Focus on Inflammatory Breast Cancer Newsletter

Advocacy in Action Videos

An organization that produces outstanding cancer educational resources, Vital Options International, recently produced a series of videos focusing on research advocacy. These videos were filmed during the American Association of Cancer Research (AACR) Annual Meeting in April. Inflammatory Breast Cancer Executive Director, Ginny Mason joined two advocates from Research Advocacy Network to discuss research advocacy. Selma Shimmel, host, founder and CEO of Vital Options International, guided the panelists in discussing the role of advocates in research as well as the challenges faced by those choosing this path.

In addition to the Advocacy in Action panel on research advocacy, the panelists were invited to share about their individual organizations and the disease(s) sites they represent. Two videos on inflammatory breast cancer were produced from this filming. One focuses on the Inflammatory Breast Cancer Research Foundation and the other is an educational piece on inflammatory breast cancer.

Watch the video about the Foundation.

Watch the video about Inflammatory Breast Cancer.

Our thanks to Selma Shimmel of Vital Options International and producer Terry Wilcox for providing this venue for sharing the work of the Inflammatory Breast Cancer Research Foundation and educate the public about inflammatory breast cancer. Feel free to share these links with your family and friends.

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...And She's Still Smiling!

by Ginny Mason, RN, BSN, President and Executive Director

This month I'd like to introduce you to an amazing inflammatory breast cancer survivor, Krysti. We first met not long after her surgery for bilateral (both breasts) inflammatory breast cancer (IBC) in 2005. Even in the midst of aggressive treatment Krysti was anxious to meet others who shared her diagnosis. The gathering of IBC folks from Indiana, Michigan, Kentucky and Ohio was the perfect place to ask questions and see how others managed to cope with IBC. Those gathered were at various stages of IBC treatment as well as long-term survivors, no longer in treatment. It can be powerful for those in active treatment to see "there is life after IBC."

Krysti was quoted by CURE magazine as saying, "Two weeks after surgery, I met Ginny Mason, the Executive Director of the Inflammatory Breast Cancer Research Foundation, who was doing a meeting in Indianapolis.......I walked in and met all these inflammatory women, and it was amazing......she (Krysti) dived right into the information, saying her motto has always been, "better the beast I know than the one I don't." Read the complete article about Krysti in CURE.

Starting her journey at stage IV has made things even more challenging. Not one to sit back and wait for someone else to make suggestions and decisions, Krysti takes an active role in her treatment by learning everything she can about IBC and exploring potential clinical trials. She calls herself a "clinical trial junky"! Armed with the scientific training she received through the National Breast Cancer Coalition's Project LEAD science training program; an Indiana University Simon Cancer Center Breast Cancer Research Program and other programs, she attends breast cancer conferences eager to learn about current treatment advances and look for future treatment options.

Krysti has been able to use her knowledge and patient experience to help others through her work with the Young Survival Coalition. She knows first hand the challenges young women face juggling the many demands of family life and cancer. She's also active in metastatic breast cancer initiatives to bring more awareness to stage IV disease and need for research in this area.

A series of clinical trials have managed to keep her lung lesions somewhat under control, although the current trial requires travel to Tennessee regularly for the trial medication and assessment. Between side effects and travel she often has little energy left for other things but those who know Krysti, also realize she's known for pushing the limits on a regular basis!

In the spring of 2010, while being treated for a sinus infection, Krysti began to worry that her symptoms were more than just sinus problems. When the treatment didn't seem to be taking care of the problem she talked to her doctor and suggested evaluation for brain metastasis. Unfortunately, Krysti's instincts were right and the MRI found a small lesion on the cerebellum. With just one small lesion, she was a good candidate for something called Gamma Knife surgery. "Gamma Knife (R) surgery, sometimes referred to as stereotactic radiosurgery (SRS), is a non-invasive method for treating brain disorders. It is the delivery of a single, high dose of irradiation to a small and critically located intracranial volume through the intact skull. It is preferred for its extreme accuracy, efficiency and outstanding therapeutic response." (http://www.elekta.com/healthcare-professionals/products/elekta-neuroscience/gamma-knife-surgery.html)

Even in the midst of this new challenge, Krysti promised to share the experience with her friends via photos and commentary. As the photos arrived there was Krysti smiling for the camera while she waited for the hardware frame to be fitted to her head (halo). Then came the photo of Krysti on the phone.....in spite of the metal halo she was chatting away with someone! The photos continued, documenting the event with a smiling Krysti in each one. What a gift we'd been given! Krysti showed us that Gamma Knife isn't the awful procedure we'd pictured in our minds. For many of us knowledge is power and seeing photos like Krysti's can help erase some of that "fear of the unknown" should we have to face Gamma Knife treatment at some point in our IBC journey.

I'm happy to report that Krysti has kindly shared her pictorial Gamma Knife journey with the Inflammatory Breast Cancer Research Foundation. She's worked with our web master Carol, to put together a page in the photo section of the website journaling this experience. Krysti has been through this experience two times, once in 2010 and again in 2011 with good results.

Krysti continues frequent, regular trips to Vanderbilt for medication and monitoring of her current clinical trial. Recent scans show that the trial drug is working and in spite of some difficult side effects, Krysti is grateful. She's enjoying family, work, friends, and just life in general. For now she doesn't have to be shopping for another clinical trial......but you can be sure she'll be following the happenings at the American Society of Clinical Oncology (ASCO) Annual meeting, so she's prepared for whatever is next.

A First-Timer's View of the NBCC Advocacy Summit
by Carol McWilliams

Whew! A jam packed 3 and 1/2 days began with a wild and crazy opening rally in the afternoon Saturday, May 5th. Deliberately modeled on a political convention, attendees were seated by state, reported progress towards National Breast Cancer Coalition goals, and loudly cheered for their state. The Florida group (I was part of this group) had colorful inflated fish and palm trees, and Flamingo eyeglasses. The very large contingent from Oregon wore mini umbrella hats. It rains a LOT in Oregon!

Sunday provided continuing education in the science of breast cancer. Particularly informative were sessions on NBCC's Artemis Project and tumor immunology.

Workshops and one plenary session addressed the many complex issues involved with clinical trials, a particular interest of mine. One speaker commented that there are a lot of useless studies using (scarce) funding that are looking at questions that don't need answers. Another speaker related that studies from academic institutions in many cases are neither blinded, nor have control groups, nor can be reproduced at another institution. A third speaker declared that clinical trial volunteers should be treated "like soldier heroes," should get a "thank you" letter from the investigator, and be talked to throughout the process if the volunteer so wishes. Yes! After all, without patients there would be no participants in clinical trials!

Monday lunch was a delight! It's always fun to meet new people who share the same passion for putting an end to breast cancer. The speaker was Dr. Otis Webb Brawley, chief medical officer and executive vice president of the American Cancer Society. Because I had recently read his book, How We Do Harm: a doctor breaks ranks about being sick in America, I especially loved hearing him speak to the assembled NBCC advocates. BTW--I cannot recommend this book too highly! It is disturbing, but achingly honest about some of the problems with cancer diagnosis, treatment, and care.

The last day we visited Congress in support of the Accelerating the End of Breast Cancer Act, a bill introduced in the House of Representatives. The Florida group of advocates divided into smaller groups and visited the offices both Senators, and the offices of all 25 Florida Members of Congress. It was an exhausting day, and an enlightening experience.

If you have not attended this unique advocacy and breast cancer educational event, consider doing so next year. As soon as the date is announced, it will be on the Calendar of Events in the newsletter.