I promised I would write a letter to LLL and well…..I finally did it. Here it is:
Dear La Leche League,
I am the mother of three children. All were breastfed. The first two were breastfed well past the age of two. When my third child was about 10 months old I developed a plugged duct. As a Bradley Method Instructor I thought I knew the tricks to get it out. I massaged, put a warm compress on, took warm showers, ibuprofen, etc. When my plugged duct did not go away I sought help from LLL and other internet sources. My sister is a LLL leader and I have several friends who are LLL leaders so I also sought their counsel.
After a month or so I sought medical help. My family doctor agreed it looked like a plugged duct. Same things…..massage, compress, etc. After 6 weeks I called my midwife and she left a message with the nurse to try lecithin and echinacea. I tried this and thought it looked a bit better but by two months my breast was swollen, red, and hot. It had a rash, looked pitted and my nipple was inverting. I kept looking at web sites but I couldn’t figure out why my breast seemed to have a fever and I didn’t.
My husband finally told me I needed to get in to a doctor again. This time I insisted (I had called three times and been put off by my Ob/Gyn receptionists who kept asking if I had a fever). I finally saw a doctor at 4 pm, two months after I had first thought I had a plugged duct. A week later on February 3rd I was diagnosed with inflammatory breast cancer.
Inflammatory breast cancer will only affect 5-6% of breast cancer patients, but it is very dangerous and very deadly if not caught soon enough. I am lucky I only let it go for 2-3 months. After chemo and a double mastectomy I am cancer free. I will start radiation in a week. I have met many women who have not been so lucky. I am horrified when I read how many women think they have plugged ducts while breastfeeding or pregnant. Most women who get IBC will be either pregnant, breastfeeding or in menopause. But if a woman gets cancer before the age of 40 it is so much more aggressive. Catching it early is critical.
I realize this is a sensitive issue because in no way do I want to scare women from breastfeeding. I certainly thought I was at low risk because I breastfed! But I would ask that you consider including in your literature online, your publications and in the training of your leaders that a plugged duct should not last more than two weeks. I would strongly urge you to put the symptoms of IBC somewhere on your site and encourage women to seek medical attention if it lasts more than two weeks.
I am quite certain you would save lives if you did this. A woman who I blogged with recently passed away from IBC. She noticed a plugged duct when she was pregnant but waited till her son was 5 months old to seek medical attention. It was too late. It had spread to her upper lymph system. She had six children. You can read about punk rock mommy here.
LLL was a wonderful resource for me before I had children. I was considered a champion nurser by the nurses after the birth of my first child because we nursed so well! I loved going to meetings and require my Bradley students to attend meetings and read The Womanly Art of Breastfeeding. I recently donated on behalf of my sister who has assisted dozens of women on their breastfeeding journey. So of course LLL was the first place I looked for help.
Please continue to advocate on behalf of all women by sharing as much information as possible and making sure women have all the information they need to not only breastfeed healthy babies but live healthy lives themselves.