What to do if you are diagnosed with mantle cell lymphoma

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By Michael Wang, M.D., associate professor, Department of Lymphoma/Myeloma

120807MCL.JPGFirst, don't panic
Due to recent progress in treatment, mantle cell lymphoma (MCL) patients live for many years with a good quality of life. While a diagnosis of cancer can be frightening, it's important to stay calm so that you can evaluate all of your options. Here are some of the first steps you should take after being diagnosed with MCL.

Find an expert in MCL

Because mantle cell lymphoma is a rare disease, the key is to find an expert oncologist who specializes in the treatment of MCL. In the Lymphoma and Myeloma Clinic at MD Anderson, we have a group of experts who have studied and treated MCL for many years. It's important to keep in mind that our oncologists will work in collaboration with your home team to care for you.

Have the right tests done
Once you have an initial diagnosis of MCL, these are the first three steps that should be taken by your oncologist.

  1. Have an expert pathologist confirm the diagnosis -- this is important because there are many types of lymphoma. Different diagnoses lead to different treatments and prognoses. 
  2. Once you have an accurate diagnosis, your oncologist should perform tests to accurately determine the stage of the disease. 
  3. Review all of your options with your oncologist and ask for a second opinion. It's important to be comfortable with your final treatment decision. A second opinion can help you feel you've thoroughly evaluated all of your options.

Because patients with MCL can live for many years, you and your physician should develop a long-term strategic plan. The treatment plan should involve a series of well-planned options that will act as a safety net; there's not just one treatment or treatment plan.

Keep lines of communication open

Stay informed about your diagnosis and treatment. Take notes during your visits with your oncologist and keep copies of all of your medical records. Most importantly, communicate with your oncologist about any side effects or difficulties you're having with the treatment.

Recent and rapid progress in mantle cell lymphoma

Many novel therapies are being tested in MCL and have shown promising results in early clinical trials. A few good examples of these are non-chemotherapy, biologic agents including ibrutinib (Btk inhibitor, also called PCI-32765) and lenalidomide (Revlimid). Clinical trials with these and other agents are ongoing at MD Anderson.

To learn more about clinical trials for MCL, contact the Department of Lymphoma/Myeloma through Michael Wang, M.D. We look forward to sharing these advances with you.

Mantle cell lymphoma: a non-Hodgkin's lymphoma (podcast)

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