1) Keep up an open dialogue with your doctor
It is natural to want to understand as much as possible about a disease and its treatments, particularly when the disease is as rare as malignant mesothelioma. The Internet has opened up a wealth of information on mesothelioma, however, it is still important to keep in mind that your doctor is your FIRST and (hopefully) BEST resource for understanding and dealing with this disease.
This does not mean that you shouldn't explore resources and treatments on your own; a good doctor wants informed patients who are interested in discussing every available option. Only a trained physician, however, can help you understand each treatment and evaluate how it fits in with your particular circumstances, including the stage of your disease.
There are valuable research and support resources available via the Internet which can assist you in your efforts to gain medical knowlege as you begin your interaction with your doctor. To begin, there is an online resource that tutors on how to use the Internet to research a lung cancer diagnosis. This tutorial also cautions you as a researcher to be mindful of the limitations of Internet-based research and to learn how to evaluate the information that you do find. Another useful tool to assist in being an informed patient is The Cancer Patient's Workbook: Everything You Need to Stay Organized and Informed, (DK Books, 2001). This workbook hopes to help the patient better understand their situation so they may deal with and fight their disease from an informed position. This interactive guide helps patients cope and also explains how to receive the best treatment possible.
2) Explore the American Cancer Society's Cancer Resource Center
This community-based organization claims its mission is "eliminating cancer as a major health problem...through research, education, advocacy, and service." As a non-governmental organization, the American Cancer Society is the largest source of private funds earmarked for cancer research. The ACS website is a very good place for you to investigate ongoing research and treatment options, as well as find extensive links to help further direct your medical research.
The American Cancer Society provides a useful fact sheet that describes the asbestos - mesothelioma link. If you suspect that you might have mesothelioma, there are several methods which can help to detect the presence of this disease.
While you may find some answers on this particular site, the ACS advises you to remember that as you cope with cancer and cancer treatment, you need to have honest, open discussions with your doctor. You should feel free to ask any question that's on your mind, no matter how small it might seem.
3) Explore the National Cancer Institute's PDQ
The National Cancer Institute provides a computer service called PDQ to give up-to-date information on cancer issues for patients, their families, doctors, and other healthcare professionals. Detailed information on detection, diagnosis, treatment, support groups, clinical trials and treatments is reviewed and updated each month by oncology experts. Each topic is discussed in two tracks, one for patients and one for healthcare professionals.
You might want to visit the information written for patients first, in order to get a clear understanding of the issues discussed in layman's terms. For more detailed information, you can then explore the physician's track.
By going to NCI's CancerNet, you can research the PDQ informational summaries for malignant mesothelioma; these summaries are written for both patient or professional readers. You will also find a useful overview on researching, treating, and coping with malignant mesothelioma.
You will find links to other treatment specific PDQ pages throughout this website.
4) Explore MEDLINE
Published by the National Library of Medicine, MEDLINE is a comprehensive index of medical citations and abstracts dating back to 1966. In the past, this database was available only to students, doctors or by subscription. However, there are now several Internet resources which offer free MEDLINE access, including PubMed and MedlinePlus. Use of both services is free, although you must initially fill out a member registration form.
An additional benefit of these services is access to full-text versions of many of the articles. PubMed publishes a list of MEDLINE journals with links to publisher web sites at: http://www.ncbi.nlm.nih.gov/PubMed/fulltext.html. Access to these articles may require user registration or a small fee, but recent issues are often available free of charge.
These publications and abstracts are not written for the layperson, so make sure you discuss any literature you read with your doctor before making any decisions about them.
Although MEDLINE is the most comprehensive database of medical literatere, the National Cancer Institute also has a free database of cancer-specific abstracts and literature.
5) Contact the Cancer Information Service
The National Cancer Institute offers an informational and educational service known as the Cancer Information Toll-Free Telephone Service (CIS). Information is available in Spanish and English, and is up-to-date and easy to understand. You can get information about recent scientific advances, cancer programs, prevention, early detection, and other topics.
Contact the CIS, toll-free in the United States and Puerto Rico, at 1-800-4-CANCER (1-800-422-6237), Monday through Friday, 9:00 a.m. to 4:30 p.m., your time.
6) Explore OncoLink
The University of Pennsylvania maintains OncoLink, an outstanding resource on the web for information about all types of cancer and related topics. The homepage is http://www.oncolink.com and has information about clinical trials, symptom management, cancer support services, financial issues, book reviews, and many other topics. OncoLink has mesothelioma patient information found under Patient Statement: Malignant Mesothelioma. For a more personal perspective, there is also an article entitled "Thoughts from a Mesothelioma Patient".
Lastly, for a broad resource on the cancer topic and links to specific web sites, consult the Lung Cancer Resources Directory.
If you have questions, need more information, or experience difficulty accessing these sites, please feel free to contact us and we will do our best to help.
December 19, 2009
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