Last month the Inflammatory Breast Cancer Research Foundation turned 14 years old!!  During those 14 years we've seen a lot of change in the medical world and in the electronic world.  When we started in 1999, home computers were not commonplace.  While quite a few people had them, many of us were only 'on-line' at work on our lunch hour.  I got permission from my boss to use my work computer for school during lunch and before work in the morning.  It was while doing research about on-line cancer support (a class project) that I met Owen Johnson and others who were kicking around the idea of an IBC non-profit dedicated to research.

One of the first things we did, following incorporation, was put together a basic website.  Then we set up the toll-free phone line and began developing an educational brochure.  Back then most people contacted us via telephone and we used a voice mail system for the calls.  It was my responsibility to return the calls and that would often mean hours on the phone.  The fact that I was a survivor was reassuring to many callers.

We frequently update the website, provide more ways for people to contact us, and explore new ways of reaching out to share our message.  We jumped into social media with a Facebook page and a Cause page on Facebook.  Both are ways to reach more people and to let them know what we're doing within the research community.  These forums have proven very useful and we keep looking for ways to improve our reach.

In spite of the Facebook successes, we've been hesitant to join the Twitter world.  However, knowing that IBC is more common in younger women means we need a way to reach that most vulnerable population.  It's clear that  Twitter has become a life-line for many and can be used to help share our message.  I'm definitely out of my comfort zone with this technology leap but we'll learn as we go!

So, if you tweet, note the Twitter symbol in the header of this email, and tweet the newsletter to your followers, and be sure to follow @IBCResearch [IBC Research Fdn], while we navigate our way in this new territory and keep telling people, "You Don't Have to Have a Lump to Have Breast Cancer"!!  

The Inflammatory Breast Cancer Research Foundation has two groups that advise and provide oversight to the organization.  The Medical Advisory Board, comprised of clinicians and researchers in the medical community and the Board of Directors, comprised of patients and others associated with IBC in one way or another.

Over the past year we've had some changes in the Board of Directors.  We've recently welcomed Phyllis Johnson to fill a vacancy left when Gayla Little resigned from the Board.  We appreciate Gayla's many years of service to the Board and wish her well as she focuses on other interests.

We put Phyllis right to work, asking her to write her own introduction for this newsletter!  We're excited that Phyllis is willing to share her expertise with the Inflammatory Breast Cancer Research Foundation and know she'll be a wonderful addition to our Board.

"Since my diagnosis with IBC at age 50 in 1998, I have tried to spread the word that you don't have to have a lump to have breast cancer.  I was shocked that I had never heard of IBC, and that I had delayed seeing a doctor because I didn't realize my symptoms could be breast cancer.  I soon realized that more than education is necessary.  When I was diagnosed, IBC patients were often excluded from clinical trials related to other forms of breast cancer, but researchers considered the disease too uncommon for its own trials.  That is why I have always been a strong supporter of the work of IBC Research Foundation, which supports research that is helping to define differences between IBC and other types of breast cancer and to find treatments. 

In the 15 years since my diagnosis, I have worked with several types of support groups and am currently a writer at the breast cancer site at HealthCentral.com.  I have also had the privilege of watching our two children grow up, marry, and have children of their own.  My husband and I are recently retired.  I am delighted to serve on the Board at IBC Research Foundation."
--Phyllis Johnson 

In these days of biomarkers, expression pathways, and individualized therapies, it is more important than ever to have a copy of your pathology report and some basic understanding of the information it contains.  It should be emphasized that you aren't likely to find the words "inflammatory breast cancer" or "IBC" in the pathology report since IBC is a clinical diagnosis, based on the edema (swelling) and erythema (redness) of the breast.  You might see words like "dermal lymphatic invasion" or "tumor emboli", both associated with IBC, but even these terms might not be included.  The terms inflammatory breast cancer or IBC might only be found in your doctor's notes, based on the doctor's observations.

From Cancer.net, the American Society of Clinical Oncology's patient portal for cancer information is a well written page about understanding a pathology report. While not breast cancer specific, it does include information about patient, doctor and specimen identification, gross (obvious) and microscopic description, and diagnosis, questions to ask your doctor, and getting a second opinion.

BreastCancer.org provides a link to Your Guide to the Breast Cancer Pathology Report a 27 page, detailed document that can be downloaded and printed.

Some pages have a space where a patient can record information from her specific pathology report: grade of the tumor, size, margin status, lymphatic or vascular invasion, lymph node status, receptor status, and more. Included is a very helpful glossary of terms, good for those of us who "don't speak cancer." [Inflammatory Breast Cancer is briefly mentioned on page 19 and in the glossary.] 

Just in time for the October breast cancer awareness events, be sure to order yours right away!  

Whether walking or running in a community event, or simply going to the grocery store, this shirt will provide a timely opportunity to raise awareness of IBC.  If you wish, hand out a bookmark or brochure with additional information.

Bookmarks, brochures, and IBC pins are also available in the online store.

In 2001, IBCer Linda Rush sent out the following message in a very early version of this newsletter. We recently contacted Linda for permission to reprint it because her message then is just as important today.

"I encourage each and every lady to write their story. Of course the cancer part will be a part of it...but we are so much more than a "cancer story"....we have a lot of insight into life that we probably didn't have before. I would like to encourage everyone to write out their story, including the personal insight..and send it to me for posting on our website, as well as encourage you to then make copies and give it to your friends and acquaintances with an IBC Research brochure. I can tell you from experience, that your friends and acquaintances will be much more likely to read a personal letter you wrote than to sit down at the computer and look up inflammatory breast cancer just because you have it. It takes so little to make such a (potentially) big difference. To spread the word about IBC and its symptoms and its seriousness. No one can do everything, but everyone can do something. Telling our own story is an excellent example of that!"

If you would like to contribute your IBC experience, we welcome your submissions. Here are examples of IBC In Our Own Words:
http://www.ibcresearch.org/ibc-in-our-own-words/ and you can find Linda's story on that page along with many others. Contact the newsletter editor: carol.ibcrf@gmail.com and please put IBC In My Own Words in the subject line of your email.

Editor's note: Linda was diagnosed with Stage IV IBC in 1999, and says she is "doing great. I just retired this year after 28 years of teaching in the same school and enjoy doing what I need to do to keep myself healthy and in shape."