data were presented at the International Inflammatory Breast Cancer Conference that examined the impact of the new SEER coding criteria on IBC cases documented in M. D. Anderson's tumor registry over the last few years. It showed that if the coding criteria were applied to the 247 IBC cases, only 30% of them would be classified as inflammatory breast cancer. This means that current statistics underestimate the incidence of IBC.

Why are numbers important?
Because of the relative rarity of inflammatory breast cancer, little emphasis has been placed on developing drugs that work specifically for IBC. Until very recently, research dollars have been hard to come by. Pharmaceutical companies, not perceiving a large market, are reluctant to fund clinical trials.

Despite the lack of resources, more and more women are becoming aware of "the breast cancer without a lump," also dubbed "the silent killer." Thanks to advocacy groups such as the Komen Foundation and the Inflammatory Breast Cancer Foundation, their voices have become loud enough to be heard. Clinics and hospitals are beginning to dedicate resources to develop treatments and look for causes.

We can't go back. We can't give up. Without a more accurate picture of the number of cases, the risk of IBC being once again relegated to the untreated and unknown looms large.

Our center, for one, will continue to classify IBC based on clinical observation. At the same time, we will continue to explore better methods of diagnosing IBC, including looking for specific characteristics of IBC cells, developing advanced imaging techniques so that our doctors can "see" the cancer and, ultimately, identifying the markers of IBC that can be detected by a simple blood test.

We have a long way to go, but we are determined to "teach it, treat it and beat it."

Until a few years ago, only a handful of physicians and nurses -- and an even smaller number of women in the community at large -- had ever heard of a rare but fast-growing type of breast cancer, inflammatory breast cancer (IBC).

The birth of the Internet provided a vehicle for mass communication unparalleled in our history. Perhaps, like me, you were the recipient of the first e-mail alert with a subject line of "the breast cancer without a lump: what every woman should know." That first alert was composed by the mother of a young woman in her 30s who was losing her battle with inflammatory breast cancer.

For decades, women have been lulled into a false sense of security when it comes to breast cancer. That is if you perform monthly self-checks and have an annual mammogram screening after age 40, you'll be able to catch breast cancer in its early stages. These are important guidelines that every woman should heed, but inflammatory breast cancer doesn't play by conventional rules. What about "the breast cancer without a lump"?

Inflammatory Breast CancerIBC is particularly aggressive. The five-year survival rate for IBC is only 40%. (The five-year survival rate for all breast cancers combined is 87%.) It occurs in relatively young women. It's not uncommon to see women in their 30s to 50s in our Inflammatory breast cancer Clinic at M. D. Anderson. The cancer has often spread to the lymph system or beyond at the time of diagnosis. That's why it's so important for every woman to know the signs.

Inflammatory breast cancer appears on the skin of the breast. There's seldom a palpable lump. It may initially look like a bug bite or a breast infection, such as mastitis. The women in our IBC Clinic tell a similar story of noticing a small, red patch that spreads in a matter of days or weeks; a swollen, hot breast with no fever; and skin that is puckered or dimpled. If you notice these signs, don't delay getting to your physician. Your doctor may prescribe a round of antibiotics. If there isn't marked improvement after one course, pursue a referral to an IBC specialist.

So what's the good news here? While breast cancer as a whole will affect one in eight women in their lifetime, IBC is relatively rare. It accounts for about 2% to 6% of breast cancers. Our patients now have clinical trials for IBC that combine standard chemotherapies and targeted therapies like lapatinib. New agents are being tested in pre-clinical settings in our laboratories with more clinical trials set to open soon.

In M. D. Anderson's Morgan Welch Inflammatory Breast Cancer Research Program and Clinic, our motto is "Teach it. Treat it. Beat it." We have assembled a team of clinicians, researchers and advocates who are passionate about raising awareness of inflammatory breast cancer, identifying tools for earlier diagnosis and new treatments that will mean better outcomes for our patients. Help us spread the word.




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