As you know, the Inflammatory Breast Cancer Research Foundation marked it's 15th birthday last month......however, that's just the start of a year long celebration! This organization was started to facilitate IBC research and to educate both the lay and medical community about IBC. Needless to say, it takes a village to do that and we've counted on you to help.

For 15 years we've been the patient voice in the research community and have been able to facilitate important research through grants, providing tissue samples, and connecting researchers with one another and with appropriate patients. Like it or not, that work takes money. To that end, we've partnered with CrowdRise for a year-long BIRTHDAY PARTY themed event to raise funds to continue this important work.

https://www.crowdrise.com/IBCRF15thBirthdayEvent

CrowdRise provides two ways for you to support the Inflammatory Breast Cancer Research Foundation. Of course you can use the site for an individual donation OR you can use the site to start YOUR OWN fundraiser in support of IBCRF! Consider using YOUR birthday to build your personal fundraiser page. Invite your friends and family to celebrate your birthday with a donation and turn that single donation into a bundle! Celebrate a cancerversary, end of treatment, or any important life event with a fundraiser. Or how about remembering a loved one who's inflammatory breast cancer journey has inspired you. Let's use this event to celebrate those who are "dancing with NED" (No Evidence of Disease), those searching for strength to face continued treatment in the midst of disease spread, and those who have been taken from us too soon. The options are limited only by your imagination.

Unlike some non-profits we don't have a development office (gosh, we don't even have an office!) sending out fancy letters asking for support, we don't use telemarketers to harass you during mealtimes with calls, we don't send out email solicitations, and we don't want to resort to any of those tactics to keep afloat. 

We're counting on you to make this work. Members of our Board are already busy thinking of fun ways to encourage your donations. What incentive would spark your donation? We've seen amazing things happen with an "Ice Bucket Challenge" for ALS. What will you do???

Watch this space next month when Executive Director, Ginny Mason, launches her "kiss IBC goodbye" campaign! 

 

We wish to thank the family of Mary Ann Valaitis Whaley for requesting that memorial donations come to the Inflammatory Breast Cancer Research Foundation.

The Inflammatory Breast Cancer Research Foundation is dedicated to facilitating quality inflammatory breast cancer research to improve diagnosis, treatment and survival while at the same time providing education and raising awareness in both the lay and medical communities. 

"The National Comprehensive Cancer Network® (NCCN®), a not-for-profit alliance of 25 of the world's leading cancer centers devoted to patient care, research, and education." This year, NCCN published two new booklets for patients with stage III or IV breast cancer. Links below will go directly to those booklets online.

NCCN Guidelines for Patients, Stage III Breast Cancer® v1.2014
Easy to read comprehensive online booklet. Read it online, or download it [.pdf, 80 pages, 1.86MB].

NCCN Guidelines for Patients, Stage IV Breast Cancer® v1.2014
Easy to read comprehensive online booklet. Read it online, or download it [.pdf, 66 pages 1.4MB].

In addition to the patient booklets, newly revised professional guidelines for breast cancer screening and diagnosis and clinical practice in oncology were published this year. To access those free publications, registration is required. Links are provided on our NCCN IBC Guidelines page.

NCCN Guidelines Breast Cancer Screening and Diagnosis® version 1.2014. 

This is a 63 page, 881K pdf file available to download. Of particular interest to the IBC community is page 19 "Presenting Signs/Symptoms of Skin Changes," shown in a decision tree format. There is an extensive "Discussion" of screening and diagnosis section, and on page 51 is discussion of skin changes and Inflammatory Breast Cancer. 

NCCN Clinical Practice Guidelines in Oncology (NCCN guidelines)®, Breast Cancer version 3.2014. 

This is a 1.8MB pdf file, containing 186 pages. Inflammatory Breast Cancer is listed in the page 3 table of contents, under Special Considerations. The Inflammatory Breast Cancer section is on page 71-72. It is a decision tree diagram with headings of Clinical Presentation Workup and Treatment. 

The NCCN Clinical Practice Guidelines in Oncology are written for physicians and other healthcare professionals...If you are a patient or family member, please review the NCCN Guidelines with your doctor or nurse, as they are intended for medical professionals and are written in highly specialized language. 

[Editor's note: Here's a little history about how the IBC treatment and screening guidelines came about.  Our Executive Director, Ginny Mason, was invited to attend a lunch meeting of the NCCN Breast Cancer Panel by an advocate friend.  With a bit of fear and trembling, Ginny raised the issue of including an IBC specific treatment guideline. The committee chair responded that IBC was included in the locally advanced breast cancer guideline so nothing more was needed.  

Over the next three years Ginny kept attending the lunches and presenting data to support the need for an IBC guideline.  At last the committee agreed and a new IBC guideline was developed and announced at the 2007 San Antonio Breast Cancer Symposium!  

This victory lead to an invitation to review the Skin Changes section of the Breast Cancer Screening guidelines.  At that time IBC wasn't actually mentioned at all, just referred to as "a serious problem."  After a series of conference calls and emails the screening guideline was reworked and now provides an excellent decision tree to aid physicians in ruling out IBC when patients present with worrisome symptoms.]

Just added to the ongoing IBC Research 2014 page!

Schinkel, J., et al. (2014). Racial/ethnic differences in breast cancer survival by inflammatory status and hormonal receptor status: an analysis of the Surveillance, Epidemiology, and End Results data. Cancer Causes & Control:CCC, 25(8), 959-68.

Takiar, V., et al. (2014). Predictors of durable no evidence of disease status in de novo metastatic inflammatory breast cancer patients treated with neoadjuvant chemotherapy and post-mastectomy radiation. SpringerPlus, 3, 166-166. [Free full text available.]

New addition to the IBC Research 2013 page:

Masuda, H., et al. (2013). Comparison of molecular subtype distribution in triple-negative inflammatory and non-inflammatory breast cancers. Breast Cancer Research: BCR, 15(6), 112. [Free full text available]

[Editor's note: If free full text of an article is provided, it is linked on the IBC Research 2014 or 2013 pages. If only the abstract is provided free, there is a link to the record in the PubMed database because some journals eventually provide free full text.]  

How many IBCers or family members have shared their inspirational stories of hope, help, and memories?

The answer can be found somewhere on our website. When you think you've identified the right answer, submit your answer here.

So...ready, set, go! Start exploring the website! You might discover something new! Your entry must be received by 9/30/2014 to be eligible to win an awesome prize from our prize closet. One winner will be randomly chosen (by a non-biased neighbor) from all the correct answers.