Mesothelioma Resources

by Dr. Michael Milano

Each year in the United States, approximately 2000 new people will be diagnosed with mesothelioma (1). Unfortunately, because of the complexity of the disease, as well as the various forms of treatment, most people leave their doctor’s office with more questions than answers. Luckily, there is a wealth of information on the subject available in books and on the Internet. This article is by no means an exhaustive list of resources but is meant as an introduction to the various sources available. The most important source of information, however, remains your doctor. The field of medicine is constantly growing and in the end only your doctor can provide you with the most up to date information and facts about your condition.

Internet Resources

Just typing the word “mesothelioma” into the search column of your web browser will provide you with hundreds of websites providing information about mesothelioma. It can be difficult to separate the good from the bad, therefore we will only discuss websites run by government and scientific agencies.

National Cancer Institute

Perhaps the best source for general information about the disease is the National Cancer Institute. Its web site can be reached at www.cancer.gov (2). The web site is a treasure trove of information. It is quite possible that most questions can be answered by this website alone.

The site has a section specifically about mesothelioma with tons of facts about the disease, as well as sources for further study. All information is available in English and Spanish. Here you can find a simple explanation about the disease process, the type of cells involved, and how it is caused. You can also access treatment options and learn more about the link between asbestos exposure and the disease. If you are interested in learning about experimental treatments and want to participate in a clinical trial, you can download the NCI handbook “Taking Part in Clinical Trials: What Cancer Patients Need to Know” (2).

After learning about the disease, you can then access information about support groups, financial aid, and other issues such as advance directives (living wills, etc.)
Also helpful is a lengthy section on end-of-life issues and sources of emotional support for family members.

The NCI’s Cancer Information Service can also be accessed from this site. This service is meant to provide a link to the public about clinical trials and research and explain current research results in a clear and understandable manner for those without a scientific background.

Finally, the NCI provides a personalized service where patients can call and ask questions specific to their personal situation. This unique program can be reached via the NCI website or by calling 1-800-4-CANCER (2).

Other Information Sources

Other than the National Cancer Institute, there are several other organizations with equally helpful and informative websites.

The American Cancer Society’s web page can be accessed at www.cancer.org. Here, you can get information about cancer in general as well as find a comprehensive list of links dealing with mesothelioma specifically. Also the site provides information about Hope Lodges, which are free, temporary housing centers for cancer patients who must travel far from home for their treatment. These lodgings are located in several states and the ACS provides information on their location as well as contact information. Patients and family can also access these services and information by calling 1-800-ACS-2345 (3).

Medline Plus is a service provided by the National Institutes of Health (NIH), and the U.S. Library of Medicine. The website address is www.medlineplus.gov (4). There is a ton of information available here as well. Articles, links, a dictionary and encyclopedia of medical topics as well as videos of various surgeries are available. The topics range from general health issues to drugs, treatments, and patient support. Cancer in general and mesothelioma specifically can be viewed. You can also learn about the latest research articles or find a doctor near you.

Thankfully, the burden is not on the patient alone to understand the various aspects of mesothelioma and cancer. The NCI Cancer Centers Program provides a list of certified cancer centers where patients can go for all their needs. These centers have been officially endorsed by the National Cancer Institute as being leaders in the field of cancer research, treatment, and prevention (1). The list can found at the NCI’s website or at www.cancercenters.cancer.gov.

Emotional and Financial Support
Obviously it is not enough to provide information on the scientific aspects of cancer and mesothelioma. Fortunately, there are many generous organizations that provide emotional and financial support, as well as hope for cancer patients.

Cancer Care is an organization that provides online or telephone counseling for cancer patients by trained social workers. They also have offices in New York City, New Jersey, Long Island, and Connecticut, where a live, person-to-person counseling session can be arranged. They can be reached through their website at www.cancercare.org or by telephone at 1-800-813-4673 (5).

The National Patient Travel Center is an organization that provides assistance for patients who must travel long distances in order to receive specialized care (6). Their HELPLINE program is available twenty-four hours a day, seven days a week. Patients can receive a free initial consultation to determine if they are eligible for assistance by visiting www.patienttravel.org or calling 1-800-296-1217.

A very unique service is provided by the Air Charity Network (7). This organization provides free air transportation to specialized health care facilities. The flight is completely free of charge for the patient and is provided entirely by volunteer pilots. They can be reached at www.aircharitynetwork.org or by calling 1-877-621-7177.

For those wishing to speak to other patients, the American Lung Association has a lung disease message board where patients can post their questions or stories and read responses from other patients (8). The link to the board is provided on the groups website at www.lungusa.org.

Legal Resources

It is beyond the scope of this article to provide legal counsel. However, it is well established that mesothelioma is usually a rare disorder and that workers exposed to asbestos have a much higher risk of developing mesothelioma (1). A major medical textbook acknowledges “Since epidemiological studies have shown that more than 80% of mesothelioma may be associated with asbestos exposure, documented mesothelioma in a worker with occupational exposure to asbestos may be compensable in many parts of the United States.” (9)

Asbestos is listed as a known carcinogen (9). After a review of the literature and epidemiological studies, the International Agency for Research on Cancer (www.iarc.fr) established a list of over 60 substances that were “probably or definitely” carcinogenic (9,10). The Environmental Protection Agency provides further information about the laws and regulations regarding asbestos on their website, available at www.epa.gov/asbestos (11).

If, after reading all of the above, you feel that you may be entitled to monetary compensation, visit the American Bar Association’s website at AmericanBarAssociation.org or Lawyers.com to find help in locating an attorney (12,13).

As mentioned in the beginning, there are tons of sources of information, support, and assistance for patients with mesothelioma. It is hoped that this list provides you with a few useful places to start. However, there are many other websites, books, and groups available. What is most important to realize is that you are not alone. Do not be afraid to ask for help. Most importantly, if there is something you do not understand, speak with your doctor. Good luck, and never give up hope.