Focus on IBC

March 2012    


The newsletter from the Inflammatory Breast Cancer Research Foundation 

Upcoming Events 


March 13, 2012

Army of Women Research Results with Dr. Susan Love and Dr. Kathleen Arcaro;  

Webinar, 12:00 p.m. to 1:00 p.m. EST   

More Information


March 14, 2012

Cancer Legal Resource Center Teleconference; "Taking Time off Work & Disability Insurance"; 3:00 pm PST

More Information  


March 14, 2012

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

More Information   


March 14-17, 2012

29th Annual Miami Breast Cancer Conference; Miami, FL; 

More Information 


March 20, 2012  

Cancer Legal Resource Center Teleconference; "Health Care Reform"; 12:00 pm PST 

More Information 


Mar 31-Apr 4, 2012

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

More Information  


April 3, 2012 

Communicating Breast Cancer Genetic Risk with Your Family teleconference from Living Beyond Breast Cancer. 12:00 p.m. - 1:15 p.m. EST  

More Information  


April 17, 2012

Triple-Negative Breast Cancer: Medical Update teleconference from Living Beyond Breast Cancer. 12:00 p.m. - 1:00 p.m. EST

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 


May 5, 2012 

IBC Gathering and Dinner; Crystal City Area; details to follow.    

column title innovations
The two discussion groups (Research and A-Team) hosted by the ibcRF have been combined.

Subscribers are part of an e-mail list that discusses cancer research activities that directly or indirectly are related to the medical research, understanding, and knowledge of inflammatory breast cancer, and IBC advocacy and awareness activities efforts locally, state wide and nationally.

To learn more about this low volume list, go to this page where you can read about it and find a link to subscribe. You may note on the subscripition  page that the archives are only available to subscribers. Naturally, you can sign off, hold mail if you are away, or get mail in a digest format.
Did You Know?

In 1814 Sir Charles Bell recognized the seriousness of a breast mass presenting with pain and skin discoloration.

In 1887 Thomas Bryant observed dermal lymphatic invasion by carcinoma, suggesting the obstruction could explain the gross inflammatory appearance.

Want to read more? The IBC in history section of the web site begins with the 1800s and continues through 1999.
Young Artist in the Family?

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!

Our first angel project was in 2005.  Children's angel drawings were passed  along to pewter artist Jerry Jackson, who designed and hand-crafted an angel specifically for the Inflammatory Breast Cancer Research Foundation.  Each angel is hand-cast in pewter and signed. 

Jerry 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. 

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 or pathfinder is eligible if they are 16 or under.

Submit as many drawings as you like. 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.
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C4YW: Annual Conference for Young Women
Affected by Breast Cancer
by Ginny Mason, Executive Director

c4yw exhibit 2012Hundreds of young women, their spouses, caregivers, children, and friends filled the Hyatt Regency in New Orleans, February 24-26.  As in years past, conference attendees were greeted by a party-like atmosphere as they made their way through the registration process.  A huge bowl held Mardi Gras beads of various colors.  Pink for those diagnosed 10 yr ago or more, blue for healthcare providers, gold for caregiver, family member or friend, white diagnosis less than 1 yr; green diagnosis 1-5 yr, orange diagnosis 6-9 yr, purple for metastatic disease and red at high-risk.  Those of us with IBC talked about the need for beads in "our own" color.  

Friday morning, exhibitors were already busy setting up in Storyville Hall in preparation for the noon opening time.  Some had elaborate displays, especially those selling merchandise, while others like the Inflammatory Breast Cancer Research Foundation, had more modest areas primarily for education and information.  The exhibit area was well designed making it easy to move about the exhibits.

A "Meet-Up" session was scheduled during registration providing tables marked with signs like "healthcare providers", "caregivers", "first-timers", "inflammatory breast cancer", "metastatic disease", and others.  I was at the IBC table to talk with anyone who stopped by and met a couple IBC folks who were new to the conference.

Conference participants had a variety of workshops to choose from over the course of the weekend.  Topics included meditation, social media, reconstruction options, genetics and family risk, various medical updates, lymphedema, communicating, end of life issues, and many more including special workshops for caregivers.  Plenary sessions brought conference participants together to hear speakers on healthy living, intimacy, and a panel of patients and medical oncologists.  A welcome reception on Friday evening brought everyone to the exhibit hall to browse and enjoy snacks.  Afterward options included yoga and belly dancing!

The Inflammatory Breast Cancer Research Foundation exhibit had lots of activity and gave out nearly all the brochures and bookmarks I'd taken.  The poster showing pictures of different
presentations of IBC was a great conversation starter.  It's surprising how many people indicated they knew someone with IBC yet there were many who were not aware of breast cancer without a lump.  The parasol, showing the names of IBC survivors and pathfinders, got a lot of attention.  Seeing those names on the brightly colored satin ribbons seemed to help people realize IBC may not be as rare as they thought.  IBC survivors who have attended previous C4YW conferences stopped by to say hello and there were a number of first time attenders who shared, "I'm an IBCer too"! 
IBC dinner
Saturday night a group of IBCers, that included two spouses, went out to dinner together.  It was a great evening of sharing, laughter, and even a few tears.  It would have been a much larger group but many of the IBCers had come with other groups and had plans with them.   

A dance party on Saturday night featured a "N'awlins" Mardi Gras parade in the ballroom, followed by music and dancing.  All were encouraged to bring Mardi Gras masks, boas, and other attire for the occasion.  Fancy cupcakes, fruit, and other desserts provided much needed energy for those on the dance floor!  Of course the ever popular, "I Will Survive" brought nearly everyone to their feet and the dance floor.

Sunday morning's Zumba class got things going followed by a workshop on safe massage for caregivers.  One last round of workshops, plenary, and other short vignettes completed the conference.  Some folks stayed in town to explore New Orleans and take in the tourist sights but there were long lines waiting for taxis in front of the hotel.

Typically the Inflammatory Breast Cancer Research Foundation doesn't exhibit at conferences but since IBC is more common in younger women the Board felt it was important to have a presence at this conference.  The conference is presented by the Young Survival Coalition and Living Beyond Breast Cancer, two organizations that Inflammatory Breast Cancer Research Foundation frequently partners with on various projects.  They did an outstanding job again this year and put together a great conference.

If you're interested in checking out next year's C4YW, mark your calendar for February 22-24, 2013, and plan to head west to the Hyatt Regency Bellevue on Seattle's Eastside. 
Dr. Patricia Steeg Joins Medical Advisory Board
Pat Steeg
photo courtesy

The Inflammatory Breast Cancer Research Foundation is pleased to announce the addition of Dr. Patricia Steeg to the Medical Advisory Board. Dr. Steeg is Chief of the Women's Cancers Section, at the Center for Cancer Research, National Cancer Institute in Bethesda, MD. The Foundation's relationship with Dr. Steeg dates back to our very beginning, working with Dr. Steeg on a novel project of metastasis marker discovery. Over the years we've developed a close working relationship with Dr. Steeg and are grateful for her continued dedication to the field of breast cancer research.

For more than 20 years Dr. Steeg has been on a quest to understand the difference between tumor cells that metastasize and those that do not by exploring the differences in gene expression using cell lines. She is responsible for the identification of the first metastasis suppressor gene, Nm23. Work continues on a therapeutic to target Nm23 gene loss that occurs in some breast cancers. This is promising but challenging research. To learn more about this work go to Dr. Steeg's page on the Center for Cancer Research.

In addition to her work on metastasis suppressor genes, Dr. Steeg has played an integral role as Director of the Center of Excellence studying brain metastasis in breast cancer.  The Center of Excellence program started in 2006 and was funded by a grant through the Department of Defense Breast Cancer Research Program.  It appears that as patients receive treatment that provides longer progression free survival the incidence of brain metastasis has increased.  Dr. Steeg has referred to the brain as "a 'sanctuary site', which is a metastatic site that eludes treatment and was going to give nothing but trouble down the road."  However, she hasn't let this "trouble" stop her quest to understand the metastatic spread of breast cancer to the brain and the treatment challenges involved.

Bringing together breast cancer molecular biologists, oncologists, advocates, and scientists who specialize in the blood-brain barrier, the Center of Excellence took shape and has provided new insights with the potential to change practice in this area.  Few have studied the blood-brain barrier and thanks to this Center of Excellence team a model system has been developed that allows study of how/if drugs are able to gain access to the brain and cross this barrier.

You may remember, in 2009 the Inflammatory Breast Cancer Research Foundation became involved in this work through a grant to Diane Palmieri, PhD also at NCI and a member of this outstanding team.  Dr. Palmieri has been developing mouse models of IBC metastasis to the brain.  Through this work we'll learn if IBC metastasis to the brain differs from standard breast cancer and the models will allow molecular studies that will also aid in general understanding of IBC and metastasis.

Dr. Steeg was interviewed a few years ago by Center of Excellence advocate Musa Mayer about the brain metastasis project.  Read this excellent interview and learn more about the work on this page.

The Inflammatory Breast Cancer Research Foundation is delighted to have Dr. Steeg join our outstanding Medical Advisory Board (MAB).  Dr. Steeg joins the MAB as Dr. Douglas Schwartzentruber leaves the Board due to a job change and increasing responsibilities.  We thank Dr. Schwartzentruber for sharing his expertise and wish him well in his new position as Associate Director of Clinical Affairs at the Indiana University Melvin and Bren Cancer Center.  A surgical oncologist, Dr. Schwartzentruber is also system Medical Director for Indiana University Health's statewide cancer services.

To read more about the Medical Advisory Board, follow this link to the About Us page, then scroll down.
Soccer Team's Pink Shoelaces Raise Funds

Northfield High School Girls Soccer TeamThe Northfield, Minnesota, High School Girls' Soccer team honored a teammate's mother with an exciting fund raising event that involved sports teams at the school, and even some of the opposing teams! 

Jean Bollum passed away from Inflammatory Breast Cancer on September 10,2010.

During the Fall of 2011, the team had their second "Lace For The Cure" event.  Members of the community donated money to sponsor a fall athlete to wear pink shoelaces at their October contest. Additional activities included a silent auction, lanyards, cupcakes and shirts.Funda raised were donated to the IBC Research Foundation due to its focus on research, and that over 90% of donations go to support the mission of the foundation.

Thank you to the team, and all the community members who made this event such a terrific success, raising $13,600!
Oh Those Side Effects of Treatment!

Chemotherapy is one of those "necessary evils" for those diagnosed with inflammatory breast cancer (IBC).  With such an aggressive disease treatment is usually equally aggressive in order to gain control.  With that aggressive treatment comes a variety of side effects or adverse reactions.  Unfortunately many folks are hesitant to discuss these problems with their physician or other healthcare staff and 'suffer in silence' with these often debilitating problems.  It's important that patients, or their advocate, speak up and tell the healthcare team about side effects and seek solutions, if possible.  A dose adjustment may be needed or other interventions to deal with the problems.

One common side effect of many chemotherapies and pain medications is constipation....not a typical subject of dinner party conversation but certainly a significant problem!  There are numerous over the counter remedies on the market as well as prescription products to combat this problem.  However, some people prefer to look for alternatives and would prefer not to add yet another medication to the mix.  Friends may suggest prunes or prune juice, another will tell you to try a big glass of warm water first thing in the morning, while yet another insists that a sure fire solution is lots and lots of fiber.  Read on for more advice!

While reading an on-line discussion on this topic recently, I was reminded of a recipe I received via email in the summer of 2000.  After spending far too much time searching old emails and shuffling through dozens of files, I stumbled upon a printed copy of the famous recipe and shared it as part of the on-line discussion.  Finding and reading the recipe was a walk down memory lane.  The email came from a dear friend and IBC survivor, Norma, who had gotten the recipe from another friend in the northwest.  Haven't heard from Norma for a while but pray she remains NED (no evidence of disease) and is doing well.  Just in case any of our readers are dealing with this issue, I decided to share the recipe here.

Yakima Valley Anti-Constipation Fruit Paste

1 lb. pitted prunes
4 oz senna tea leaves (found at health food stores)
1 lb raisins
1 lb dried figs, stems removed
1 cup lemon juice

Prepare the tea using 2 1/2 cups boiling water.  Add tea leaves and steep for 5 minutes.  Strain tea to remove leaves.  Place 2 cups of tea in a large pot.  Add all of the fruit to the tea and boil the mixture for 15-20 minutes, until fruit is soft.  Remove from heat and add the lemon juice.  Allow to cool.  Use mixer or food processor to turn the mixture into a paste.  Place in containers and freeze those not being used right away.  Dosage: 1-2 Tablespoons per day.  Can be spread on toast, English muffins, rice cakes, etc.  Add some raspberry or strawberry jam for change of flavor if desired.

This is an all natural product, no preservatives or chemicals, and it tastes good!