I’ve started a page on facebook specifically for women who were diagnosed with Inflammatory Breast Cancer while pregnant or nursing and who were either misdiagnosed, put off treatment, thought they had a plugged duct or mastitis. I’m doing this so I can connect with other women who went through this experience and hopefully in the very near future I’m hoping to start an informational web site for women who have mastitis that won’t go away…and need to know the possibilty is there. I had never heard of IBC. I don’t want to “freak out” breast feeding moms but at the same time I know IBC is very fast spreading and information and treatment early is key to survival. So if you know of someone who was diagnosed with IBC when they were pregnant or nursing, please let them know about this facebook page
Clergygirl, I don’t do facebook, but definitely count me in your stats — I was nursing, and my baby found my cancer. He refused to nurse on the cancerous side … we found out later that it’s called Goldschmidt’s sign, and it’s a valid way to find out about cancer, before there are other signs.
If you have the energy, it is important to spread this information among people who work/volunteer in the field — lactation consultants, La Leche League leaders, and pediatrician.
My friend did not have IBC, but she did have cancer. All the experts assured her she was fine and that not all baby’s nurse on both sides. By the time she was diagnosed, she was stage 4.
I’d really like to do that RivKa, I’ve actually written LLL and some other lactation resources and they don’t respond! I think they may be afraid women won’t breastfeed if they think they might get cancer….or it might freak a mother out enough to wean early/quickly. I don’t totally know where I’m going with this but I feel like I need to do something! And WhyMommy….the queen of blogging, fearless leader….not on facebook…lol! You are definately in my plans as I pusue this.
I have been poking around looking for more information about IBC. I went to the doctor because I had a sudden enlargement of my breasts and they hurt like nothing I have ever felt before. I had the itchyness but I thought that was dry skin. I also kept having a feeling like I was lactating. My OB sent me on to a surgeon. I saw her and it was the worst dr visit of my life. I feel like she blew me off but that is another story. She said it was “probably” hormones and prescribed Vitamin E and a water pill. My breasts are smaller (not back to normal) now but I still have shooting/stinging pains and I can feel something like a thick disk behind my nipple area on both breasts. I have also noticed that my nipples are just slightly pointing outward (that new in the past few days) Did any of you have anything like this??? Everything I am reading says that there is no pain with breast cancer???? I just know that mine are not the same as they were before…
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