Focus on IBC

December 2013    

 

The newsletter from the Inflammatory Breast Cancer Research Foundation  

Upcoming Events 


December 6-9, 2013
The Science of Cancer Health Disparities; AACR Special Conference; Sheraton Atlanta Hotel, Atlanta, GA.
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December 10-14, 2013
San Antonio Breast Cancer Symposium; Henry B. Gonzalez Convention Center, San Antonio, TX.
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December 19, 2013
Update From the San Antonio Breast Cancer Symposium; Noon - 1 p.m.; free webinar.
More Information

February 21-23, 2014
C4YW Conference for Young Women Affected by Breast Cancer; Hilton Orlando Lake Buena Vista, Orlando, FL.
More Information

March 6-8, 2014
Evidence-based Complementary & Alternative Cancer Therapies conference (Annie Appleseed Project); Embassy Suites, 1601 Belvedere Road, West Palm Beach, FL.
More Information 

ibcRF Selected for NCCN Patient Resource!

The National Comprehensive Cancer Network� (NCCN�) just announced the availability of the NCCN Patient and Caregiver Resources section of NCCN.org.

The IBC Research Foundation was selected by NCCN to be included the
comprehensive directory of Patient Advocacy and Support Groups. Not only will patients and their caregivers have the opportunity to review this directory, but internal NCCN representatives use this directory when speaking with patients directly about needs they may encounter.

Go to link provided above, then click on Disease Specific and scroll down a bit to find us under Breast Cancer.
Newly Published IBC Research

New additions to the IBC Research 2013 page (in addition to the 13 articles previously noted on that page) are listed below. If free full text of an article is provided, it is linked on that page. If the abstract only is provided, there is a link to the record in the PubMed database because some articles eventually provide free full text.

Saigal, K., et al. (2013).
Risk factors for locoregional failure in patients with inflammatory breast cancer treated with trimodality therapy.
Clinical Breast Cancer, 13(5), 335-43.

Fernandez, SV., et al. (2013).
Inflammatory breast cancer (IBC): clues for targeted therapies. Breast Cancer Research and Treatment, 140(1), 23-33.

Van Laere, SJ., et al. (2013).
Uncovering the molecular secrets of inflammatory breast cancer biology: an integrated analysis of three distinct affymetrix gene expression datasets. Clinical Cancer Research, 19(17), 4685-96.

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ABC-2; Lisbon, Portugal
by Ginny Mason, RN, BSN....Executive Director


In the fall of 2011 "the Advanced Breast Cancer First International Consensus Conference (ABC1), took place in Lisbon, Portugal.  It brought together 800 participants from 64 countries worldwide to develop a set of consensus guidelines for the management of advanced breast cancer (ABC).  Participants, including health professionals, patient advocates and journalists, agreed to a series of guidelines, which are based on the most up-to-date evidence and can be used to guide treatment decision making in diverse healthcare settings globally." (from ABC website)

Fast forward to November 2013 and more than 1000 participants (68 advocates) came to Lisbon from 71 countries to review the guidelines developed in 2011 and make suggestions for updates and additions.  The committee opted to add inflammatory breast cancer (IBC) and locally advanced breast cancer (LABC) to the guidelines this year so sessions devoted to these topics were added to the program and new guidelines included for discussion.

The program included poster presentations and participants were invited to submit abstracts for poster consideration.  The Inflammatory Breast Cancer Research Foundation, represented by Ginny Mason, had the good fortune to be chosen for a poster.  This provided an opportunity to share about the work of the Foundation as well as educate participants about IBC.

It was particularly exciting to hear from various international experts as they presented and referenced information to be included in the guidelines on the medical and surgical management of IBC.  The program included a wide variety of advanced breast cancer topics.  At different times during the conference there were advocate specific sessions.  The international group of advocates reviewed the guidelines from a patient perspective and on the final morning a representative presented, on behalf of the group, the suggestions garnered from discussion in the advocate sessions.

The program included a wide variety of advanced breast cancer topics.  New this year, various international experts presented and referenced information to be included in the guidelines on the medical and surgical management of IBC.  The 40 member consensus panel, responsible for the guidelines, included George Sledge Jr, MD, member of the IBC Research Foundation Medical Advisory Board.  A final document prepared from the ABC-2 panel discussion/voting will be published simultaneously in the journals Annals of Oncology and The Breast.  The guidelines developed by ABC1 are available at: http://www.abc-lisbon.org by clicking on downloads on the left-side menu.  The full-text article is available free of charge. 


The international group of advocates met in specific sessions to review the guidelines from a patient perspective at various times during the conference.  On the final morning a representative presented the suggestions from advocate sessions.  Many of the advocates, like myself, were able to attend thanks to travel scholarships.  This assistance shows the commitment the organizers have made to include a wide variety of patient advocates in the conference.

Given the number of IBC patients metastatic at diagnosis or who develop metastases at some point, it is appropriate that IBC be included in this conference focused on ABC.  It was my privilege to provide a voice for the IBC community at this important conference and I hope to represent the Inflammatory Breast Cancer Research Foundation and the broader IBC community at ABC3 in 2015.

[Editor's note: view the complete poster in addition to text, this poster contains images of IBC]  

The Health of Women Study (HOW) & Collateral Damage


The Inflammatory Breast Cancer Research Foundation is proud to announce our collaboration with the Dr. Susan Love Research Foundation, Young Survival Coalition, Susan G. Komen, Latinas Contra Cancer, Living Beyond Breast Cancer, SHARE, the National Breast Cancer Coalition and Metaplastic Breast Cancer groups in a new initiative of the Health of Women Study (HOW).

The Health of Women Study (HOW) has been collecting data on women with and without breast cancer for some time now and has close to 50,000 participants. This new initiative is directed specifically at those who have been diagnosed with breast cancer. When you visit questionthecure.org  you'll be invited to share about the various side effects, or collateral damage, you've experienced as a result of your treatment.  You'll find a list of common side effects as well as a box where you can enter things that are not listed.  There is also a space to share where you learned about the study.  We hope you'll list the Inflammatory Breast Cancer Research Foundation so they know we're getting the word out to our community.

These side effects answers and comments are important as a questionnaire is being developed to capture the 'real life' experience of those treated for breast cancer and will be a part of the HOW Study.  IBC patients receive very aggressive treatment and it's important that the side effects/collateral damage be documented in this study.  As patients live longer and longer following extensive treatment these early and late repercussions could have significant impact.  Unfortunately this aspect of treatment is seldom captured beyond clinical trials.

If you're not already signed-up for the HOW Study, now's the time.  If you've already signed-up you can still visit the questionthecure.org website and complete the collateral damage survey.  Let's make sure IBC is well represented in this study so we can all learn more and engage the research community for more IBC specific studies. 

GivingTuesday.....December 3, 2013


It's common practice for non-profit organizations to use a December newsletter to encourage end of the year donations. People often wait till the end of the year to do charitable giving, and the Inflammatory Breast Cancer Research Foundation hopes to be the beneficiary of some of those donations. Without your donations we can't continue to fund research grants, keep the website and toll-free phone line operating, and remain a powerful patient voice in the breast cancer research community.

On December 3, the Inflammatory Breast Cancer Research Foundation is part of a call to action that will change the calendar and help make history.  We are celebrating a day dedicated to giving---when charities, families, business, community centers, students, retailers and more will all come together for #GivingTuesday--a movement to celebrate giving and encourage more, better and smarter giving during the Holiday Season.

Last year the Tuesday following Thanksgiving, Black Friday, and Cyber Monday was chosen as a new national day of giving. #GivingTuesday celebrates how people can do more with their wallets than just shop--and that we can give as good as we get. #GivingTuesday is about ordinary people coming together and doing extraordinary things for causes that mean something to them.

We'll be using Facebook and Twitter to encourage support of the Foundation's mission and goals. If you don't already follow us on Facebook (see link at end of this article) and Twitter (@IBCResearch) consider doing so, then share and retweet our posts to help educate others about IBC and the important work of the IBC Research Foundation.  These formats are powerful tools and we want to use them creatively to inspire, educate, and change the future for those facing IBC. Join with us, invite your friends and family, give a gift in honor or memory of a loved one or friend this holiday season making a difference for someone else.

Federal research funding is tighter than it's ever been and as a result young, promising researchers are leaving the field.  To improve IBC diagnosis, treatment, and survival we need quality research and that takes money.  The Inflammatory Breast Cancer Research Foundation is a strong patient voice in the research community, supporting projects with the potential to move from the lab to the clinic in a timely fashion.  If you want to be a part of this important work, please join us as we celebrate #GivingTuesday 2013.

To make a donation now, go to: our Donations page where you can donate online or get information to mail a check; or our FaceBook page which has a link for donations.