Yesterday the blogosphere lost a champion. Susan Nieber, also known as WhyMommy, was many things: a scientist, a wife, a mother to two little boys, and a crusader. She also had cancer. Five years ago she was diagnosed with Inflammatory Breast Cancer and yesterday it took her life.
I didn’t know Susan. I had only in recent months found her Twitter page and her blog. Yet her life and her work still have made an impact on me, a perfect stranger. That was her goal, to spread the word about this horrible disease, to advocate for IBC research, and to help other women avoid this fate. She succeeded.
I want to honor her today, and the only way I know how is to help her to continue to spread her message. Below I am reposting a post she wrote in 2007 about Inflammatory Breast Cancer. Read it, link to it, send it on to the women in your life. Don’t let her fight and her message end with her death.
Inflammatory breast cancer
We hear a lot about breast cancer these days. One in eight women will be diagnosed with breast cancer in their lifetimes, and there are millions living with it in the U.S. today alone. But did you know that there is more than one type of breast cancer?
I didn’t. I thought that breast cancer was all the same. I figured that if I did my monthly breast self-exams, and found no lump, I’d be fine.
Oops. It turns out that you don’t have to have a lump to have breast cancer. Six weeks ago, I went to my OB/GYN because my breast felt funny. It was red, hot, inflamed, and the skin looked…funny. But there was no lump, so I wasn’t worried. I should have been. After a round of antibiotics didn’t clear up the inflammation, my doctor sent me to a breast specialist and did a skin punch biopsy. That test showed that I have inflammatory breast cancer, a very aggressive cancer that can be deadly.
Inflammatory breast cancer is often misdiagnosed as mastitis because many doctors have never seen it before and consider it rare. “Rare” or not, there are over 100,000 women in the U.S. with this cancer right now; only half will survive five years. Please call your OB/GYN if you experience several of the following symptoms in your breast, or any unusual changes: redness, rapid increase in size of one breast, persistent itching of breast or nipple, thickening of breast tissue, stabbing pain, soreness, swelling under the arm, dimpling or ridging (for example, when you take your bra off, the bra marks stay – for a while), flattening or retracting of the nipple, or a texture that looks or feels like an orange (called peau d’orange). Ask if your GYN is familiar with inflammatory breast cancer, and tell her that you’re concerned and want to come in to rule it out.
There is more than one kind of breast cancer. Inflammatory breast cancer is the most aggressive form of breast cancer out there, and early detection is critical. It’s not usually detected by mammogram. It does not usually present with a lump. It may be overlooked with all of the changes that our breasts undergo during the years when we’re pregnant and/or nursing our little ones. It’s important not to miss this one.
Inflammatory breast cancer is detected by women and their doctors who notice a change in one of their breasts. If you notice a change, call your doctor today. Tell her about it. Tell her that you have a friend with this disease, and it’s trying to kill her. Now you know what I wish I had known before six weeks ago.
You don’t have to have a lump to have breast cancer.
P.S. Feel free to steal this post too. I’d be happy for anyone in the blogosphere to take it and put it on their site, no questions asked. Dress it up, dress it down, let it run around the place barefoot. I don’t care. But I want the word to get out. I don’t want another young mom — or old man — or anyone in between — to have to stare at this thing on their chest and wonder, is it mastitis? Is it a rash? Am I overreacting? This cancer moves FAST, and early detection and treatment is critical for survival.