By Dr. Tom Hoffmann

IWMF Vice Chair for Research

As we all know, very few doctors are aware of Waldenstrom macroglobulinemia (WM), much less know about the treatments for it. When primary care physicians finish their training after four years of medical school plus 2-4 years of a family practice residency, they may not have heard even once about WM. The next level are doctors in internal medicine. They also know little to nothing about WM after 7-8 years of training. Even an oncologist who has heard about WM in his training may have never seen a patient or be able to manage the work-up and treatment.

This is a terrible problem for someone who is newly diagnosed with WM who goes to a family physician with his symptoms. The physician has probably never seen a WM patient and doesn’t order the proper blood tests. He may say “let’s give it a few months.” If he remembered WM from medical school, he might say that you will die in 2-5 years. That was accurate in the 1990s and continued to be used for a decade. Doctors cannot keep up with everything about every disease, especially rare diseases. It is out of their realm.

In time, a patient will be sent to see a local oncologist. The oncologist may not have ever seen WM either. I went to the American Society of Hematology medical meeting last year, which more than 35,000 doctors, mostly oncologists, attended. One of the discussions was in a room full of thousands of oncologists, with others standing in the back. It was about breast cancer. Next was a WM discussion; only 35 people were in the room.

The IWMF is doing as much as possible to get the word out to all doctors and patients. We have multiple publications to help patients, nurses, and doctors at. We have even mailed hundreds of these to doctors and nurses. But the problem continues because we are one of more than 300 rare cancers. Nobody can remember them all.

The IWMF has a list of WM expert doctors on its website. These doctors see many WM patients, have performed WM research projects, specialize in WM, and are used for second opinions. There are many in the country but not in all states. This list can be accessed in the IWMF Directory of WM Physicians.

As I mentioned, finding a local oncologist who is familiar with WM is a big problem for newly diagnosed patients. While they might have gotten a diagnosis, they still will need a local oncologist for ongoing care. The IWMF cannot reach all of them, and they may flounder with their non-WM doctors. So they need to be proactive in asking a potential oncologist several questions:

  1. How many WM patients do you see per year?
  2. Will you mind if I get a second opinion from time to time from a WM expert?
  3. Will you follow the expert’s advice and/or use the NCCN clinical guidelines for treating my WM?

It is also important that a local oncologist is willing to answer questions, offer explanations, and be open to discussions about treatments and other associated medical issues. While these precautions might not guarantee finding an oncologist who will exactly fit their needs, it is a good place for newly diagnosed patients to start. Locating a nearby IWMF support group could also be helpful, for sharing information about local resources among members is a good way to learn who the doctors are and what options are available in the area.