Multiple Myeloma: Coping With a Rare Cancer Diagnosis

Multiple Myeloma: Coping With a Rare Cancer Diagnosis

Where to find information, support, and healthcare providers who specialize in the treatment of this rare blood cancer.

Being diagnosed with any cancer is not easy. Being diagnosed with a rare cancer, such as multiple myeloma, can often come with a few additional challenges.

Multiple myeloma (MM) occurs in the bone marrow, when cells called plasma cells become cancerous. Normal plasma cells make antibodies that help the body fight disease and infection. Cancerous plasma cells can form tumors in the bones, produce abnormal proteins, and block the production of normal white and red blood cells, leading to complications like anemia, infections, and damage to the bones.

MM is considered a rare disease. It’s estimated that there are approximately 30,000 new cases of this type of cancer in the U.S. in a given year. Comparatively, lung cancer and breast cancer see hundreds of thousands of new cases every year. Consequently, it is often easier to find information about lung cancer and breast cancer, while finding information about a disease like MM poses more of a challenge.

Below are some tips for patients and caregivers who are living with MM.

Do your research
Patients are encouraged to learn more about their diagnosis. Knowing more about a condition can be helpful for a number of reasons. It can better prepare you for talking to a healthcare provider. It can take away some of the uncertainty that comes with a cancer diagnosis. It can help you recognize symptoms and complications. It can better prepare you to understand your treatment options and make treatment decisions.

While there is still much that healthcare researchers do not know about MM, technology has given patients access to nearly all the information that is available, if they know where to look. A useful starting point for researching MM is the Multiple Myeloma Research Foundation, which offers information on symptoms, diagnosis, current therapies, emerging treatments, and resources for patients.

Connect with others
The only people who truly know what it is like to live with a rare disease like MM are those who have also been diagnosed with it. Connecting with other patients through support groups is encouraged. Support groups offer a chance to share experiences and feel less isolated. They can be a valuable source of advice and information, helping you uncover resources and tips for dealing with the challenges of living with cancer. They also offer an opportunity to help others. Contact your local hospital or cancer center about local support groups, or start your search with MM advocacy organizations like the International Myeloma Foundation. The Multiple Myeloma Research Foundation also has a directory of support groups.

Find the right healthcare provider
Rare diseases pose challenges to healthcare providers as well as patients. Not every oncologist or hematologist will have experience in treating MM, and finding a healthcare provider who specializes in MM can have a major impact on treatment. There are over a dozen therapies approved for the treatment of MM, and treatment is very individualized, taking into account a patient’s age, symptoms, medical history, and many other important factors.

Questions you will want to ask a prospective healthcare provider include:

  • How many patients with multiple myeloma have you treated?
  • How many multiple myeloma patients do you treat in a year?
  • What diagnostic tests will be used?
  • What are your choices for first-line therapies?
  • What are your choices for second-line therapies?
  • What steps do we take if the cancer does not respond to treatment?

There are resources to help you find a specialist. The Multiple Myeloma Research Foundation has a list of treatment centers that treat MM on their website.

Medically reviewed in July 2019.

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