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Today’s Moderator:Dana Nolan, MS LMHC

Licensed Mental Health Counselor

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Managing the Challenges of a Rare

Cancer

Today’s Moderator:Dana Nolan, MS LMHC

Licensed Mental Health Counselor

What Qualifies as a Rare Disease?

The National Institutes of Health (NIH) classifies a disease as rare if it affects less than 200,000 people in the U.S.

The NIH considers malignant mesothelioma a rare disease.

Doctors diagnose about 3,000 new mesothelioma cases annually.

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How Is MesotheliomaDifferent from Other Cancers?

Most cancers form solid tumors that develop as a mass or cluster of malignant cells. Solid tumors are easier to remove with surgery or treat with radiation. Mesothelioma tumors are not easily removed by those means.

Mesothelioma can develop in the lining of the lungs (pleural), abdominal cavity (peritoneal), heart (pericardial) or testicles (testicular).

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Why Is Mesothelioma Rare?

Exposure to asbestos is the primary cause of mesothelioma.

Not everyone exposed to asbestos develops mesothelioma. Researchers believe genetic differences make some people more likely to develop the cancer after asbestos exposure.

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Mesothelioma vs. Other Cancers

The National Cancer Institute shows there are close to 14 million people currently living with a cancer diagnosis in the U.S.

Cancers of the breast, lung, colorectal and prostate comprise more than half of all cancers.

NOTE: Pleural mesothelioma is not included in the lung cancer statistics.

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New US Cancer Diagnoses

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Challenges of a Rare Cancer

Finding a cancer specialist with expertise in treating mesothelioma.

Long-distance traveling to a nonlocal specialistEducating your primary care team about your

diagnosis and treatmentEducating your family, friends, neighbors and

co-workers about your rare cancer

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Challenges of a Rare Cancer (cont.)

Finding others for emotional and practical support who share the same diagnosis

Fear that other common cancers get more attention and funding to find a cure

Feelings of isolationDifficulty finding specific information and

resources about mesothelioma

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Coping with a Rare Cancer

People newly diagnosed with mesothelioma search online for information about mesothelioma from sites such as Asbestos.com.

Mesothelioma patients and their caregivers learn about their diagnosis and treatment options, and they advocate for themselves when needed.

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Coping with a Rare Cancer (cont.)

Patients and caregivers regularly investigate clinical trials.

Research financial and insurance issues because sometimes patients or caregivers fight their insurance providers and appeal for coverage of their treatment costs.

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Resources

The National Organization of Rare Disorders developed this sample letter mesothelioma patients can use to fight an insurance denial. http://rarediseases.org/wp-content/uploads/2014/11/Sample-Complaint-Letter-to-State-Insurance-Commission.pdf

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Resources

Patient Advocate Foundation (www.patientadvocate.org) is another organization that helps patients, not just cancer patients, solve insurance and health care access problems.

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Contact Information

1-877-626-5916

(877) 626-5916

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