Accessing the resources you need
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:
- Ask your doctor or cancer care center for more information about MCL.
- Browse the MCL section of the Lymphoma Research Foundation’s website or contact its helpline at 800-500-9976 or firstname.lastname@example.org.
- Contact an information specialist through the Leukemia & Lymphoma Society by calling 800-955-4572, e-mailing infocenter@LLS.org, or using the organization’s online chat service.
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:
- Ask your doctor or cancer care center if they accept your health insurance. If you don’t have insurance or you can’t afford treatment, ask them if they can prescribe more affordable treatment or connect you to financial support services.
- Contact your health insurance provider to learn if your medical appointments, tests, and treatments are covered. They can help you learn how much you will need to pay in monthly premiums, annual deductibles, and coinsurance or copay charges.
- Contact the manufacturer of medications that you take to learn if they offer patient rebate or subsidy programs. You might be eligible for a discount.
- Consider applying to a clinical trial to receive experimental treatments for free. Your doctor can help you learn about the potential benefits and risks of taking part in a trial.
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.
You might also find it comforting to connect with other people who have faced similar experiences. For example, it might help to:
- Ask your doctor or cancer care center if there are local support groups for people living with lymphoma.
- Use American Cancer Society’s online database to find local support programs.
- Visit the Leukemia & Lymphoma Society website to register for an online chat, find a local support group, or access one-to-one peer support.
- Join the Lymphoma Support Network to connect with a peer online or by phone.
- Sign up for an online support group through Cancer Care.
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:
- Ask your doctor or cancer care center for more information about end-of-life planning and care services.
- Visit the National Hospice and Palliative Care Organization’s CaringInfo website to learn about hospice programs and other palliative care services.
- Meet with a lawyer or other legal professional to set up an advance health care directive. This document will communicate your treatment wishes to your doctor if you reach a point when you can no longer advocate for yourself.
- Meet with a legal professional to establish a will or trust. These estate planning tools determine what will happen to your property.
- Talk to your family about your end-of-life and after-life wishes, including any preferences you have for how your body is managed. Some people also choose to write letters to loved ones and take time for any important conversations they’ve wanted to have.
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.