The third week of March was an emotional week for me. On March 18, I marked 20 years since my diagnosis of inflammatory breast cancer!! It still seems unreal to type that number when referring to my diagnosis cancerversary. My symptoms started when I was just 40 years old but like many, I couldn't get anyone to take them seriously, so I was 41 by the time I received the official diagnosis.

Lots of chemo (FAC), surgery (residual tumor and 11 out of 16 nodes positive), and finally radiation with an extra week of boost.....and I'm still here. Blood clots in my lungs & hip from Tamoxifen, spinal fusion and multiple spinal fractures, problems with my shoulder & chest...but...I'M STILL HERE!!

To add to the emotions of the week, our oldest granddaughter got married on March 21st. She was just 3 months old the day I was diagnosed. The following year I wrote her a letter to let her know how much I loved her and how helpful she was in getting me through the treatment months. I wasn't sure I'd live to tell her those things, so I put them on paper. On the day before the wedding, I was blessed to deliver that letter to her in person. The tears were flowing but they were tears of joy to be able to share in the joy of this special time with her and her family.

For those just starting this journey, take heart. While IBC is still a deadly, nasty disease, more and more of us are surviving. The Inflammatory Breast Cancer Research Foundation IS making a difference by facilitating quality, patient-focused research to change
the future for those facing this disease.

I invite you to consider a donation to support this research to help me celebrate this amazing milestone. Donations can be made on-line or by mail (see new address in following article).

Thanks for sharing in this special celebration with me. I'm going to celebrate ALL YEAR!!

Hugs to all.............Ginny

[Editor's note: if you would like to share your IBC experience, consider submitting it. Contact editor by email.

In March 2014, the Department of Defense Breast Cancer Research Program (BCRP) published The Breast Cancer Landscape (.pdf document). This overview describes what is currently known about breast cancer incidence, death, recurrence, metastatic disease, risk factors, and treatments. 

Inflammatory Breast Cancer Research Foundation Board member Pat Haugen has served as chair of the Integration Panel (the group that makes the final funding decisions) and continues to serve on the Panel. Board members Ginny Mason and Carol McWilliams have done Peer Review.  Ginny has also served as an ad hoc member of the Integration Panel.

The vision of the BCRP is to end breast cancer by funding innovative, high-impact research through a partnership of scientists and consumers. 

Learn more about the Breast Cancer Research Program:
http://cdmrp.army.mil/bcrp/ .

The Inflammatory Breast Cancer Research Foundation couldn't do the work it does without dedicated "behind the scenes" people. One of those individuals is Laurie Isenman. If you've made a donation you probably received an acknowledgement/thank you email or letter signed by Laurie. Laurie wasn't aware of inflammatory breast cancer until she got to know Owen Johnson, who lived in her neighborhood. The Foundation needed a treasurer and Laurie had experience, thanks to her work with Little League. Over the years Laurie learned about inflammatory breast cancer and became an integral part of the organization. As often happens, circumstances change and Laurie has resigned her position in order to manage a busy medical practice. We're grateful for Laurie's excellent work as treasurer (and secretary) and all the extra tasks she handled over the years.

Of course no organization can operate without a treasurer or secretary, so we'd like to take this opportunity to introduce a new face, Melissa Culver-Pekny. Here, in Melissa's own words, is her introduction.

"My name is Melissa Culver-Pekny, I am the new Treasurer and I am an IBC Survivor! I was diagnosed with Inflammatory Breast Cancer on July 9, 2009 at the age of 34. I am married to a wonderful husband named Todd, and we have two children Campbell, age 8 and Chase, age 6.

After my diagnosis, I was in shock along with my family. Being unfamiliar with this type of breast cancer, I knew I had to learn as much as I could about the disease. Shortly after my diagnosis, my sister found the IBC Research Foundation on the internet. She contacted the Foundation to learn more about the disease. From this connection I made contact with Ginny Mason.

Shortly afterwards, Ginny moved to the Lafayette area and we were able to meet in person. We have remained in contact and have been friends ever since. I have attended the Young Survival Coalition Conference and have seen Ginny in action, spreading the word about IBC. I am very excited to be a part of a great foundation that is an advocate for IBC."

Changes

The Inflammatory Breast Cancer Research Foundation was incorporated in 1999 in the state of Alaska. Yes, you heard that right, Alaska! Founder and past President, Owen Johnson, lived in Alaska at the time so it made sense to incorporate there. When Laurie took over as treasurer, the organization mailing address was changed to Bainbridge Island, WA to streamline mail and bookkeeping. After choosing Melissa to serve as treasurer, the Board of Directors made the decision to move financial operations to Indiana and apply to use a business address in the state. While our existing literature still lists Bainbridge Island, WA, you'll now see a new mailing address on the website of P. O. Box 2805, West Lafayette, IN 47996.

Gradually we'll be replacing the old literature with new containing the new address. In the meantime mail sent to the old address will still reach us while we transition to the new address. Our toll-free phone number (1-877-stop-ibc) remains the same. Of course our spot in cyberspace hasn't changed so you can still reach us via the website: http://www.ibcresearch.org.

The past few months have been a flurry of activity and paperwork as we work through all the changes, so bear with us if it takes a bit longer for a donation to be acknowledged or a message to be answered. Know that we're doing our best to keep things going as we continue our important work of facilitating quality, patient-focused inflammatory breast cancer research while educating the medical and lay communities about IBC.

Love to shop online? Did you avoid the crowded malls at Christmas by sitting at midnight in your pajamas, with your laptop or smart phone, checking off each item on your list with a click or a tap? If so, you could have been supporting the Inflammatory Breast Cancer Research Foundation with those purchases.
The Inflammatory Breast Cancer Research Foundation has joined the growing list of non-profit organizations who have joined the AmazonSmile program. With this program Amazon will donate 0.5% of the price of your eligible AmazonSmile purchases when you shop at AmazonSmile (smile.amazon.com). It's just that easy.

When you're ready to browse Amazon.com for some shopping, click on http://smile.amazon.com , type in Inflammatory Breast Cancer Research Foundation and you'll be set to shop and to support quality, patient-focused inflammatory breast cancer research. It's just that easy.

[Editor's note: first I went to Amazon Smile and selected the foundation as my charity, then I bookmarked it. Now when I go to that bookmark, I see not only my usual "Welcome Carol" message but also see "Supporting: Inflammatory Breast Cancer Research Foundation."]

It may seem like just a little thing, 0.5%, but it can make a difference in the lives of those facing this deadly form of breast cancer. Another competitive research grant is planned for 2015, by participating in AmazonSmile when you shop you are helping to fund important, patient focused research. Use that "retail therapy" to help others!

And by the way..........thanks!!

[Editor's note: I have been shopping with Amazon since July 1995, the date it began by selling books only online. Word of such an astounding resource spread like wildfire through the librarian communities online.] 

Statistics, the very word is enough to give me a headache! Yet when I was diagnosed with IBC in 2003, my first instinct was to read the most current research on IBC and use it to be a full participant in the decision making process with my oncologist. 

Not everyone wants to read medical research, it's complicated and challenging. But if you have been put off by fear of statistics, Naked Statistics: Stripping the Dread from the Data (available in paperback or hardcover) by Charles Wheelan may help you.

Quote: "Statistics can be used to explain everything from DNA testing to the idiocy of playing the lottery. Statistics can help us identify the factors associated with diseases like cancer...."

 From the New York Times book review: "While a great measure of the book's appeal comes from Mr. Wheelan's fluent style-a natural comedian, he is truly the Dave Barry of the coin toss set-the rest comes from his multiple real world examples..." 

This book, published in 2013, should be found at your local library or at your favorite in-person or online bookstore. I discovered it while wandering in my local bookstore. The title intrigued me, the back cover and the reviews convinced me.

For those interested in getting started in reading medical research, check the resources on our Introduction to Research page. Enjoy!

--Carol McWilliams, editor Focus on IBC