Getting Diagnosed

Well, I was found anemic while in the hospital about a year ago for a heart procedure. Over the last year, I've had various blood tests and a colonoscopy to try to figure out where those red blood cells are going. Finally, about a month ago, my primary care physician noticed some abnormal protein levels in my blood. She sent me to a hematologist.

The hematologist ordered a bone scan, a bone density evaluation, a bone marrow biopsy, and more blood work, and ultimately diagnosed Waldenström's Macroglobulinemia. This was, in a way, good news; the initial indications could have meant multiple myeloma, which is an incurable blood cancer that killed my mother. What he didn't say was that it's a form of cancer. He told me that treatment would include an agent called Rituxan as well as chemotherapy, but he didn't use the "C" word.

Subsequent research on the Internet (cancer.gov, cancer.org, wikipedia) revealed that it's a very rare cancer - only about 1500 cases diagnosed per year in the US. Yikes, it's cancer. Incurable cancer. Average age of diagnosis is 63 years old, and average survival is 5-7 years. That sure scared me - but then I also read at iwmf.com (International Waldenström's Macroglobulinemia Foundation) that one is more likely to die WITH the disease than OF the disease. I'm still not sure what all this means. I'll be seeing the hematologist again in a few weeks, and will have a lot of questions for him.

Fortunately, it's a slow-moving (indolent) disease, and one doesn't have to jump right into treatment. This gives me some time to research it, understand it better, and prepare my questions for the next visit.

Meanwhile, given the rarity of the disease, I'm going to get a second opinion, and from someone who has as much experience as possible with it. My hematologist said that he sees a case about every six months, but I've got my doubts. If there are only 1500 per year in the country, that's about 30 per state, and he sees 2 of them? I guess it's possible, but it seems like more than his share. In any case, if he does see only 2 per year, he can't be that much of an expert on it.

The first place I looked for an expert was Memorial Sloan Kettering ("the best cancer care anywhere"). Surprisingly, they had only one doctor who listed it as a specialty. Eventually, I found Dr. Richard Furman, who heads a research center at Weill-Cornell Medical Center, and Dr. Steven Treon, at Dana Farber Cancer Institute in Boston. Treon is the Director of the Bing Center for Waldenström’s Research and an attending physician for medical oncology, at Dana-Farber Cancer Institute and Brigham and Women’s Hospital, in Boston, Massachusetts. He's got his own web site with the banner "Dedicated to the Discovery of the Cause and Cure of Waldenström’s Macroglobulinemia". I sent him an email (through a "Contact Me" link on his site) asking if he could recommend a specialist in my area, or if he could perhaps supervise my care from afar.