Research into Inflammatory Breast Cancer: The 5th International IBC Conference

Patient Expert

When I was diagnosed with inflammatory breast cancer (IBC) in 1998, IBC was believed to be like any other breast cancer in its biology.  My doctors told me IBC is dangerous because it is in the lymph vessels, so it spreads easily.  Not much research was being done on IBC at the time because of its rarity.  However, I learned at the 5th International Inflammatory Breast Cancer Conference in Boston, July 9-10, 2016, that IBC is different and that doctors are now interested in studying the disease and doing clinical trials to find the best treatments.

IBC is different

For example, the age distribution of IBC departs distinctly from the typical pattern for other breast cancers.  According to Dr. Kelly Hirko of Michigan State University, IBC rates tend to rise until age 50 and then stabilize,  compared to most breast cancers which have an older population.  Although all the molecular subtypes of cancer can be found in IBC patients, a much higher percentage are HER2 enriched -- 22 per cent compared to 9 per cent for non-IBC, according to Dr. Beth Overmoyer of the Dana Farber Cancer Institute.  With advances in precision medicine, scientists are finding more ways that IBC cells seem to be different than non-IBC.  However, as yet, there is no unique marker that distinguishes all IBC cells from non-IBC.

IBC treatment and research need a multi-faceted approach

Survival rates for IBC didn’t begin to improve until doctors started a trimodal approach of chemo, surgery, and radiation.  Conference speakers showed the results of their trials in each of these areas.  Some of the research is practice-changing.  For instance, research now suggests that contrary to earlier belief, Stage IV IBC patients do benefit from mastectomy.

Presentations showcased many approaches to IBC as researchers looked at different types of drugs as well as surgical and radiologic techniques.  One of the frustrations for doctors and patients in using the new data is that so often it seems to apply to particular subsets of patients.  A study might look at a particular chemotherapy drug in premenopausal women with estrogen receptor (ER) positive cancer, so it can be hard for a postmenopausal woman who is ER negative to know if that drug might help her.

Immunotherapy is one of the new hopes for cancer treatment.  Ginny Mason, Executive Director of the IBC Research Foundation, says, “Advances in immunotherapy have been slower in breast cancer, but experts in the field still believe there are subsets of patients who will benefit. We just have to figure out who they are.”

When I asked my oncologist about some of the new molecular tests, he said that they can tell him about a tumor’s genetic profile, but all too often there is no drug available for those patients.

IBC needs its own clinical trials

As I listened to the presentations, I realized that many were addressing research in petri dishes or mice. Because IBC represents about 2.5 per cent of all breast cancer in the United States, it is comparatively rare.  While accruing enough patients for trials is difficult, research needs to move beyond the petri dish. In informal conversations with researchers, I learned they often have ideas for new treatments, but that finding drug companies interested in doing trials for drugs that might not affect a large number of people can be a problem.

Much IBC research has looked at past IBC patients at a particular hospital.  As Ginny Mason points out, “We need trials for IBC that reach beyond single institutions if we are to enroll enough patients for practice-changing data. As an example, the phase I/II ruxolitinib neoadjuvant trial will open first at Dana Farber but then open at a number of other institutions across the United States. Data from this trial will inform decisions moving forward and may prove useful for all triple negative breast cancer patients.”

Advocates make a difference

Having patient advocates on the program at a conference designed for medical professionals was an unusual feature of this meeting.  People who can help fund research were there asking questions and speaking up. We had a chance to understand the frustrations of the scientists.  They heard our concerns about toxic treatments and access to trials. One of the panelists, a Stage IV IBC patient named Kate Strosser, spoke eloquently for all patients when she told of her willingness to participate in trials, adding that the trials need to come to the patients who can’t leave their support systems to take part in trials far away from home.

The conference will help doctors make decisions about the best treatments for their patients, and the conversations among researchers and advocates will spur collaboration for future research.

See More Helpful Articles:

Six Steps to Finding a Clinical Trial

Inflammatory Breast Cancer: Understanding IBC

Immunotherapy: Helping the Body Attack Cancer


Lecture Notes from the 5th International Inflammatory Breast Cancer Conference. Harvard Medical School.  July 9-10, 2016.

Phyllis Johnson is an inflammatory breast cancer survivor who serves on the Board of Directors for the Inflammatory Breast Cancer Research Foundation, the oldest 501(3)(c) organization focused on research for IBC. She is a list monitor for an online support group at She stays current on cancer information through attendance at conferences such as the National Breast Cancer Coalition’s Project LEAD® Institute. A retired teacher, she has been writing about cancer issues at HealthCentral since 2007.