IBC

Inflammatory breast cancer is the rarest and most deadly of the breast cancers.  It strikes young women as often as older women, breastfeeding mothers as often as grandmothers, and women with and without a history of breast cancer in their family.  It does not always form a lump in the breast.  Instead, it forms in sheets and nests in the lymphatic system of the skin, appearing only after it clogs the lymph system with cancer, causing the skin to swell and turn red as if in anger.

Sometimes, it appears first as a mark like a bug bite, or a bruise that just won’t heal.  Sometimes, the texture of the skin changes first, becoming tough, hard, or with little dimples like an orange peel.  Sometimes, it feels thick to the touch, or hot, or just … different.

Inflammatory breast cancer is often misdiagnosed as mastitis, especially in nursing women.  The important thing to know is, if you are diagnosed with mastitis and it doesn’t clear up with 10 days of antibiotics, SOMETHING ELSE may be wrong.  Please, please go back to your OB/GYN or other health care professional and talk to her again.  Ask her for tests to rule out inflammatory breast cancer.  Tell her that you’re worried, that something just isn’t right.  Insist on futher tests and a skin and/or core biopsy.  Because each week that you delay is a week that this cancer will grow and expand and be just that much harder to eradicate.

Survival rates for women diagnosed with inflammatory breast cancer are grim.  Only 25 to 50 percent of women will survive five years.  Believe it or not, this is a HUGE improvement over the survival statistics of just a few years ago — when only 1-2% could expect to be alive five years after diagnosis.  Even with chemotherapy, surgery, and radiation, 90% of women will suffer a recurrence.  This is a lifelong battle for those that are diagnosed, and it is a very difficult disease to battle, as it’s one of the few cancers that are obvious on the surface of the body; as it marches across a woman’s breast, it is very hard to watch.

For more information, please visit:

There are a few blogs out there from IBC survivors as well. Check out what these other women have to say about living with IBC:

Edited 9/26 to add:  There is new hope — just today — for HER-2 positive cancers.   We need this research.  This is saving lives.

39 Responses to IBC

  1. [...] Inflammatory Breast Cancer [...]

  2. [...] Inflammatory Breast Cancer [...]

  3. [...] time for me to come out of my blog-lurker closet and join Team WhyMommy in spreading the word about Inflammatory Breast Cancer and breast cancer in [...]

  4. [...] Just one day of life like it was before IBC. [...]

  5. [...] Inflammatory Breast Cancer [...]

  6. [...] Inflammatory Breast Cancer [...]

  7. [...] Inflammatory Breast Cancer [...]

  8. [...] Inflammatory Breast Cancer [...]

  9. [...] the Team Why Mommy site and think about joining! This is the home of a new mom who is fighting inflammatory breast cancer. Joining Team Why Mommy would be an easy way to make a diffrence today! My mom is doing this today, [...]

  10. [...] Inflammatory Breast Cancer [...]

  11. [...] who is battling inflammatory breast cancer. She’s truly an inspiration. Check out her blog, read more about IBC, and keep her in your thoughts and [...]

  12. [...] in your thoughts today. She’s having a double mastectomy today, in her ongoing battle against Inflammatory Breast Cancer. She’s the mom of 2, and is an incredibly strong lady. I wish her the very best. In other [...]

  13. [...] Inflammatory Breast Cancer [...]

  14. [...] Inflammatory Breast Cancer [...]

  15. [...] and found that it was totally on the level. A brave mom, who has this disease, wrote in her blog at http://toddlerplanet.wordpress.com/inflammatory-breast-cancer/ [...]

  16. [...] she received her cancer diagnosis, she educated many thousands of people about inflammatory breast cancer, fighting for funding and [...]

  17. In the stars says:

    [...] my friend, I learned about inflammatory breast cancer (IBC) for the first time. I learned about how to support a friend with cancer (and then I did it, [...]

  18. [...] kids in DC introduced me to the world of blogging. Sadly, over time, there were more posts about fighting Inflammatory Breast Cancer than about museum trips, but Susan retained the same joyful voice that endeared her first to Moms [...]

  19. [...] by lucretia Earlier today, the news that Susan Niebur (a.k.a. @whymommy) had passed away was posted in a very touching tribute by her husband  Curt, on the blog that so many people came to know her through – Toddler Planet.  Susan finally lost her 5 year battle with Inflammatory Breast Cancer. [...]

  20. [...] also fought for research into cancer and spread awareness about inflammatory breast cancer, the breast cancer that presents without a lump. She created Mothers with Cancer to support other [...]

  21. [...] cancers and is highly aggressive. It can quickly spread to other organs. Susan had a wonderful IBC page with basic info, as well as links to other sources for information. Please take a moment to read [...]

  22. [...] also fought for research into cancer and spread awareness about inflammatory breast cancer, the breast cancer that presents without a lump. She created Mothers with Cancer to support other [...]

  23. [...] with a lump, as is the the case most of the time, it’s actually the rarest form known as Inflammatory Breast Cancer. It’s seriously frightening and after reading that post you can bet I’m going to get [...]

  24. [...] She wore the hats of wife, mother, sister, daughter, best friend, aunt, NASA scientist, blogger, inflammatory breast cancer butt-kicker and many [...]

  25. [...] then, four months later, she was diagnosed with cancer. Inflammatory breast cancer, a particularly rare and deadly cancer that tends to strike younger women and presents mostly with [...]

  26. [...] it forms in sheets and nests in the lymphatic system of the skin, appearing only after it clogs the lymph system with cancer, causing the skin to swell and turn red as if in anger. Lumps aren’t the only symptom for cancer. Educate yourself [...]

  27. [...] to be a better advocate and communicator. From Susan, who died this past February, I learned about inflammatory breast cancer a deadly breast cancer that forms in sheets, rather than in lumps you can feel. I learned about [...]

  28. [...] learned about inflammatory breast cancer very accidentally, when researching my mother-in-law’s breast cancer diagnosis. There was a link [...]

  29. [...] Foundation and the Mayo Clinic.  I also encourage you to visit the Susan Niebur’s website Toddler Planet where she wrote extensively about her experience with IBC.  Susan passed away from the disease in [...]

  30. [...] blog archive to really understand it, and also followed all of the links on her really helpful IBC links page. Clearly because of the dearth of good quality information available at the time on the internet, [...]

  31. [...] @WhyMommy. As a woman with breast cancer, she was driven to raise awareness about her own disease, inflammatory breast cancer, a pernicious and aggressive form of cancer. Like Rachel, she spoke eloquently and candidly about [...]

  32. [...] We’ll watch the signals. [...]

  33. [...] We’ll fight. We’ll check our skin. We’ll watch the signals. [...]

Follow

Get every new post delivered to your Inbox.

Join 532 other followers

%d bloggers like this: