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FAQs—Support and Resources

It is important for mesothelioma patients and their families to know that they are not in this battle alone. There are many resources available to help with everything from support groups to hospice care. We have assembled this list of commonly asked questions to explain the different kinds of help that are available and how to get started.

How do I find a support group?

A good place to start is by asking your medical team for information on local support groups. Hospitals often host these associations, as do religious organizations and community groups. Since mesothelioma is a rare disease, it may not be possible to find a group exclusively dedicated to mesothelioma, but you’re sure to find general cancer support groups. These meetings are often held in hospitals or at community spaces. For patients who have difficulty leaving the comfort of home, an online support group could be a good alternative. The American Cancer Society offers a free, online search to help you find support groups of all types in your area.

Can family and friends participate in support groups?

Every support group is different. Some are limited to patients undergoing treatment, while others are open to friends and family members. If you’d like to have family members attend meetings, check in with the group facilitator to be sure it is okay.

What is hospice care?

Hospice is compassionate medical care for patients who are at the end stage of life. Hospice offers a team approach to medical care and pain management. Equally important, the hospice team provides emotional support to both the patient and the family. Hospice focuses not on death, but on life, helping patients live out their final days in comfort and with dignity. Hospice care can take place in a hospital, a hospice center, or a nursing home, or in a patient’s own home surrounded by family and friends.

What services are provided by hospice?

Hospice care is a team approach with a combination of doctors, family members, and other caregivers working with hospice workers to manage the patient’s pain and symptoms, administer medicines, and provide any necessary medical supplies. Hospice also coaches the family on how to care for the patient, helps the patient with the emotional and spiritual aspects of dying, and offers bereavement counseling and care to family members.

Can grief counseling help my family members cope?

For those friends and family members left behind, the loss of a loved one from mesothelioma is understandably painful. There are many resources available to help people cope with the profound loss of a loved one. Ask a medical professional to recommend a grief counselor or support group. These counselors are trained professionals who help people understand and manage the pain and anger and sense of isolation that can come from losing someone to mesothelioma. As with cancer support groups, many grief-counseling groups meet weekly in hospitals, at churches, and in community centers, among other places. There are also online chat rooms and forums dedicated to navigating the grief process. For those who prefer to grieve alone, there are numerous books on the subject, including:

  • On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss by Elisabeth Kubler-Ross and David Kessler
  • Healing After Loss (Daily Meditations) by Martha W. Hickman

More information can be found through the American Cancer Society and CancerCare.

How do I pay for my mesothelioma treatment?

Mesothelioma treatment can be lengthy and expensive. While there is no question that it can be a drain on financial resources, there are options to help pay for cancer care. Private health insurance, as well as Medicare and Medicaid, will usually cover some portion of treatment costs, but will not necessarily cover all expenses. Contact your health insurance company to find out what you can expect from your particular health insurance coverage. If you don’t have private health insurance, there are government programs to help patients with lower incomes, and additional assistance may be available through the Veterans Administration. You may also choose to pursue a legal claim to learn what options may be available to help you cover your medical expenses.

Where can I find the most experienced mesothelioma doctors?

Mesothelioma is a rare disease, with only about 3,200 new cases diagnosed in the U.S. each year. Unless you happen to live in one of the major cities with a large hospital, there is a good chance the doctors in your town will not have experience in treating mesothelioma. Because the disease is so complex, you’ll want to be sure to get the best possible care from a medical team that is completely up to speed on the specifics of this disease. Check out the National Cancer Institute’s designated cancer centers. These centers are distinguished by their scientific excellence and use of a wide range of cutting-edge research to treat cancer.