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Finding Support for Mantle Cell Lymphoma

A diagnosis of mantle cell lymphoma (MCL) can shake up your daily routines and your emotions, as well as your physical health. You might feel afraid, sad, angry, or lonely – or all these things at once. But you don’t have to go through it alone. Support from others can help you deal with your challenges and feel more like your normal self.

Support can come in many forms. It could be:

  • A friend who comforts you
  • Family members who pitch in with household chores
  • A mental health professional who helps you come to terms with your diagnosis
  • Financial aid that covers some of your bills

How to Get Support From Your Loved Ones

Some people with cancer think they need to appear strong and positive to protect their loved ones. And you may need some time to process a MCL diagnosis before you’re ready to talk about it. But opening up to those you trust strengthens your relationships and helps you sort out the emotions you’re dealing with.

Because of their own fears, some friends and family members may be uncomfortable bringing up your condition. So tell them if you’d like to talk about it.

When people ask what they can do to help, be honest and specific about what you’d like. That could be anything from companionship to a ride to the doctor’s office to help figuring out your medical bills.

You might sometimes feel frustrated when people around you say unhelpful things or don’t seem to grasp what you’re going through. That’s normal and understandable. And that’s when it can help to talk to others who’ve been in your shoes.

How to Get Support From Others With Cancer

Because MCL is a rare type of blood cancer that few people are familiar with, it’s common for those who have it to feel isolated. Because it’s often hard to treat, it poses some particular challenges for those who have it. 

But other people who’ve dealt with MCL get it. Their experiences can help you know what to expect. You may feel more comfortable talking openly with them than with your family members or friends.

Support groups are a great way to link up with others who have MCL or other cancers. Some meet in person, while others gather online. Your hospital or cancer care center may offer a group or be able to refer you to one. You can also find support groups via:

  • The Leukemia and Lymphoma Society
  • The Lymphoma Research Foundation
  • The Cancer Care Network
  • The American Cancer Society 

The Lymphoma Research Foundation also offers a peer support program called the Lymphoma Support Network. It connects people with cancer with volunteers who’ve had similar experiences. 

 

How to Find a Mental Health Professional

Sometimes, talking to loved ones or peers isn’t enough. A counselor, therapist, or social worker can help you come to grips with the strong emotions a MCL diagnosis can bring. They can also teach you strategies to deal with those feelings and other challenges you face.

If you’ve been feeling sad or anxious for a long time, or if these emotions get in the way of your daily life, ask your doctor or cancer center to refer you to a mental health professional. If possible, chose one who specializes in treating people with cancer.

 If you need help finding mental health services, call the Leukemia and Lymphoma Society at (800) 955-4572.

How to Find Financial Support

If you’re concerned about paying for your care, tell your health care team. They can explain what your costs will be and work to keep them down. For hospital bills, a financial counselor or social worker can help you find ways to afford treatment, including payment plans and aid from nonprofit groups.

If you have health insurance, find out how much of your care your plan will pay for. Contact your insurer and speak to a benefits coordinator. They can tell you which tests, treatments, and specialist visits are covered and to what extent.

Older people, those who are disabled, and those with low incomes may be eligible for financial benefits from U.S. government programs like Medicare, Medicaid, and Social Security. Some states also offer financial programs to help people with cancer.

For people who are uninsured or underinsured, most drug manufacturers have patient assistance programs that provide low-cost or free medications. Ask your doctor’s office or check the website of the company that makes your medication. Some drug companies also offer rebate or discount programs to help with treatment costs.

Nonprofit groups like the Lymphoma Research Foundation, Leukemia and Lymphoma Society, and Cancer Care have programs to help with things like insurance co-pays and nonmedical expenses. For example, the American Cancer Society offers free or low-cost rides, housing, and other services.

Help With End-of-Life Planning

If your cancer doesn’t stay in remission, you may need support as you plan for end-of-life issues.

You can decide whether you want to take an active role in decisions about your care or leave them to your doctors and loved ones. But a frank discussion with your doctor will help you feel better prepared and ensure your wishes are carried out. Your doctor or cancer center can give you information about advance directives, hospice care, and other end-of-life services.

Talk with your loved ones about any wishes you have for your medical care, funeral services, and how you want your body handled. You may want to have conversations with or write letters to family members and friends about your feelings for them or any unresolved issues. Many people with cancer get comfort from talking with a religious or spiritual advisor.

An attorney can help you draw up a will and establish advance health care directives such as a health care power of attorney. If you need help paying for legal services, your state’s bar association can point you to local legal aid options.

Show Sources

SOURCES:

Weill Cornell Medicine: “Overcoming Cancer: The Importance of a Strong Support Network.”

National Cancer Institute: “Emotions and Cancer,” “Support for People With Cancer: Taking Time,” “Managing Costs and Medical Information,” “Planning the Transition to End-of-Life Care in Advanced Cancer.”

American Cancer Society: “Psychosocial Support Options for People with Cancer,” “When Someone You Know Has Cancer,” “If You Have Problems Paying a Medical Bill,” “Economic Impact of Cancer,” “ACS Patient Programs and Services,” “Nearing the End of Life.”

Lymphoma Action: “The emotional impact of living with lymphoma.”

Cancer Research UK: “Coping.”

Cleveland Clinic: “Mantle Cell Lymphoma.”

Lymphoma Research Foundation: “Lymphoma Support Network.”

Cancer Care: “Sources of Financial Assistance.”

Leukemia & Lymphoma Society: “Support Resources.”

American Society of Clinical Oncology: “Completing Your Life.”

National Institute on Aging: “Getting Your Affairs in Order.”

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