Inflammatory breast cancer is a particularly deadly variant. Over half of women who contract it die within 5 years. I was diagnosed in June 2007, and I’ve been making the most of my time as a mother, an astrophysicist, a wife, a friend, and an advocate that women and their doctors know the signs and symptoms of this sneaky cancer– because with early detection comes a better chance of survival. Inflammatory breast cancer forms in nests and sheets in the lymphatic system of the breast — it’s the breast cancer without a lump — and everyone needs to know the other symptoms and changes in our breasts that could also mean trouble.
Here’s what I tell my friends: Know yourself. If something changes in one of your breasts, lump or no lump, call the doctor. If you’re told it’s mastitis, but it doesn’t heal after a 10-day round of antibiotics, insist on a biopsy “to rule out inflammatory breast cancer.”
Until everyone knows that signs of breast cancer also include a rash, a bug bite that won’t heal, heat, and a funny texture to the skin of the breast that looks or feels a little like an orange peel, I will keep speaking out about my cancer, about what happens when cancer becomes metastatic (the killer of over 90% of breast cancer patients but the recipient of only 3% of the funding), and about the friends that I’ve made through my cancer journey. I’ve been lucky enough to speak at the annual meetings of the American Cancer Society, Blogalicious, and BlogHer about inflammatory breast cancer, metastatic breast cancer, and the power of social media.
Speaking out has led to some incredible exposure online, at conferences, and in traditional media. Here is a short listing of articles published by or about this quest, as well as a few articles on the work I’ve done in planetary science policy.
Media (U.S., Canada, and Australia), including health and science coverage by CNN.com, Health, USA Today, and the Huffington Post:
- Daily Mail (UK): Families in Space? Scientists say Women will be among the First Pioneering Crews to Visit Mars, 15 November 2011;
- The Times of India: Mars Explorers will Include Women, Experts Say, 14 November 2011, and similar:
- – Cosmos Magazine: Mars Explorers will Include Women, Say Experts, 14 November 2011;
- – France 24: Mars Explorers will Include Women, Experts Say, 14 November 2011;
- – Sri Lanka Daily News: Women among Pioneers to Set Foot on Mars, 12 November 2011;
- – Hindustan Times: Mars Explorers will Include Women; Experts, 11 November 2011;
- – Emirates 24/7: Mars Explorers will Include Women, Experts Say, 11 November 2011;
- USA Today: Women with Advanced Breast Cancers Feel Left Out, Forgotten, by Liz Szabo, 20 October 2011;
- – The Tennessean: When There’s No Cure, There is Little Support, 21 October 2011;
- – Lansing State Journal: When There’s No Cure, There’s Little Support: Metastatic Breast Cancer Takes Added Toll, 21 October 2011;
- – Chicago Sun Times: Women with Advanced Breast Cancers Feel Left Out, Forgotten, 23 October 2011;
- Freshly Pressed, WordPress.com feature: Metastatic Breast Cancer, 26 October 2011;
- Orlando Sentinel: Mom Living with Cancer Eloquently Shares Her Life, 17 October 2011;
- Huffington Post: Seeing the Metastatic Side of Breast Cancer, by Dr. Elaine Schattner, 13 October 2011;
- Two Ridges Presbyterian Church Newsletter: It’s Not Fair!, a reprint of my 23 September 2011 blog post;
- Inflammatory Breast Cancer Foundation’s Focus on IBC: Inflammatory Breast Cancer: Genetic Origins?, September 2011; featured column in October and November;
- Pinterest feature: Interview with Susan Niebur, Astrophysicist and Mom, 25 July 2011;
- Nature: NASA Faces Dearth of Mission Leaders, Nature 475, 15-16 (2011) and online 5 July 2011;
- MSNBC.com: Space on a Budget Balances Risk, Innovation, 27 June 2011;
- Mom Market Trends: Susan Niebur Named Bloganthropy 2011 Award Winner, 25 June 2011;
- Living Beyond Breast Cancer: Understanding Inflammatory Breast Cancer, Spring 2011;
- Bloganthropy: Blogger of the Month award, Feburary 2011;
- American Cancer Society More Birthdays Blog: The Power of One, 26 January 2011;
- Care2.com: Blogger Reaches out to Breast Cancer Patients, January 2011 (and other articles);
- Lymphedivas: Diva Award, 18 January 2011;
- Today’s Mom Blog: If Elizabeth Couldn’t Beat This, How Can We? 8 December 2010;
- Notebook Magazine (Australia): Inflammatory Breast Cancer, November 2010;
- BlogHer: Blogging Through Adversity: WhyMommy Susan Niebur and Others Fight Cancer One Word at a Time, 1 April 2010;
- American Cancer Society‘s annual meeting, 18 November 2009;
- Fox News, November 17, 2009;
- Parenting on the Peninsula, October 2009;
- CNN.com, Fighting the Cancer a Mammogram Can’t CatchJuly 8, 2008;
- Health Magazine: Fighting the Cancer a Mammogram Can’t Catch, June 1, 2008;
- – reprinted in local newspapers and Annual Editions of Human Sexualities, 31st edition, 2010;
- Cancer Wise, MD Anderson’s online newsmagazine, 2008;
- Letter to the Editor, The Washington Post, December 3, 2007;
- Fox 5 News, October 24, 2007: Video Clip 1, Video Clip 2, Video Clip 3 (me), Live WebChat (with me!);
- The Wheeling, WV, Intelligencer, October 12 (blog) and October 25, 2007 (print);
- Parents Magazine and the Goody Blog, October 2007;
- Edwards Magazine (Canada), September 2007;
- ParentDish;
- Babble / StrollerDerby;
- DC Metro Moms; and
- 415 blogs, including 100 during Breast Cancer Awareness Month 2007 alone!
If you’re writing about breast cancer, lymphedema, planetary science policy, activism in social media, or you’d like to know more about the 20 Mothers With Cancer from around the world, please email me or leave a comment on my Toddler Planet blog and I’ll be happy to talk with you!
Dr. Susan Niebur 
Leave a Reply