There are many resources available for people who have mantle cell lymphoma (MCL). Learning more about the condition can help you understand your treatment options and make informed decisions about your care. Reaching out for emotional and social support may also help you manage the condition more easily.
Read on to learn more about some of the resources available to you.
If you've been diagnosed with MCL, it's important to make an appointment with a specialist who can help you understand your treatment options and get the care you need. MCL is relatively rare, so some doctors may not be familiar with the newest treatment options. Ideally, it's best to meet with a lymphoma specialist.
Consider asking your primary care doctor or cancer care center if they can refer you to a lymphoma specialist.
The American Society of Clinical Oncology operates an online database you can use to find lymphoma specialists across the United States. The American Society of Hematology also has a searchable database, which includes hematologists with lymphoma expertise.
If there are no lymphoma specialists in your area, you might need to travel to visit one. If that's not an option, your local doctor might be able to consult with a specialist by e-mail, phone, or video conferencing.
There are many resources available to help you learn about treatment options and strategies for staying well with MCL. But sometimes, it can be challenging to know which resources are credible and accurate.
For reliable information:
The cost of treatment varies widely, depending on your treatment plan, where you receive treatment, and any health insurance you might have.
To manage the costs of your care, it might help to:
You can find more information and financial support resources through the following organizations:
Managing MCL can be stressful. If you find yourself struggling with frequent feelings of stress, anxiety, anger, sadness, or hopelessness, talk to your doctor. They may refer you to a mental health specialist for support.
Some patient organizations also offer counselling services. For example, call 800-813-4673 or email info@cancercare.org to speak with a trained counselor through Cancer Care's Hopeline.
You might also find it comforting to connect with other people who have faced similar experiences. For example, it might help to:
New treatments have helped to prolong life for many people with MCL. But eventually, the disease tends to progress or return. The Leukemia & Lymphoma Society reports the median overall survival for people diagnosed with MCL is five to seven years.
Many people choose to plan ahead for palliative care, end-of-life decisions, and estate matters. It's important to remember that planning ahead doesn't mean you're giving up on treatment. Instead, it's one of many ways you can ensure that you have an active role in decision-making about all aspects of your care and life.
You may choose to:
If you've been diagnosed with MCL, you can access resources to help meet your support needs. Talk to your doctor or cancer care center, or connect with a credible cancer organization, to find resources that can help you.