[DanL]

Catherine,

MDS is really funny that way. You tell people that you have MDS, they have not heard about it, and because in many cases you look fine, it is assumed that it is not very serious. If you described it as cancer or leukemia, then it changes the view quickly.

Here's what I have found: the Leukemia and Lymphoma pamphlet on MDS states pretty clearly that MDS is a diagnosis of cancer. This makes sense since stem cells that are dysfunctional create dysfunctional blood cells.

One definition includes "involving unregulated cell growth. In cancer, cells divide and grow uncontrollably, forming malignant tumors, and invade nearby parts of the body." MDS does not typically invade the nearby parts of the body, but neither does AML or many other leukemias.

Many of the hematologists and publications consider it cancer as well. The challenge and confusion comes from the way that people are informed about the disease which is variably described as a bone marrow failure disease or a pre-leukemia. This may be because of the observation that only about 25-30% of MDS cases evolve to outright leukemia.

Ultimately, I am not sure that it really matters whether it is called cancer or something else. It is a serious disease that affects quality of life to varying extents and may lead to leukemia or other life-threatening complications.

Hope this helps.