Susan: Writing Her Way Through Inflammatory Breast Cancer

Phyllis Johnson Health Guide
  • I've known Susan since July 2007.  I've never met her, but I've gotten to know her through her active participation on the mailing list at and through her blog Toddler Planet.


    Part of Susan's story is familiar to people in the inflammatory breast cancer (IBC) community.  As a young mother nursing her baby, she noticed the baby didn't want to nurse on the right side.  When that breast became swollen with dimpled skin, Susan thought it was related to the nursing problems. 


    Like so many inflammatory breast cancer patients, it didn't occur to her that she might have cancer symptoms.  After all she didn't have a lump.  Her pediatrician and lactation specialist weren't worried.

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    After her mother-in-law was diagnosed with breast cancer, Susan did some research on the topic and read that her swelling, dimpled and thickened skin, and redness could be cancer symptoms.  Unlike many other IBC patients whose doctors often insist that young nursing mothers don't get cancer, Susan got a quick diagnosis when she went back to the doctor armed with some facts about her symptoms.  


    As Susan's story suggests, the computer is an invaluable tool for people with health concerns.  A computer search helped Susan get a quicker diagnosis, and writing about her cancer on a blog helped her to sort out her feelings, connect with others, and provide useful information that has in at least one case led a woman to have a faster IBC diagnosis.  


    Mammograms often miss IBC because many IBC patients don't have a lump.  However, some do, and mammograms work just fine for them.  Studies have also shown that many IBC patients without a lump show subtle changes in breast density and skin thickness.  Mammograms and ultrasounds continue to be important elements of the diagnostic process for IBC.


    If you follow Susan's story on her blog, you'll be inspired by the courage, humor and grace she has shown.  Susan has finished treatment now and is in that difficult waiting period all cancer patients know.  She wrote in a recent blog, "Once upon a time, I thought that I would fight cancer, do the chemo, do the surgery, do the radiation, and then either be fine ... or not be fine.  What I didn't expect was all this in-between."


    I remember that in-between time, and I've watched Susan get through all the other stages of the cancer journey.  I know she will find a way to make sense of this stage too.  I am honored to know Susan even though I've never met her.  I look forward to reading her letters and blogs for years to come.

Published On: June 05, 2008