Five Tips for Facing a Rare Cancer

rare cancer, becky sail

By Becky Sail At age 22, I was diagnosed with a rare sarcoma called aggressive angiomyxoma – say that 10 times fast. When my parents and I got the news we asked the doctor, “Is it cancer?” He responded, “That is a complicated question.” He said he had never seen it before and I needed to get to New York or Boston – there were only 250 reported cases in the world, ever. Fortunately, my job relocated me to Boston and I was able to choose Dana-Farber for my care, which I am so grateful for. I have always faced …

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What Is Waldenström’s Macroglobulinemia?

Waldenström's Macroglobulinemia

Waldenström’s macroglobulinemia (Waldenström’s) is a slow-growing type of non-Hodgkin lymphoma marked by abnormal levels of an antibody called macroglobulin (IgM). Also known as lymphoplasmacytic lymphoma, Waldenström’s mostly forms in the bone marrow and can hinder the growth of normal blood cells, which can lead to anemia as well as a weakened immune system. Waldenström’s sometimes does not produce symptoms (asymptomatic), and is often found during a blood test. However, the increased amount of IgM produced by Waldenström’s cells can cause excess bleeding as well as problems with vision. Other symptoms can include enlarged liver, spleen, or lymph nodes, headache, fatigue, …

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Doctor/patient team fight rare cancer

By Karen Lee Sobol I recently learned that the word “patient” shares a Latin root with the word “compassion.” Any one of us can become a patient, for a number of reasons. For me, hearing a diagnosis of Waldenström’s macroglobulinemia flipped a switch. I became a patient in a big way.