Cancer Information

Information can be a powerful ally in all aspects of cancer prevention, diagnosis, treatment, and supportive care. The development of health and medical information as a consumer commodity combined with the Internet has generated a vast amount of potential resources for retrieving cancer information. The challenges for anyone seeking information about cancer are deciding where to start and sorting out the reliable resources. The objective here is to introduce authoritative, distinguished organizations that have established records of reliability in providing comprehensive cancer information to patients, their loved ones, and the public at large.

Among the oldest and most reliable resources for comprehensive cancer information and support are the American Cancer Society and the National Cancer Institute.

American Cancer Society (ACS)

800-ACS-2345

TTY: 866-228-4327

www.cancer .org

Founded in 1913 as the American Society for the Control of Cancer, this organization became a pioneer in cancer education and information at a time when cancer was not discussed in public or in the media. Today, it has thirteen divisions spread throughout the United States and more than 3,400 local offices charged with providing information about cancer prevention, detection, treatment, and support. The ACS also supports research and is the largest nonprofit source for funding cancer research, second only to the federal government.

The Web site for the ACS is an excellent place to begin looking for answers to your questions about cancer. At this site, you can find information about cancer in general, treatment and treatment decision tools, support groups and services, special health needs of patients and survivors, and clinical trials, as well as information on how to locate a local ACS office in your area. The site also provides links to other reliable resources for cancer information on the Internet.

The ACS facilitates access to cancer information in languages other than English. All of the general cancer information at its site is available in Spanish. In conjunction with the Asian American Network for Cancer Awareness, Research, and Training (www.aancart .org), the ACS launched a Web site in 2006 designed to help Asians and Pacific Islanders with limited English skills to access cancer information. The Web site is accessible from the ACS home page at “Asian and Pacific Islander Materials,” where users will find information in Chinese, Korean, and Vietnamese, plus links to more Asian language cancer information sources.

National Cancer Institute (NCI) and NCI’s Cancer Information Service (CIS)

800-4-CANCER (800-422-6237)

TTY: 800-332-8615

www.cancer .gov

The National Cancer Institute, created in 1937, was given new responsibilities and requirements with the National Cancer Act of 1971. The law required that the NCI expand its research program and translate its research findings for use by health professionals, patients, and the general public. Acting on this mandate, the NCI developed the Cancer Information Service, and it has evolved into a comprehensive resource for providing access to information specialists and information on cancer treatments, supportive care, and clinical trials. Through its network of regional offices, CIS now serves the United States, Puerto Rico, and the U.S. Virgin Islands.

Information Specialists The CIS information specialists answer questions about cancer, providing the most recent and accurate information in easy-to-understand language. These specialists are knowledgeable and experienced at explaining medical information; the service is confidential and a specialist will spend as much time as necessary to provide a thorough response. The specialists can also help you find out about clinical trials, cancer-related services, and other cancer organizations. They cannot provide personal medical consultation and they cannot make referrals to specific physicians.

There are three ways to contact a CIS information specialist:

• Telephone: 800-4-CANCER (800-422-6237; calls answered in English or Spanish from 9:00 A.M. to 4:30 P.M. local time).

• TTY: 800-332-8615 (calls answered in English from 9:00 A.M. to 4:30 P.M. Eastern time).

• Via the Internet: At the cancer .gov Web site, click on “Need Help?” and connect to the “LiveHelp” instant-messaging service. This service is available in English, Monday through Friday, from 9:00 A.M. to 11:00 P.M. Eastern time.

The NCI also collaborates with other federal agencies to disseminate information about cancer:

• The Veterans Administration and the NCI provide information on their interagency-partnership agreement in clinical trials for cancer: www.va .gov/cancer.

• The FDA Cancer Liaison Program, Office of Special Health Issues, in collaboration with the NCI, answers questions directed to the FDA by participants, their families, and participant advocates about therapies for life-threatening diseases.

Cancer Information—PDQ (Physician Data Query) In fulfilling legislative mandates to disseminate cancer information, the National Cancer Institute has embraced the power of the Internet to provide access to its huge repository of resources on all aspects of cancer. The NCI Web site, www.cancer .gov, is essentially a “one-stop” resource for cancer information. A core component of cancer .gov is the PDQ database.

The following information about PDQ is directly from the Web site at www.cancer .gov/cancertopics/pdq/cancerdatabase: “PDQ is NCI’s comprehensive cancer database. It contains peer-reviewed summaries on cancer treatment, screening, prevention, genetics and supportive care, and complementary and alternative medicine; a registry of approximately 5,000 open and 16,000 closed cancer clinical trials from around the world; and directories of physicians, professionals who provide genetics services, and organizations that provide cancer care.”

Cancer Information Summaries The PDQ cancer information summaries are peer reviewed and updated monthly by six editorial boards comprised of specialists in adult treatment, pediatric treatment, supportive care, screening/detection, prevention, genetics, and complementary and alternative medicine. The boards review current literature from more than seventy biomedical journals, evaluate its relevance, and synthesize it into clear summaries. Many of the summaries are also available in Spanish.

• Adult Treatment Summaries PDQ contains evidence-based summaries that provide prognostic and treatment information on the major types of cancer in adults. Summaries are available for over seventy types of cancer, including a number of brief summaries on less common cancers. Health professional versions of the summaries provide detailed information on prognosis, staging, and treatment for each disease; refer to key citations in the literature; and link to abstracts for the citations. The PDQ adult treatment summaries are also available in patient versions, written in easy-to-understand, nontechnical language.

• Pediatric Treatment Summaries PDQ contains prognostic and treatment information on the major types of cancer in children, as well as information on unusual childhood cancers. Health professional versions of the summaries provide detailed information on prognosis, staging, and treatment for each disease; refer to key citations in the literature; and link to abstracts for the citations. All of the PDQ pediatric treatment summaries are also available in patient versions, written in easy-to-understand, nontechnical language.

• Supportive Care Summaries The PDQ supportive care summaries provide descriptions of the pathophysiology and treatment of common physical and psychosocial complications of cancer and its treatment, such as pain, hypercalcemia, and nausea and vomiting. Each health professional version generally contains an overview; information on etiology, assessment, and management; and references to the current literature. Most of the supportive care summaries are also available in patient versions, written in easy-to-understand, nontechnical language.

• Screening/Detection Summaries Summaries on screening/detection for many of the common cancers such as lung, colorectal, breast, and prostate, as well as other cancers, are available. The health-professional-oriented summaries contain current data concerning screening/detection for particular disease sites, the levels of evidence for those statements, and the significance and evidence of benefit for the statements, which include supporting references to current literature. Most of the screening/detection summaries are also available in patient versions, written in easy-to-understand, nontechnical language.

• Prevention Summaries Summaries on prevention for many of the common cancers such as lung, colorectal, breast, and prostate, as well as other cancers, are available. Health professional versions of the summaries contain current data concerning prevention for particular disease sites, the levels of evidence for those statements, and the significance and evidence of benefit for the statements. Supporting references to current literature are included. Most of the prevention summaries are also available in patient versions, written in easy-to-understand, nontechnical language.

• Genetics Summaries The PDQ genetics summaries provide evidence-based information about the genetic basis of certain cancers. Information is given about risk factors related to family history; major genes and syndromes associated with the disease; interventions specific to individuals at high risk; and the ethical, legal, and social issues related to cancer risk counseling and gene testing. An overview of cancer genetics and summaries on the genetics of breast and ovarian cancer, colorectal cancer, medullary thyroid cancer, and prostate cancer are currently available. A summary covering the elements of cancer risk assessment and counseling is also available.

• Complementary and Alternative Medicine Summaries The treatments described in these summaries are generally not disease specific. The health professional versions of the summaries contain background information about the treatments; a brief history of their development; information about their proposed mechanism(s) of action; and information about relevant laboratory, animal, and clinical studies. They are also written using language for nonexperts and include glossary links to scientific terms. Most of the summaries are also available in patient versions that are written in question-and-answer formats and include links to definitions of scientific terms. In the future, summaries will be written on complementary and alternative medicine approaches to cancer prevention.

Clinical Trials The National Cancer Institute is the U.S. government’s primary agency for managing cancer clinical trials. The following information is produced by the NCI:

The PDQ contains the world’s most comprehensive cancer clinical trials database. It includes approximately 2,600 abstracts of trials that are open and approved for accepting patients, including trials for cancer treatment, genetics, diagnosis, supportive care, screening, and prevention. In addition, there is access to approximately 16,000 abstracts of closed clinical trials that have been completed or are no longer accepting patients. Abstracts are written in two formats, the health professional abstract (uses technical terminology) and the patient abstract (uses nontechnical language). However, some trials (obtained from the ClinicalTrials .gov database) contain the same text in both the patient and health professional abstracts.

The NCI’s clinical trials database can be searched using a basic search form that allows selection of a type of cancer, stage/subtype, type of trial, and location. It is also possible to search for trials using additional criteria such as type of treatment or intervention, drug name, and phase of trial, or a combination of these, and other variables by using an advanced search form. Help links at the top of each clinical trials search form lead to more information and tips about searching for clinical trials.

In addition to the PDQ clinical trials, the NCI also supports the Clinical Trials Education Series. This series provides self-paced workbooks, slide programs, booklets, and videos to help individuals and health care professionals understand clinical trials. More information about this series may be found at the NCI Web site: http://nci .nih .gov/clinicaltrials/resources/clinical-trials-education-series.

More Information on Finding Clinical Trials

Finding information about all cancer clinical trials requires going beyond the National Cancer Institute’s resources. Two other reliable resources on the Internet are ClinicalTrials .gov and the CenterWatch Clinical Trials Listing Service. In addition to cancer clinical trials, both ClinicalTrials .gov and CenterWatch Clinical Trials Listing Service include a wide range of diseases and conditions.

ClinicalTrials.gov

http://clinicaltrials .gov

The Food and Drug Administration Modernization Act of 1997 triggered creation of the ClinicalTrials .gov Web site. This legislation required establishment of a registry for both federally and privately funded clinical trials concerning serious or life-threatening diseases or conditions. The National Library of Medicine of the National Institutes of Health (NIH) developed the site in collaboration with all NIH institutes and the Food and Drug Administration. The site was launched in February 2000.

Today, ClinicalTrials .gov includes thousands of trials sponsored by NIH, other government agencies, the pharmaceutical industry, national and international universities, foundations, and other organizations. The site provides details about purpose and design of the study, trial phase, the recruitment status, criteria for participation, trial location, and specific contact information.

All of the NCI clinical trials should be accessible via ClinicalTrials .gov; however, the user interface for each database is different. The NCI advises exploring all clinical trials lists to ensure that you retrieve all relevant information.

CenterWatch Clinical Trials Listing Service

http://centerwatch .com

CenterWatch Clinical Trials Listing Service, founded in 1994 by the Thompson Corporation, focuses on the clinical trials industry and provides information services and educational materials on clinical research to patients.

At its Internet site, you can find “Clinical Trials Listings by Medical Areas,” which leads you to “Clinical Trials in Oncology.” In addition, there is a separate, extensive, regularly updated list of trials being conducted outside the United States. It is called the “International Clinical Trial Listings”; there is a section specific to oncology, and trials are organized by country.

In addition to the lists of trials, CenterWatch also has other clinical-trial-related services and resources for patients. These resources include an e-mail notification service to alert subscribers to new trials or new drugs when they are listed; drug directories that include recent FDA-approved drugs and results of recently completed and ongoing clinical trials; a section about clinical research that provides background on the clinical trials process; links to other relevant Web sites; and a patient bookstore.

Other Major Resources

National Institutes of Health—Health Information

http://health .nih .gov

The Web site of the National Institutes of Health devotes a section to health information that facilitates access to the health information resources of its various institutes. By accessing “Cancer” under “Health Topics A–Z” or “Browse Categories—Conditions/Diseases,” you will be linked to cancer information at institutes that have data on your specific cancer topic. For example, selecting “Brain Tumors” from “Health Topics A–Z” leads you to information at the National Cancer Institute, the National Institute of Neurological Disorders and Stroke, the National Library of Medicine, the NIH Clinical Center, and MedlinePlus (NIH’s premier consumer health Web site).

National Comprehensive Cancer Network (NCCN)

888-909-NCCN (888-909-6226) for Patient Guidelines

www.nccn .org

The National Comprehensive Cancer Network (NCCN), established in 1995, is a nonprofit alliance of leading cancer centers. Clinical professionals at NCCN member institutions pool their collective expertise to develop and disseminate clinical practice guidelines. A section of their Web site is devoted to information for patients and includes guidelines for treatment by type of cancer and guidelines for supportive care (both of these are available in English and Spanish). Other features for patients include finding NCCN clinical trials, finding physicians at NCCN institutions according to their specialties, and links to other reliable cancer information resources on the Internet.

PubMed

888-FIND-NLM (888-346-3656)

www.pubmed .gov

PubMed is a service of the National Library of Medicine (NLM) that contains over 16 million citations to the professional biomedical literature. PubMed is available to anyone anywhere in the world who has access to the Internet. PubMed also supports free access to many full-text journal articles on-line. The peer-reviewed journal citations accessed through PubMed represent the latest in published biomedical research, including all aspects of cancer. PubMed has a menu-driven interface to guide users through retrieving relevant citations and ultimately the full-text of journal articles. It is highly recommended that novice searchers read the on-line tutorials at the Web site and/or consult a professional medical librarian for assistance.