Updated on June 14, 2013
Being told that you or a loved one has an asbestos-related disease can often bring about an overwhelming feeling of isolation and grief. But you are far from alone. ADAO is a community of others who have gone through similar experiences and offer their help. Furthermore, the organization has organized a list of numerous medical and supportive resources available to you and your family.
If you have just been diagnosed and want to learn more, ADAO suggests your first visit be to the Asbestos page at the Agency for Toxic Substances website from the Centers for Disease Control and Prevention (CDC). There, you can find multiple sources of information and help, including the particularly important “Health Effects” section.
For more on mesothelioma, ADAO also recommends Cure magazine’s online book “Understanding Mesothelioma” and the National Cancer Institute (NCI) website as excellent resources for accessing information regarding treatment centers, physicians, and clinical trials. ADAO has also compiled a new list of leading medical centers that offer treatment for asbestos-related disease to help you get started.
ADAO urges that you be a part of the community and reach out for support. This can often be one of the most important steps in your treatment. Visit the ADAO Medical Resources page to find out about online resources such as the Mesothelioma Applied Research Foundation (MARF) and the Association of Cancer Online Resources, Inc. (ACOR) where you can find further support from others living with asbestos-related disease.
How do I find treatment centers?
If you have been diagnosed with cancer, finding a doctor and treatment facility for your cancer care is an important step to getting the best treatment possible. Although the health care system is complex, resources are available to guide you in finding a doctor, getting a second opinion, and choosing a treatment facility. Follow the link above to the NCI Cancer Facts Web site for suggestions and information resources to help you with these important decisions.
Support, Education, and Hope.
Resources and support for the patients, caregivers, families, and friends:
National Cancer Institute (NCI)
The National Cancer Institute (NCI) is part of the National Institutes of Health (NIH), which is one of 11 agencies that compose the Department of Health and Human Services (HHS). The NCI, established under the National Cancer Institute Act of 1937, is the Federal Government’s principal agency for cancer research and training. The National Cancer Act of 1971 broadened the scope and responsibilities of the NCI and created the National Cancer Program. Over the years, legislative amendments have maintained the NCI authorities and responsibilities and added new information dissemination mandates as well as a requirement to assess the incorporation of state-of-the-art cancer treatments into clinical practice.
Search NCI’s list of 8,000+ clinical trials now accepting participants, or use more search options to search the set of 19,000+ clinical trials that are no longer recruiting.
Mesothelioma Applied Research Foundation
The Mesothelioma Applied Research Foundation is the nonprofit collaboration of patients and families, physicians, advocates, and researchers dedicated to eradicating the life-ending and vicious effects of mesothelioma. We believe in a cure for meso. Given the human toll of suffering the disease causes, the compassion and energy of the meso community, the moral, legal and economic aspects of asbestos, and the benefits of meso research to cancer research generally, we believe that the resources to accomplish this cure are available and must be mobilized.
Association of Cancer Online Resources, Inc. (ACOR)
The ACOR lists are a group of free, unmoderated discussion lists for patients, family, friends, researchers, and physicians, to discuss clinical and non-clinical issues and advances pertaining to all forms of cancer. This includes information about patient experiences, psychosocial issues, new research, clinical trials, and discussions of current treatment practices as well as alternative treatments. Join the ACOR Mesothelioma Support & Information
NOTE: ”I have been a member of ACOR since Alan’s diagnosis in June 2003. ACOR not only saved Alan’s life, but mine. ACOR gave me hope and knowledge that could not be found anywhere during a time of crisis, confusion and bewilderment. – Linda Reinstein (2004)
Cancer Support Community
The Cancer Support Community is an international non-profit dedicated to providing support, education and hope to people affected by cancer. Likely the largest employer of psychosocial oncology mental health professionals in the United States, CSC offers a menu of personalized services and education for all people affected by cancer. Its global network brings the highest quality cancer support to the millions of people touched by cancer. These support services are available through a network of professionally-led community-based centers, hospitals, community oncology practices and online, so that no one has to face cancer alone.
Caring Bridge is as an online space where you can connect, share news, and receive support. It’s your very own health social network, coming together on your personalized website. And thanks to those who donate, we are available 24/7 to anyone, anywhere, at no cost.
Cancer Survival Toolbox®
The Cancer Survival Toolbox® is a free audio program designed to help cancer survivors and caregivers develop the practical tools to deal with the diagnosis, treatment and challenges of cancer.
End of Life Support
American Hospice Foundation
The American Hospice Foundation supports programs that serve the needs of terminally ill and grieving individuals of all ages
Wisdom and Humor
“The Median Isn’t the Message” by Stephen Jay Gould
“As far as I’m concerned, Gould’s The Median Isn’t the Message is the wisest, most humane thing ever written about cancer and statistics. It is the antidote both to those who say that, “the statistics don’t matter,” and to those who have the unfortunate habit of pronouncing death sentences on patients who face a difficult prognosis. Anyone who researches the medical literature will confront the statistics for their disease. Anyone who reads this will be armed with reason and with hope. The Median Isn’t the Message is reproduced here by permission of the author.” by Steve Dunn
Postscript By Steve Dunn
Many people have written me to ask what became of Stephen Jay Gould. Sadly, Dr. Gould died in May of 2002 at the age of 60. Dr. Gould lived for 20 very productive years after his diagnosis, thus exceeding his 8 month median survival by a factor of thirty! Although he did die of cancer, it apparently wasn’t mesothelioma, but a second and unrelated cancer.