Focus on IBC

February 2012    


The newsletter from the Inflammatory Breast Cancer Research Foundation 

Upcoming Events 


Feb 21, 2012                              

Cancer Legal Issues Teleconference: Genetics and the Law; 8:00 - 9:30 pm ET.

More Information 


Feb 24-26, 2012  

C4YW/Annual Conference for Young Women Affected by Breast Cancer; Hyatt Regency, New Orleans, LA.  

More Information                            


March 1-3, 2012

5th Evidence-based Complementary/Alternative Cancer Therapies Conference; Annie Appleseed Project;

Embassy Suites Hotel, 1601 Belvedere Rd., West Palm Beach, FL.

More Information   


March 14, 2012

Fear of Recurrence: Transitioning Into Life After Treatment; Teleconference; 12:00 pm - 1:15 pm ET.

More Information 


Mar 31-Apr 4, 2012:

American Association for Cancer Research (AACR) Annual Meeting; McCormick Center, Chicago, IL.

More Information  


April 28-29, 2012 

Annual Conference for Women Living with Metastatic Breast Cancer: Enhancing Your Health and Quality of Life; Philadelphia, PA; 

More Information  


May 5-8, 2012 

National Breast Cancer Coalition Advocacy Summit; Crystal City, VA; Early registration deadline extended to Feb. 29.

More Information  

Are You Ready?

...for the Spring breast cancer walks and events? Not everything happens in October! 

Help raise awareness of Inflammatory Breast Cancer by wearing an IBC t-shirt and handing out IBC bookmarks during your walk.
front of shirt
front of both shirts

There are 2 t-shirt styles, one has IBC symptoms on the back, this one ALWAYS gets people asking for more information! The other has "you don't have to have a lump to have breast cancer" on the back.

View shirt with symptoms. (larger view of front and back)

View shirt with slogan.
(larger view of front and back)

To order shirts or bookmarks, go to the Store.
On the Go!

Ginny Mason, executive director, will represent the Inflammatory Breast Cancer Research Foundation at the Conference for Young Women Affected by Breast Cancer in New Orleans February 24-26. Last year, more than 20 IBCers were in attendance, and were encouraged to meet other survivors and swap stories.

Carol McWilliams, board member, will attend the Fifth Annual Symposium for Personalized Therapies for Breast Cancer, in Orlando on February 25. Carol lives in Orlando, and has received a complimentary registration from the conference organizers.
Did You Know?

In May 1999, Canadian IBCer Lee Smith has a recurrence of IBC and discovered that a "compassionate use" program with Herceptin had been closed, but no one seemed to know how or why that happened.

Lee worked tirelessly to get approval of Herceptin in her country. Read how The Inflammatory Breast Cancer Research Foundation, and especially Foundation president Owen Johnson, worked closely with Lee in this successful endeavor. Speed was critical, and the flurry of letters and emails to/from drug companies, the author of a book on Herceptin, and politicians, gave this struggle a successful ending.

Her story (in the In Our Own Words part of the web site) reads like a thriller, don't miss this one!
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Newsletter Archive
Remembering IBC Advocate, Susan Niebur
by Ginny Mason

Susan NeiburOn Monday, February 6, I opened my email to find a new post on my friend's blog, titled "Goodbye". I hesitated clicking on the link, fearing the worst.  Susan's previous post had been about her recent hospital stay and treatment for another bout of pneumonia. She had come home on oxygen and continued battling intense pain due to the spread of the inflammatory breast cancer in her bones. In spite of the pain, oxygen tank, and start of hospice care, Susan's humor and amazing outlook shone throughout that post. She shared snippets of a conversation with her husband upon her return home and I marveled at their ability to joke in the midst of the stress. That was Susan's final message on "Toddler Planet...The joy of life after cancer", where she shared her life and cancer journey.

The post "Goodbye" was posted by Susan's husband, Curt.  He wrote, "Susan Niebur passed away on February 6, 2012 after a lifetime of love, crusades, and strength. Over the last five years she lived with inflammatory breast cancer, a rare and aggressive form of breast cancer that presents without a lump. She chronicled her life with cancer here on her blog Toddler Planet with honesty and emotion that were even more rare and aggressive."  I struggled to get through the remainder of the post as tears streamed down my face.  It was just so very wrong and I didn't want to believe Susan's life had been cut short by this dreadful disease.  Susan touched so many lives as evidenced by the nearly 900 responses to the "Goodbye" post.

I'm one of the lucky ones who got to know Susan personally.  Had it not been for our shared diagnosis of inflammatory breast cancer (IBC) it is unlikely our paths would have crossed.  Susan  was an astrophysicist, mother of two young boys, and lived in suburban Washington, DC.  It wasn't long after Susan's diagnosis of IBC that she contacted the Inflammatory Breast Cancer Research Foundation and I was the one who returned her call.  That was the beginning of our five year friendship.  My heart ached for this young mother (34) who was enjoying life with her toddler and five month old when IBC cruelly interrupted her life.  At a time when she was savoring the joy of breastfeeding and bonding with her young son, he had to switch to bottle feedings due to potential adverse effects of chemotherapy and other medications.  During those five years of treatment and recurrence Susan remained optimistic that her disease could be controlled, and it was for a while.  From 'new mother' to 'cancer patient' and removal of both breasts.  Quite a drastic change, but Susan continued to handle it with grace and humor as evidenced by her blog posts.  Through lymphedema, removal of ovaries, and fatigue she prayed to retain the "cancer free' status she worked so hard to reach in April 2008.  Then it returned in the lymph nodes under her arm and later in her bones.  Pain became her constant companion yet she did her best to remain connected to her work at NASA, be a 'fully present' mother and wife, and stay linked to the friends who gave her strength and support.

Each time Susan contacted me with questions about treatment, clinical trials, or worrisome symptoms, her questions would challenge me and send me searching journal articles to find current literature that provided guidance.  I felt frustrated that in the midst of so much breast cancer research and information there was so little evidence based data specific to IBC.  Susan shared my passion for research and was an outspoken advocate for more quality research to aid understanding of IBC and hopefully lead to improved treatments.  She spoke about this often in her blog.

group of ibc women at nbcc
IBCers meet for dinner during NBCC Advocacy conference 2011..

Last spring Susan joined hundreds of breast cancer advocates at the National Breast Cancer Coalition's Advocacy Training Conference in Crystal City, VA.  It was a joy to see her interacting with other IBCers, blogging friends, and being energized by the conference sessions.  In spite of her pain and fatigue she was anxious to attend all the sessions and joined a group of IBCers sharing a meal together (see photo).  We all hoped she would join us again this spring when we gather in Crystal City but instead, we'll be remembering her and sharing stories of her amazing advocacy voice.

Through her blogging, Susan connected with an amazing number of people educating them about IBC, living with metastatic breast cancer, and the challenges facing women trying to balance home, family, and cancer.  Following her passing stories appeared in a variety of venues like iVillage,,, The Washington Post, the Planetary Society blog and numerous other blogs and media.  Such an outpouring of care and concern is a testament to Susan's far reaching powerful voice.  The links below will take you to a representative few of these posts.

Susan Neiber speaking at a BlogHer conference

Janice D'Arcy of the Washington Post on Susan Niebur, the Toddler Planet hero, friend and mother

Joanne Bamberger speaks of What We Learned from the Blogger Who Inspired a Virtual "Love Fest"

I'm angry, sad, frustrated, and a dozen other emotions mixed together.  Once again this disease has taken a friend and nothing I could do was able to stop it.  A part of me wants to throw up my hands in frustration and devote my energies to a problem more easily solved.....but I can't.  I hear the voices of friends like Julie, MP, Jessie, Gayle, Melody, Sandra, Stacy, Sarah......and Susan, reminding me that we must keep working for more research, education, better treatment options, and an end to IBC.

Do you have a child, grandchild, niece or nephew that likes to draw?  If so, you need to get them busy drawing and they might be the creative force behind the next Inflammatory Breast Cancer Research Foundation Angel!

You might remember reading about our first angel project, back in 2005.  At that time we collected children's angel drawings anpewter angeld passed them along to pewter artist Jerry Jackson.  Jerry, a long time friend of Executive Director Ginny Mason, offered to design and hand-craft an angel specifically for the Inflammatory Breast Cancer Research Foundation.  After reviewing dozens of whimsical angel drawings, Jerry was able to settle upon one that could be developed into a workable model for the angel.  Once a mold has been made of the design, each angel is hand-cast in pewter and signed.  It's a labor intensive process but the results are wonderful!  Jerry is an accomplished pewtersmith and sells his wares at various art shows and shops.  To see some of Jerry's pewter work go to:

The first angel was designed by Kyla Stone, niece of IBC survivor Pam Haschke (featured in last month's Focus for her work with Halos of Hope).  Out of the multitude of drawings received, Jerry felt Kyla's angel was the best suited for replication in pewter.  To transfer the design to pewter can be challenging but the 2005 angel is wonderful!  Jerry is particularly fond of working from drawings by children.  He says he likes the way children approach their drawing and aren't as stilted by convention as adults.  When Jerry approached us about doing a second angel he expressed excitement about seeing what kinds of drawings will be submitted.  Hopefully we'll be able to inundate him with angel drawings!

So round up the kids in your family.  Your children, grandchildren, nieces and nephews (grand nieces & nephews too) any close relative of an IBC survivor/pathfinder is eligible if they are 16 or under.  Submit as many drawings as you like....we need lots and lots and lots of drawings to choose from for inspiration!  Drawings should be done on plain white paper no larger than 8 1/2 x 11 inches.  They should be done in pencil or black ink (no color please).  Write the name and age of the child on the back of the drawing along with the name of and their connection to an IBC survivor or pathfinder.

Deadline is May 1, 2012. Send submissions to:
IBC Research Foundation,
P.O. Box 2805,
West Lafayette, IN  47906.