Inflammatory breast cancer

Today, I interviewed an awe-inspiring mom with a super-serious message that I felt compelled to share immediately.

Susan Niebur of Silver Spring, Md., whose aunt is Martins Ferry resident Linda Lawrence, is spreading the word about inflammatory breast cancer, a rare (8,500 cases a year), little-known, little-researched and extremely aggressive form of breast cancer.

Inflammatory breast cancer affects the skin and lymph vessels of the skin. It does not present itself as a lump, rather symptoms include warmth, redness and swelling, like an infection, and the skin may appear pitted or ridged. It spreads rapidly and is ALWAYS diagnosed as an advanced stage 3 or stage 4 breast cancer, according to the National Cancer Institute.

Susan says it has a survival rate of 40 percent after five years; the National Cancer Institute puts it in the range of 25 percent to 50 percent -- MUCH lower than other forms of breast cancer.

"Yes, this is a big, bad, ugly cancer," she said.

Treatment is six months of chemo to shrink the cancerous area, then removal of the breast, followed by radiation. Chance of recurrence: 90 percent.

Susan is in the middle of her chemo and said she is now on a new treatment and better pain medication. At first, she was too sick to get out of bed. She was too bruised and weak and sore to read her 3-year-old a bedtime story or lift her 8-month-old into his crib. Her parents and her husband's parents alternated staying at their house to help take care of the boys.

My head began to reel as I listened to Susan's story and feverishly jotted notes. I had to force myself to stay in the moment and process later.

Later, I read her latest blog posts about the horrors of chemo.

I thought back to our interview, while wiping away my tears. I had asked her, "How do you deal with your illness as a mother?"

"I totally take pleasure in all the little things," she replied. "I appreciate every giggle, every hug. That's the way life should be lived anyway."

Readers, take note! Signs of inflammatory breast cancer include: redness, swelling, warmth, aching, burning, brusing, pitted or ridged skin, increase in breast size, tenderness or an inverted nipple.

Said Susan: "If you know about it and know what to look for and something starts to look funny, ... call your OB right away and get an early appointment and use the words: 'Can we rule out inflammatory breast cancer?' Because the earlier you catch it, the more chance you have of actually shrinking it."

Note to nursing mothers (Susan was one when diagnosed): If you are prescribed an antibiotic for mastitits and the symptoms remain after taking the full course, ask your doctor to rule out IBC.

I will be writing more about inflammatory breast cancer in an upcoming edition of The Intelligencer and Wheeling News-Register. In the meantime, click the links to learn more.