Information - Support - Advocacy
Research... and Hope

Resources

Knowledge and information are empowering, and chance favors the prepared mind. Whether you are a patient, supporter / family member, or caregiver, the more informed you are, the better decisions you will make in relationship to oral cancer. This list of resources on the web is constantly being updated. You will find support organizations, data bases, governmental agencies which deal with cancer, private cancer foundations and societies, cancer treatment and research centers, and sites related to individual caregivers who are members of the Oral Cancer Foundation. If you would like to be added to our resources list, please contact us


Government Organizations


FDA Cancer Tools

http://www.fda.gov/cder/cancer

FDA Cancer Tools contains a variety of information related to cancer and approved cancer drug therapies.

The National Cancer Institute

http://www.nci.nih.gov/

National Health Information Society

http://www.health.gov/nhic

The National Health Information Center (NHIC) is a health information referral service. NHIC puts health professionals and consumers who have health questions in touch with those organizations that are best able to provide answers.

National Institute of Dental and Craniofacial Research

http://www.nidcr.nih.gov

National Institutes of Health

The mission of the National Institute of Dental and Craniofacial Research (NIDCR) is to promote the general health of the American people by improving their oral, dental and craniofacial health. The NIDCR aims to promote health, to prevent diseases and conditions, and to develop new diagnostics and therapeutics.

National Coalition For Cancer Survivorship

http://www.canceradvocacy.org

NCCS brings together cancer-related research organizations and institutions, cancer support and advocacy groups, and thousands of cancer survivors to work together in addressing the needs of those living with cancer.

SEER Program

http://seer.cancer.gov

The Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute is the most authoritative source of information on cancer incidence and survival in the United States. Case ascertainment for SEER began on January 1, 1973

The SEER Program currently collects and publishes cancer incidence and survival data from 11 population-based cancer registries and three supplemental registries covering approximately 14 percent of the US population. The expansion registries increase the coverage to approximately 26 percent. Information on more than 3 million in situ and invasive cancer cases is included in the SEER database, and approximately 170,000 new cases are accessioned each year within the SEER catchment areas. The SEER Registries routinely collect data on patient demographics, primary tumor site, morphology, stage at diagnosis, first course of treatment, and follow-up for vital status. The SEER Program is the only comprehensive source of population-based information in the United States that includes stage of cancer at the time of diagnosis and survival rates within each stage. The mortality data reported by SEER are provided by the National Center for Health Statistics.

PubMed

http://www.ncbi.nlm.nih.gov/pubmed

PubMed comprises more than 19 million citations for biomedical literature from MEDLINE, life science journals, and online books. Citations may include links to full-text content from PubMed Central and publisher web sites. This is a trusted source for peer reviewed information on all things medical not just oral cancer.

Cancer organizations / Foundations


American Cancer Society

http://www.cancer.org

Adenoid Cystic Carcinoma Research Foundation

http://www.accrf.org

The Adenoid Cystic Carcinoma Research Foundation (ACCRF) seeks to accelerate the development of improved therapies and a cure for adenoid cystic carcinoma, a rare malignancy that typically originates in the salivary glands and other regions of the head and neck. In pursuit of its mission, ACCRF works to build a community of interested researchers who collaborate in implementing an innovative Research Agenda."

Adenoid Cystic Carcinoma Organization International

http://www.accoi.org

Adenoid Cystic Carcinoma Organization International (“ACCOI”) is dedicated to furthering research, raising awareness and providing education regarding the rare cancer adenoid cystic carcinoma (“ACC”). ACCOI’s website provides ACC patients and caregivers with information on research, clinical trials, treatment, organizations offering help with medical expenses, and much more. In addition to ACCOI’s website, ACCOI maintains an online support group for ACC patients and caregivers, and an online doctors’ forum where doctors with an interest in ACC can share information on treatment and research. ACCOI also provides a quarterly newsletter in hard copy to various hospitals, as well as at its website.

American Society of Clinical Oncology

http://www.asco.org

The American Society of Clinical Oncology is a nonprofit organization, which represents 15,000 cancer professionals worldwide; the society offers scientific and educational programs and a wide range of other initiatives intended to foster the exchange of information about cancer.

Association of Cancer Online Resources

http://www.acor.org

ACOR offers information and support through its integrated sytem of online discussion groups.
To further its mission, ACOR creates specific websites and also hosts a growing number of websites, created by:

* Patients for patients and caregivers.
many of those websites are considered to be clearly among the best sites for a particular disease or condition.
* Cancer Advocacy Organizations, many of which were created directly from the membership of an ACOR mailing list.
* Professional Organizations.
ACOR volunteers have also created a growing number of disease specific websites.

Association of Oncology Social Work

www.aosw.org

The Association of Oncology Social Work (AOSW) is a non-profit, international organization dedicated to increasing awareness about the social, emotional, educational, and spiritual needs of cancer patients. AOSW's mission is to advance excellence in the psychosocial care of persons with cancer, their families, and caregivers through: Networking. Education, Advocacy, Research and Resource Development. It supports its members' commitment to helping and advocating for cancer patients by providing continuing education through conferences and publications; promoting clinical research; and fostering networking to address common issues and concerns. It is involved in numerous collaborative efforts with other national and international oncology organizations to advocate for the support and care of people with cancer.

CancerCare Inc.

http://www.cancercare.org

Since 1944, Cancer Care has been dedicated to providing emotional support, information, and practical help to people with cancer and their loved ones. They have helped over two million people nationwide through toll-free Counseling Lines and teleconference programs, their office-based services, and via the Internet. All services are provided free of charge and are available to people of all ages, with all types of cancer, at any stage of the disease. Their reach, including its cancer awareness initiatives, also extends to family members, caregivers, and professionals, providing vital information and assistance.

Cancerfatigue.org

http://www.cancerfatigue.org

Cancer-related fatigue is the most common and debilitating side effect of cancer and its treatment. In fact, most people living with cancer, and especially those living with lung cancer, experience mild to extreme fatigue. A recent survey shows cancer-related fatigue affects 76% of cancer patients undergoing chemotherapy. The Oncology Nursing Society has developed this Web site to provide you with multiple resources to get the information you need about cancer fatigue.

Fertile Hope

http://www.fertilehope.org

Fertile Hope is a national nonprofit organization dedicated to providing reproductive information, support and hope to cancer patients whose medical treatments present the risk of infertility. Fertile Hope is currently pursuing strategies in the following five areas: research, awareness, education, financial assistance and support. The organization will strive to advance fertility research, help advance the understanding of fertility risks and preservation options, allow and encourage personal educated decisions, make preservation treatments available regardless of economic status and help patients cope with important family planning issues. Founded in October 2001.

The National Comprehensive Cancer Network

http://www.nccn.org/

The National Comprehensive Cancer Network (NCCN) is a not for profit, tax-exempt corporation that is an alliance of the world's leading cancer centers. Established in 1995 to enhance the leadership role of member institutions in the evolving managed care environment, the NCCN seeks to support and strengthen the mission of member institutions in three basic areas:

  1. To provide state-of-the-art cancer care to the greatest number of patients in need;
  2. To advance the state of the art in cancer prevention, screening, diagnosis and treatment through excellence in basic and clinical research;
  3. To enhance the effectiveness and efficiency of cancer care delivery through the ongoing collection, synthesis and analysisof outcomes data.

Support for People with head and Neck Cancer (SPOHNC)

http:// www.spohnc.org

A patient support organization that provides group and individual emotional support. Through this service, patients or their family members are matched with volunteers who have had a similar diagnosis and treatment program. They have month meetings usually coordinated with a cancer center and facility staff. A newsletter is available by paid subscription 9 times per year.

Quackwatch, Inc

http://www.quackwatch.org

Quackwatch, Inc., a member of Consumer Federation of America, is a nonprofit corporation whose purpose is to combat health-related frauds, myths, fads, and fallacies. Its primary focus is on quackery-related information that is difficult or impossible to get elsewhere. Founded by Dr. Stephen Barrett in 1969 as the Lehigh Valley Committee Against Health Fraud, it was incorporated in 1970. In 1997, it assumed its current name and began developing a worldwide network of volunteers and expert advisors.

Vital Options

http://www.vitaloptions.org

Vital Options® TeleSupport® Cancer Network is a not-for-profit cancer communications, support and advocacy organization dedicated to using communications technology to help people cope with cancer and whose mission is to facilitate a global cancer dialogue. Vital Options is the producer of The Group Room®—the nationally syndicated radio call-in cancer talk show which reaches more than half-a-million radio listeners each Sunday throughout the United States as well as others worldwide who hear the show simulcast live over the Internet(www.vitaloptions.org). This interactive website also provides cancer information and resources, as well as access to past broadcasts of The Group Room and toll free phone numbers for callers in the United States (1-800-GRP-ROOM; 1-800-477-7666) and Europe to enter live on-air discussions.

WebWhispers (Laryngectomy site)

http://www.webwhispers.org/index.asp

WebWhispers was started in 1996 for those who had questions about larynx cancer treatments, surgery, recovery, and what life is like after laryngectomy surgery.  We are now the largest support group for individual Laryngectomy survivors of larynx and other throat cancers.  We offer advice from those who have been there and education at the time it is needed.

Cancer Centers


NCI-designated Cancer Centers

Resource list

This is the list of National Cancer Institute approved cancer centers in the US, listed by state alphabetically. The National Cancer Institute provides funding for research. Institutions apply for NCI designation (the selection is done through a peer-review process), and the term "NCI-designated" primarily has to do with the facility's research interests --- not the quality or scope of patient care.

An NCI-designated comprehensive cancer center means that the institution is involved in research in three areas: laboratory, clinical and population-based. All NCI-designated comprehensive cancer centers also treat patients. An NCI-designated cancer center concentrates research in one or two of those areas, and a few of these facilities -- like the Wistar Institute in Philadelphia or the Salk Institute in San Diego -- do research only. Further information is available here

MD Anderson Cancer Center

http://www.mdanderson.com

Consistently rated by independent survey, the number one head and neck cancer facility in the world. For the last 5 years it has juggled for this position with Memorial Sloan Kettering.

The James Cancer Hospital and Richard J. Solove Research Institute

http://www.jamesline.com

The Johns Hopkins Oncology Center

http://www.hopkinscancercenter.org

Greenbaum Cancer Center

http://www.umm.edu/cancer/index.html

Head and Neck Center

http://www.umm.edu/cancer/head_neck_resources.html

The Mayo Clinic

http://www.mayo.edu

Memorial Sloan-Kettering Cancer Center

http://www.mskcc.org

Consistently rated by independent survey, the number one head and neck cancer facility in the world. For the last 5 years it has juggled for this position with MD Anderson Cancer Center.

UCLA Medical Center

http://www.healthcare.ucla.edu

UCLA's Jonsson Comprehensive Cancer Center

http://www.cancer.mednet.ucla.edu

UCLA's Jonsson Comprehensive Cancer Center (JCCC) has established an international reputation for developing new cancer therapies, providing the best in experimental and traditional treatments, and expertly guiding and training the next generation of medical researchers. Site also has a searchable database.

Other Treatment Facilities and Research Centers (Links)


Medical Databases


Cancer terminology dictionary.

http://www.cancer.gov/dictionary/

A comprehensive dictionary of terms which will assist you in understanding terms that your doctors may use in relationship to cancer. Part of the National Cancer Institute website.

U.S. News "The Best Hospitals"

http://health.usnews.com/best-hospitals/rankings/cancer

Using original survey data and secondary analyses of data from the American Hospital Association and the Centers for Medicare & Medicaid Services, this is an index of hospital quality updated on an annual basis. This index has three components designed to represent three key aspects of care-structure, process, and outcome. More than 900 hospitals are listed in Cancer. All are experienced in treating difficult cases—a hospital is listed only if at least 417 inpatients who needed a high level of expertise in this specialty were treated there in 2005, 2006, and 2007, or if surveyed specialists recommended the hospital for such patients. The top 50 hospitals are ranked by score. Those below the top 50 are listed alphabetically. If this link brings up a 404 error page, they are still working on their web site. Look right below the 404 statement, and you will see a link to "hospitals" once there - select cancer, and you will be on the main list. We hope that US News will have this corrected soon.

Hospitals Worldwide

http://www.hospitalsworldwide.com

This is a general listing of hospitals, but does not rank them, and is for finding contact information of those close to a specific location that may be entered by the database user.

Medscape

http://www.medscape.com

Provides the most current medical information and services that provide reliable, digital clinical data and up-to-date information to healthcare professionals and consumers.

CancerNet

http://www.cancernet.nci.nih.gov

CancerNet provides current and accurate cancer information from the National Cancer Institute, the Federal Government's principal agency for cancer research. You will find a wide range of cancer information, including treatment options, clinical trials, ways to reduce cancer risk, and ways to cope with cancer.

Doctor's Guide to the Internet

http://www.docguide.com

OncoLink

http://www.oncolink.com

OncoLink was founded in 1994 by Penn cancer specialists with a mission to help cancer patients, families, health care professionals and the general public get accurate cancer-related information at no charge.

Oral Cancer Gene Database

http://www.tumor-gene.org/Oral/index.html

Database containing information about genes which are targets for cancer-causing mutations in oral cancers.

Palliative Care

Professional Societies


The American Association for Cancer Research

http://www.aacr.org

The American Association for Cancer Research (AACR), a scientific society of over 17,000 laboratory and clinical cancer researchers, was founded in 1907 to facilitate communication and dissemination of knowledge among scientists and others dedicated to the cancer problem; to foster research in cancer and related biomedical sciences; to encourage presentation and discussion of new and important observations in the field; to foster public education, science education, and training; and to advance the understanding of cancer etiology, prevention, diagnosis, and treatment throughout the world.

American Board of Medical Specialties

http://www.abms.org

The American Board of Medical Specialties (ABMS) is an organization of 24 approved medical specialty boards.  The intent of the certification of physicians is to provide assurance to the public that those certified by an ABMS Member Board have successfully completed an approved training program and an evaluation process assessing their ability to provide quality patient care in the specialty. The ABMS serves to coordinate the activities of its Member Boards and to provide information to others concerning issues involving specialization and certification of medical specialists.

American Academey of Oral Medicine

http://www.aaom.com

Oral Medicine is the specialty of dentistry concerned with the oral health care of medically complex patients and with the diagnosis and non-surgical management of medically-related disorders or conditions affecting the oral and maxillofacial region. These doctors are usually associated with teaching institutions and treatment facilities, but a few are in private practice. They are ideal individuals for the diagnosis of suspect tissues  in the oral environment, to determine if and what disease state exists, such as oral cancer.

American Head and Neck Society

http://www.ahns.info

In 1998, The American Head and Neck Society (AHNS) became the single largest organization in North America for the advancement of research and education in head and neck oncology. The merger of two societies, the American Society for Head and Neck Surgery and the Society of Head and Neck Surgeons, formed the American Head and Neck Society. The society was formed to promote and advance the knowledge of prevention, diagnosis, treatment, and rehabilitation of neoplasms and other diseases of the head and neck

American Academy of Otolaryngology-Head and Neck Surgery

http://www.entnet.org

The world's largest society of physicians who treat disorders of the ear, nose, and throat and related structures of the head and neck.

Find an ENT web resource

http://www.entnet.org/ent_otolaryngologist.cfm

The special skills of otolaryngologist ENT’s include diagnosing and managing diseases of the sinuses, larynx (voice box), oral cavity, and upper pharynx (mouth and throat), as well as structures of the neck and face. Otolaryngologists diagnose, treat, and manage specialty-specific disorders as well as many primary care problems in both children and adults. This web resource will allow you to find an ENT otolaryngologist in any geographic area in the US by searching using an area code or geographic location.

American Dental Association

http://www.ada.org

The ADA is the professional association of dentists dedicated to serving both the public and the profession of dentistry. The ADA assists in education, research, advocacy and the development of standards in the dental industry. The Oral Cancer Foundation has frequently disagreed with the ADA's alliance with commercial entities, and with some of their statements that our scientific board disagrees with, the most recent of which is that "Oral Cancer can be prevented" which is scientifically incorrect. That said, we believe that dentists, which the ADA represents, are the best hope for early discovery of disease when more of them are actively engaged in opportunistic screenings.

American Association of Oral and Maxillofacial Surgeons

http://www.aaoms.org

AAOMS is a professional association of oral and maxillofacial surgeons and is dedicated to promoting the highest quality of patient care and education. If a dentist finds an area of suspect tissue in your mouth, this is the group of doctors they will most likely refer you to for a biopsy.

American Society of Clinical Oncology

http://www.asco.org

The American Society of Clinical Oncology is a nonprofit organization, which represents 15,000 cancer professionals worldwide; the Society offers scientific and educational programs and a wide range of other initiatives intended to foster the exchange of information about cancer.

American Speach-Language-Hearing Association

www.asha.org

This site has excellent information and resources related to speech and swallowing disorders, both which may affect those who have had surgery for oral cancer. References to therapists are also on this link.

The American Dental Hygienists' Association

http://www.adha.org

The mission of the ADHA is to advance the art and science of dental hygiene by increasing the awareness of, and ensuring access to, quality, cost-effective oral health care. Their site has good oral cancer information. The dental hygiene community of RDH's are strong proponents of screening and early detection of oral cancers.

American Association of Cancer Research

http://www.aacr.org

The American Association for Cancer Research (AACR), a scientific society of over 15,000 laboratory and clinical cancer researchers, was founded in 1907 to facilitate communication and dissemination of knowledge among scientists and others dedicated to the cancer problem; to foster research in cancer and related biomedical sciences; to encourage presentation and discussion of new and important observations in the field; to foster public education, science education, and training; and to advance the understanding of cancer etiology, prevention, diagnosis, and treatment throughout the world.

American Society for Therapeutic Radiology And Oncology (ASTRO)

http://www.rtanswers.org

Created by physician members of the American Society for Therapeutic Radiology and Oncology, Radiation Therapy Answers (RT Answers) explains how radiation is used safely and effectively used to treat cancer. It contains pictures and descriptions of the types of radiation therapy used to treat cancer, including external beam radiation therapy, 3D conformal radiation therapy (3D-CRT), intensity modulated radiation therapy (IMRT), proton therapy and brachytherapy, also called seed implants. It includes a Doctor Finder feature to allow you to find an oncologist in your area as well as a dictionary that defines common terms and a list of questions to ask your doctor before deciding on a treatment. Visitors can also request hard copies of brochures on the site.

Products


Atos Medical

http://www.atosmedical.com

As a worldwide ENT (Ear, Nose and Throat) company Atos Medical offers high quality innovative products within laryngology, otology, rhinology and also oral and maxillofacial rehabilitation


Clinical Trials

CancerTrials

http://www.cancer.gov/clinical_trials

A service of the National Cancer Institute, this site helps link cancer patients to appropriate clinical trials.

Center Watch

http://www.centerwatch.com

A service listing of clinical trials throughout the United States.

ClinicalTrials.gov

http://www.clinicaltrials.gov

The U.S. National Institutes of Health, through its National Library of Medicine, developed ClinicalTrials.gov to provide patients, family members and members of the public current information about clinical research studies.


Publications

The Lancet Oncology Publications

http://www.thelancet.com/collections/oncology?collexcode=119

The journal was, and remains, since its beinings in 1823, independent, and without affiliation to a medical or scientific organization, ensuring unbiased peer reviewed information. More than 180 years since its inception, The Lancet is an independent and authoritative voice in global medicine. It seeks to publish high-quality clinical trials that will alter medical practice; with a commitment to international health ensures that research and analysis from all regions of the world is widely covered. Critical appraisal of research and reviews is ensured by strong Comment and Correspondence sections; The Lancet's opinion and personality is communicated by three editorials every week; fast dissemination of priority issues is delivered by online first publication through www.thelancet.com

ENT/Otolaryngology Journals

http://www.medbioworld.com/med/journals/oto.html

The Oral Cancer Advocate

http://www.oral-cancer.info

This is a blog site that is unregulated and offers opinions about issues as they relate to the oral cancer issue in the US. It is a highly opinionated view of things, not all of which does the foundation agree with.


Tobacco and Risk Factor Cessation Help

Government Resources

Other Resources

Cessation links


Nutritional Information

US Government Nutrition Site

http://www.nutrition.gov

US Department of Agriculture Nutrition Site

http://www.nal.usda.gov/fnic