This is an open letter from one of our friends, living with IBC. She also guest blogs for the IBC Network. Also on a side note, about 40% of women diagnosed with IBC are also triple negative. It is time to talk.
Dear Ms. Lunden,
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I was thrilled to see your cover photo on PEOPLE Magazine today. Your courage in showing your hairless head is much appreciated by those of us who have gone through the same experience. I know many women who have tolerated highly toxic chemotherapy, radiation and surgery to rid them of this killer. Bringing attention to triple negative breast cancer is also wonderful, as many are not aware that cancer is typed by hormone status and that TN is particularly aggressive.
I watched a report on your story on NBC NEWS. I recognized your “warrior mode” feelings that followed your diagnosis. I too became a warrior after my initial diagnosis of LCIS in the left breast back in late 2007. Due to a strong family history of breast cancer, I choose a bilateral mastectomy and immediate reconstruction.
One of the commentators noted that if “America’s mom” could get through this then we can too. Just 15 months after my surgery, I was diagnosed with Inflammatory Breast Cancer, Stage IV. Since then, I have been bald twice and am facing a third round of hairlessness. I am going to be starting my sixth chemotherapy medication and have had radiation twice in the past.
I am not TN, but HER2+++, another aggressive form of aggressive IBC, a little known variant of BC that occurs in the lymph system and is never diagnosed earlier than Stage III or IV. It is not visible on a mammogram and often does not present with a “lump”. Unfortunately, the pink “awareness” campaigns continue to publicize early detection as the ultimate cure. This is false statistically as well as in reality. Those with early stage BC will recur at a rate of 30%. And then there are those of us who were late stage from the start, in spite of yearly mammograms and doctor and self-exams.
Many of us start as warriors, and while we continue to fight, it is often a fight to the death: of us, not cancer. With IBC, those who are TN often die quicker. There is no specific treatment for TN BC, and the common chemotherapies fail this group quickly. Those of us who are IBC or BC with metastases from the start are ignored in educational and awareness campaigns. The traditional pink groups give less funding to metastatic research. We die sooner and often at a younger age. We suffer from the damages of treatment, including neuropathy, nerve damage, lymphedema, neurological damage and gastrointestinal disorders. Debilitating fatigue and yes, frequent hairlessness are common.
I would only ask that when you use this marvelous opportunity to share your experience, that you make the plight of IBC and BC METS woman apparent. Stage IV research needs more attention and funding. Please remember us in your journey.
Kathleen K. Strosser