Inflammatory breast cancer (IBC) is the deadliest form of breast cancer, so every December when the San Antonio Breast Cancer Symposium (SABCS) rolls around, folks with an interest in IBC hope for breakthroughs that will turn around the mortality rate of this disease. One reason IBC is so deadly is that it is an aggressive form of breast cancer that is frequently misdiagnosed. People who have delayed going to the doctor because they didn’t know that their symptoms could be cancer and those whose symptoms were dismissed by their doctors for months believe that education is an important key to reducing the death rate.
The internet has been an important key to getting women to the doctor. Type "breast redness" into a search engine and a link to a site about IBC is likely near the top. But when a woman arrives at the doctor’s office, all too often she finds a doctor who needs more information about IBC. I still vividly remember the expression on a doctor’s face when I told her that I was an inflammatory breast cancer survivor. "But that’s always fatal," she blurted. Recently a reader in her fifties wrote to HealthCentral reporting that a doctor told her that she wasn’t likely to have IBC because it is a disease that women in their twenties and thirties get. Yet other women in that age range have been told that they can’t have IBC because they are too young. The fact is that IBC affects women of all ages although the average age of IBC patients is in the early fifties compared to an average of early sixties for other forms of breast cancer. There is still quite a bit of work to do on doctor education about IBC.
So it is good news that one of the first opportunities for the doctors, researchers, and patient advocates at SABCS to learn was an educational presentation about IBC offered the night before the official symposium began. Three noted IBC experts-- Drs. Massimo Cristofanilli, Sofia Merajver, and Wendy Woodward–shared information that will help the medical community identify and treat IBC patients. This kind of education needs to be repeated at other meetings of medical professionals, especially family practice doctors and dermatologists, who are the doctors patients often see first for breast redness, swelling, pain, rashes, dimpled skin, or itching. Ginny Mason, Executive Director of the IBC Research Foundation, has provided information for nurses, and will be doing an educational educational program for the International Lactation Consultant Association. It would be wonderful to see similar programs for every type of medical professional who is on the front line of diagnosing breast problems.
The other reason that IBC is so deadly is that scientists are still trying to understand how it differs from other forms of breast cancer and what factors make it especially aggressive and likely to metastasize. I was disappointed to find that none of the major research studies presented at SABCS were directly about IBC although the new drugs used for breast cancer in general help IBC patients too. In an IBC Research Foundation newsletter article, Ginny points out that important work at conventions like these happens between sessions too.
She says, "Most attendees take advantage of opportunities to network while attending the symposium. This was my 11th year to attend and I always meet with researchers to catch up on their work. Posters offer a chance to talk to young investigators about their work and encourage them to consider studying IBC. I spoke at length with a young woman about her vaccine work. I was able to have coffee with a few of our Medical Advisory Board members, check-in with some of our previous grant recipients, and set the stage for a multi-center clinical trial by facilitating conversation between institutions. A lot of important business takes place outside the actual meetings"
In addition to formal presentations, researchers display posters highlighting their research. Quite a few of these were about IBC. One on-going clinical trial, the Beverly 2 study, presented its progress that will encourage Her2 positive IBC patients. Dr. Beth Overmoyer of Dana Farber Cancer Institute shared information about a clinical trial she is working on, "Pre-operative Phase II trial of paclitaxel, trastuzumab and pertuzumab in IBC." IBC patients interested in clinical trials may want to ask their doctors about whether they would be candidates for either of these trials.
Work by Dr. Komal Jhaveri and his colleagues isn’t ready for your doctor’s office yet, but may pay off in the future. This work is identifying molecular pathways that affect a high proportion of IBC patients and investigating how medications might be used to block these pathways.
Each year the San Antonio Breast Cancer Symposium helps doctors share their clinical observations and learn about the latest research. I’m hoping that this year’s progress will lead to greater awareness of IBC and the need for more research.
Ginny sums it up, "If I could only choose to attend one major medical meeting a year, it would be SABCS. The conference has grown significantly but it is still possible to have one-on-one conversations with poster presenters, hear presentations by outstanding oncology professionals, and network with an amazing group of people dedicated to changing the future of breast cancer. I always come away physically exhausted from the grueling schedule but exhilarated by all the information presented."
Jhaveri, K. et al. "Hyperactivated mTOR and JAK2/STAT3 pathways: Crucial molecular drivers and potential therapeutic targets of inflammatory breast cancer (IBC)." Journal of Clinical Oncology, 2013 ASCO Annual Meeting Abstracts.
Vol 31, No 15_suppl (May 20 Supplement), 2013: 11106. Accessed Jan. 5, 2013 https://meeting.ascopubs.org/cgi/content/abstract/31/15_suppl/11106?s%20id=138682ce-f4bc-41e7-919c-98e4efc12be9
Mason, G. "News from San Antonio Breast Cancer Symposium." Focus on IBC. January 2014. Accessed Jan. 5, 2014 https://myemail.constantcontact.com/Focus-on-IBC-Newsletter-January-2014.html?soid=992060663281&aid=eLLLN28HrA4
Viens, P. et al. Three-year follow up results of a phase II study of neoadjuvant bevacizumab, chemotherapy, and trastuzumab in HER2-positive inflammatory breast cancer: BEVERLY2 study.
Phyllis Johnson is an inflammatory breast cancer (IBC) survivor diagnosed in 1998. She has written about cancer for HealthCentral since 2007. She serves on the Board of Directors for the Inflammatory Breast Cancer Research Foundation, the oldest 501(3)© organization focused on research for IBC. She is a list monitor for an online support group at www.ibcsupport.org. Phyllis attends conferences such as the National Breast Cancer Coalition’s Project LEAD® Institute. She tweets at @mrsphjohnson.