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Old Fri Jul 15, 2011, 11:19 AM
Bob Macfarlane Bob Macfarlane is offline
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Join Date: Feb 2010
Location: Soutwest Ranches, Florida
Posts: 126
NCI Response --- Bureacratic BS

07/14/11_56618PIQ

Thank you for your letter to the National Cancer Institute (NCI) regarding myelodysplastic syndromes (MDS). In your letter, you asked whether MDS should be considered anemia or cancer. You also asked why the NCI collects data on MDS if it is not considered cancer. The NCI, a component of the National Institutes of Health (NIH), is the Nation's principal agency for cancer research. The NCI is responsible for coordinating the National Cancer Program and for maintaining our momentum in cancer research. We hope you will understand that, as a Federal Government research agency, the NCI is not involved in the classification of diseases. However, we can offer information that you may find useful.

MDS, also called preleukemia or smoldering leukemia, are a group of diseases in which the bone marrow does not make enough healthy blood cells. MDS transform to acute myeloid leukemia (AML) in about 30 percent of patients after various intervals from diagnosis and at variable rates. For information about MDS, you may wish to refer to the "PDQ® Treatment Summary for Health Professionals on Myelodysplastic Syndromes." This summary of information from PDQ, the NCI's comprehensive cancer information database, provides information about treatment for myelodysplastic syndromes. This resource is available at http://www.cancer.gov/cancertopics/p...ional/AllPages.

In your letter, you asked why the NCI's Surveillance, Epidemiology, and End Results (SEER) program collects data on MDS. As part of the NCI's mission to develop effective prevention, early detection, and treatment approaches for cancer, the NCI is interested in precancerous conditions and other risk factors that may lead to cancer.

According to the SEER program, in most cancer registries, the reportable tumors are those that are listed in the International Classification of Diseases for Oncology, Third Edition (ICD-O-3), which have a behavior defined as in situ or invasive. Tumors that are reportable to SEER include those that are classified as in situ and malignant. This information can be found on the SEER Behavior Recode for Analysis Web page at http://seer.cancer.gov/behavrecode/. According to the "SEER Cancer Statistics Review, 1975-2008," myelodysplastic syndromes and chronic myeloproliferative disorders were reclassified from nonmalignant to malignant in the ICD-O-3. These diagnoses became reportable for cases diagnosed in 2001, when ICD-O-3 went into effect. This information can be found in section 30 of the SEER CSR at http://seer.cancer.gov/csr/1975_2008...ect_30_mds.pdf.

To view the PDF above, you must have Adobe® Reader®. If you do not have this software, a free download is available at http://get.adobe.com/reader.

If you have additional questions regarding SEER's MDS data, you may wish to contact the SEER program directly. SEER staff can be reached at:

Address: Cancer Statistics Branch
Surveillance Research Program
Division of Cancer Control and Population Sciences
National Cancer Institute
Suite 504, MSC 8316
6116 Executive Boulevard
Bethesda, MD 20892-8316
Telephone: 301-496-8510
Fax: 301-496-9949
E-mail: seerweb@imsweb.com
Web site: http://seer.cancer.gov

Thank you for writing.


Deborah Pearson, R.N., M.P.H.
Chief, Public Inquiries Office
Cancer Information Service
National Cancer Institute
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