The Silence "Almost" Killed Me

When words fail, a picture can speak volumes.
Telling someone about what didn't happen to you is a hard concept.  That the most fatal form of breast cancer that should have taken your life, for some reason… didn't.  Tess, a strong woman, has been living with Inflammatory Breast Cancer, IBC, in her life for over five years. Diagnosed in 2007, she is viewed as a long term survivor.   Some might think that she would just skip off into the sunset happy that she "beat" this disease and never look back.  However, it is not that simple.  Inflammatory Breast Cancer has a very high recurrence rate and as you distance yourself from your diagnosis date, you also pray that you have distanced yourself from this most aggressive cancer.

I can speak from experience that you have to learn how to control and cope with recurrence-reality. Learning to cope keeps you from looking over your shoulder or panicking that any little new health issue is not full blown cancer back in your life. This is somewhat difficult, with the lack of research and the little amount of study done for this under-reported form of breast cancer. Even when we make peace with our situation, we can't help but think about our daughters. 

Living across the country from each other, Tess and I met on the internet when I was forming The IBC Network  Foundation.  I was looking for a logo that would reflect something PINK, but didn't want a ribbon.  I wanted something unique that would change the conversation to something focused on our "different" cancer.   Tess offered to help with an idea I had. She crafted a pink puff, what this lump-less cancer looked like on a PET scan, all webby and cotton candy like.  Ever since that day, Tess has been a source of inspiration and an important volunteer with the IBC Network.  A lover of photography, her ability to convey great emotion and depth with a camera is a gift.  She is mirroring our first ad campaign for the IBC Network "The Silence Is Killing Me", a pink duct tape campaign to launch IBC education to younger women.  Tess has shared her spin on this campaign and is making it  personal.  She included her daughter in her desire to educate others about IBC and she is also showing us something that represents  a bittersweet victory – a scar.  It runs from one side of her body, all the way across her chest to the other side. The long line traces the path to what she hopes is her long term good health.

Why is Tess doing this?  She wants the world to know about IBC.  Tess and I are some of the few who are in that small "long term survivor" club. We want more women to live well, but with the silence, the lack of research and the lack of education, peace is hard to have.   Please tell someone about IBC.   Help us break the silence. 

Hope always,

Terry Arnold

Founder, dx with Triple Negative Inflammatory Breast Cancer, 2007


Inflammatory breast cancer (IBC) symptoms may include:

  • Breast swelling, which one breast is suddenly larger than the other
  • Breast that feels warm to touch and may look infected
  • Itching or shooting pain
  • A dimpling of the breast skin that looks like an orange peel (peau d’orange)
  • Thickening of the skin
  • Flattened or discolored nipple
  • Swelling in underarm or only on one side of neck
  • Might feel lump, however lumps are not common in IBC.



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