Ed Everest's Guide to the World's Best Cancer Websites
The address of the homepage is www.bestcancersites.com
BEST HEAD AND NECK
CANCERWEBSITES
The address of this page is www.bestcancersites.com/headandneckThe umbrella term Head and Neck Cancer actually includes many different cancers, the most common of these being oral cancer. Other types include Metastatic Squamous Neck Cancer, Nasopharyngeal Cancer, Oropharyngeal Cancer and Paranasal Sinus and Nasal Cavity Cancer.
You can read more about which cancers are included as head and neck cancers on this webpage of the National Cancer Institute website www.cancer.gov/cancertopics/factsheet/Sites-Types/head-and-neck.
They say "Most head and neck cancers begin in the cells that line the mucosal surfaces in the head and neck area, e.g., mouth, nose, and throat. Mucosal surfaces are moist tissues lining hollow organs and cavities of the body open to the environment. Normal mucosal cells look like scales (squamous) under the microscope, so head and neck cancers are often referred to as squamous cell carcinomas. Some head and neck cancers begin in other types of cells. For example, cancers that begin in glandular cells are called adenocarcinomas".
"Cancers of the brain, eye, and thyroid as well as those of the scalp, skin, muscles, and bones of the head and neck are not usually grouped with cancers of the head and neck".
I have prepared separate webpages for the following types of cancers that occur in the head or neck region:
brain - www.bestcancersites.com/brain
laryngeal - www.bestcancersites.com/laryngeal
thyroid - www.bestcancersites.com/thyroidBefore I move on to specific head and neck cancer websites, here are a few brief clarifying words about oral and oropharangeal cancers.
The American Cancer Society at www.cancer.org says "Oral cancer is cancer that starts in the mouth, also called the oral cavity. The oral cavity includes the lips, the inside lining of the lips and cheeks (buccal mucosa), the teeth, the gums, the front two-thirds of the tongue, the floor of the mouth below the tongue, the bony roof of the mouth (hard palate), and the area behind the wisdom teeth (retromolar trigone)."
"Oropharyngeal cancer develops in the part of the throat just behind the mouth, called the oropharynx. The oropharynx begins where the oral cavity stops. It includes the base of tongue (the back third of the tongue), the soft palate, the tonsils and tonsillar pillars, and the back wall of the throat (the posterior pharyngeal wall)."
The American Head and Neck Society at www.headandneckcancer.org says "Although cancers of the head and neck region only account for five percent of all cancers reported yearly in the human body, 30 percent of these cancers occur in the oral cavity" and "The most common cancer of the oral cavity is called squamous cell carcinoma and arises from the lining of the oral cavity. Over 95 percent of oral cavity cancers are squamous cell carcinomas ...".
Websites
A valuable source of reliable information on head and neck cancers is the website of the USA Government's National Cancer Institute at www.cancer.gov. The sections devoted to head and neck cancers give easy to read and easy to understand descriptions of what these cancers are, how they are diagnosed, treatment options, descriptions of treatments, and more.
To locate the sections on head and neck cancers, go to their home page, find the heading “Types of Cancer” and click on the link 'A to Z List of Cancers' and find and click on 'Head and Neck Cancer'.
The American Cancer Society has detailed guides to several types of cancer that occur in the head and neck region. These include oral cavity and oropharyngeal cancer, nasal cavity and paranasal cancer, nasopharyngeal cancer, and salivary gland cancer. Here's how to find them. Go to the American Cancer Society website home page at www.cancer.org, click on the link 'Choose a cancer topic', and find and click on the cancer type you are looking for in the list that displays, and click on Go.
The Oral Cancer Foundation has an excellent website at www.oralcancerfoundation.org where you can find detailed information about causes, symptoms, diagnosis, treatments, sources of support, and more. The Foundation was established by oral cancer survivor Brian R. Hill, a Vietnam war veteran and now a warrior advocate for those with oral cancer and their supporters. Here are a couple of quotes from the website."The Oral Cancer Foundation is a national public service, non-profit entity designed to reduce suffering and save lives through prevention, education, research, advocacy, and support. Oral cancer is the largest category of those cancers which fall into the head and neck cancer category. Common names for it include such things as mouth cancer, tongue cancer, and throat cancer. Each year in the US, approximately 30,000 people are newly diagnosed with oral cancer. ... This site will provide you with information about the rates of occurrence, risk factors which lead to oral cancer, treatments, current research, and current oral cancer related news."
"A patient / survivor forum is open to the public where those currently fighting oral cancer can gain insights and inspiration from those who have been there before them. A comprehensive resource list is also available to link you to other pertinent oral cancer data on the web and elsewhere for patients, caregivers, and the public."
As mentioned the site has an annotated list of other web resources relating to oral cancer and it's well worth browsing through the list for other websites that may be valuable for your particular needs.
The Mouth Cancer Foundation has a website at www.mouthcancerfoundation.org. There's plenty of information about oral cancers on this site for you to explore, and they also run an active forum here http://rdoc.org.uk/eve/, or you can get there via the link 'Message Board' on their home page.
They say the foundation "was established in June 2004 to provide support for mouth, throat and other head & neck cancer patients for the benefit of the public" and "The Mouth Cancer Foundation web site aims to help patients, carers and health professionals find free information on mouth cancers easily. It provides direct links to the relevant sections of existing cancer sites and includes patient experiences as well as an online support group."
The organisation Support for People with Oral and Head and Neck Cancer has a website at www.spohnc.org. "SPOHNC, is a patient-directed, self-help organization dedicated to meeting the needs of oral and head and neck cancer patients. SPOHNC, founded in 1991 by an oral cancer survivor [Nancy E. Leupold], addresses the broad emotional, physical and humanistic needs of this population." and "SPOHNC is proud to present its National Survivor Volunteer Network! This is a nationwide network of survivors who have volunteered to share their knowledge and provide encouragement and support for others going through this difficult time. Contact us for more information!" (quoted from their website).The American Head and Neck Society at www.headandneckcancer.org is an organisation mostly for professionals in the field and although it has a Patient Education section it's only in early stages of development but has the potential to be very good as they progressively draw on the wide expertise of their members. "On May 13, 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" (quoted from their website).
ACOR.org at www.acor.org hosts a mailing list called HEAD-NECK-ONC (The HEAD & NECK Cancers Online Support Group) with 427 subscribers when I checked on 12th July 2006. The direct link to it is http://listserv.acor.org/archives/head-neck-onc.html or you can go to ACOR's home page and click on the link 'Mailing Lists'.
ACOR also host the mailing list ORAL-ONC (The Oral Cancers Online Support Group) with 151 subscribers as at 14th July 2006. The direct link is http://listserv.acor.org/archives/oral-onc.html.
It would also be worthwhile searching through their alphabetical list of mailing lists to look for any other lists relevant to your needs.
The parotid gland is defined by the American Heritage Stedman's Medical Dictionary as "Either of a pair of major salivary glands situated below and in front of each ear and opening into the parotid duct; the largest of the major salivary glands". Dwight runs a website at www.patientsforum.com called The Patients Forum on Tumors Of The Parotid Gland "dedicated entirely to Parotid Gland Tumors and Surgery". If you have an involvement with a tumor of the parotid gland this website is a must to visit. The centrepiece is a very active forum or message board with many thousands of posts on it and a searchable archive. When you are on the home page be sure to click on the 'Site Map' link to see what else is on the website.
For information and support relating to the rare cancer Acinic / Acinar / Acinous Cell Carcinoma, I suggest going to the website Acinic Cell Carcinoma Information Centre at www.aciniccell.org. They say "This website has been developed by Edgar Stroke, a cancer patient who has been dealing with acinic cell carcinoma since the early 1980s. During that time he has had many experiences, both negative and positive, in dealing with the disease. He has also had an extremely unusual (and rare) large metastasis, which prompted him to begin serious research on this disease in 1993. Since then, Edgar has been researching the disease and treatment options, as well as experimenting with various treatments on himself. He has undergone numerous and various procedures over many years. Through these experiences, Edgar has also learned a great deal about the logistics of dealing with cancer, medical case management, financial medical matters, and so on. Edgar has developed this website so that others may benefit from his experiences and his ongoing research."
"Acinic / Acinar / Acinous Cell Carcinoma is a rare salivary gland cancer, comprising approx. 6%-10% of all salivary gland cancers. Salivary Gland cancers themselves only comprise between 0.3% and 0.9% of all cancers in the United States."
Edgar also runs a mailing list called the Acinic Cell (ACIN-CELL) email group hosted by ACOR.ORG. You can read about it and how to join (and about other relevant mailing lists) on this page www.aciniccell.org/email_groups.html or you can go to http://listserv.acor.org/archives/acinic-cell.html or find it from the www.acor.org home page.
The Adenoid Cystic Carcinoma Organization International is an all-volunteer organisation with a website at www.accoi.org. They say "Adenoid cystic carcinoma ("ACC") is a rare cancer that usually occurs in areas of the head and neck but can occur in other parts of the body as well. Both children and adults may develop ACC, although it occurs more often in adults over age 40."
"This website provides information about treatment, research, clinical trials, organizations offering help with medical expenses, and more."
"We maintain a free email Information Group where ACC patients and caregivers share all types of information about ACC in an atmosphere of support." When I checked on 11th January 2007 there were 749 members in the group. The direct link to the group is http://health.groups.yahoo.com/group/Adenoid_Cystic_Carcinoma_Organization/They also provide an online forum for doctors only, offering doctors interested in ACC an opportunity to share information about treatment and research.
There is a webpage called Adenoid Cystic Carcinoma Alliance at www.rare-cancer.org/adenoid-cystic-carcinoma which gives links to many websites relevant to Adenoid Cystic Carcinoma. The author is Adenoid Cystic Carcinoma of the Breast survivor Sharon Lane and she says "Adenoid Cystic Carcinoma (AdCC) is a very rare form of cancer that can exist in many different body sites. It most often occurs in the areas of the head and neck or the breast. It is sometimes referred to as adenocyst, malignant cylindroma, adenocystic, adenoidcystic, ACC, AdCC, or cribriform. These pages will give you access to information, research, patient database, and support from around the world."
ACOR.org at www.acor.org hosts a mailing list called ADEN-CYST The Adenoid Cystic Carcinoma Support Group (169 subscribers on July 15th 2006). The direct link is http://listserv.acor.org/archives/aden-cyst.html or you can find it by going to the ACOR home page and clicking on the link "Mailing Lists".
If you are a nurse working in the field of head and neck cancers, the British Association of Head and Neck Oncology Nurses web site at www.bahnon.org.uk would be worth checking out. They say "BAHNON exists to facilitate networking between nurses working within the field of head and neck cancer, in order to share ideas and promote good practice. ... On this site we aim to help nurses and AHPs share information on best practice, for example guidelines and patient information ideas. ... There's also access to a separate yahoo discussion group where you can network with other BAHNON members".
If you want to delve deeper into any aspect of cancer, a good source of information is Medlineplus at www.medlineplus.gov. It's a service of the U.S. National Library of Medicine and the National Institute of Health and it’s a big well-organised and easily searchable site. The link to the section on cancers is www.nlm.nih.gov/medlineplus/cancers.html and the link to their section on head and neck cancers is http://www.nlm.nih.gov/medlineplus/headandneckcancer.html.
NORD - the National Organisation for Rare Disorders - has a database of rare disorders on their website at www.rarediseases.org including many rare cancers. The database gives a list of alternative names for each disorder, some basic information about the disorder, and a list of organisations related to that disorder.
Cancercare is a large USA-based organisation "that provides free, professional support services for anyone affected by cancer." On their website at www.cancercare.org you can find some information resources, advice on such matters as financial assistance, and counseling services (online, telephone and face-to-face). There are also some online support groups or forums.
The website RxList at www.rxlist.com - self-described as “The Internet Drug Index providing fast, reliable information to both the consumer and the medical professional” - has information about hundreds of medicinal drugs and also active forums or discussion boards on the more popular drugs as well as forums for discussing less popular drugs and alternative therapies. The link to their forums index page is www.rxlist.com/rxboard.htm.
If you have concerns about fertility in relation to cancer and its treatment, go to this page www.bestcancersites.com/fertility for links to websites with information and support on fertility issues (and you can use your back button to return to this page).
There are links to lymphedema websites on this page www.bestcancersites.com/lymphedema (and you can use your back button to return here).
A good website for finding clinical trials relating to any type of cancer is the USA Government’s National Cancer Institute site at www.cancer.gov - go to their home page and click on the link Clinical Trials, or click on this direct link www.cancer.gov/clinicaltrials.
There’s another USA Government website called ClinicalTrials.gov at www.clinicaltrials.gov where you can search for trials. “ClinicalTrials.gov offers up-to-date information for locating federally and privately supported clinical trials for a wide range of diseases and conditions” and “ClinicalTrials.gov currently contains approximately 12,600 clinical studies sponsored by the National Institutes of Health, other federal agencies, and private industry. Studies listed in the database are conducted in all 50 States and in over 100 countries. ClinicalTrials.gov receives over 4 million page views per month and hosts approximately 17,000 visitors daily.”
I suggest starting your search for clinical trials with the National Cancer Institute site at www.cancer.gov and then trying the ClinicalTrials.gov site. I don't know if ClinicalTrials.gov includes the same database as the NCI site but it doesn’t use the same search form so it might turn up something different anyway. Both sites include trials around the world as well as those in the USA.
You could also try the “American Cancer Society /EmergingMed Clinical Trials Matching Service ... This free Clinical Trial Matching and Referral Service is made available to American Cancer Society visitors through a collaboration with EmergingMed. ... Fill out one questionnaire and within seconds you'll know if your profile matches any clinical trials in our system. The EmergingMed database contains more than 3,000 clinical trials for treatment, prevention and early detection of cancer.” Look for the link to clinical trials on the home page of the American Cancer Society or try this direct link http://clinicaltrials.cancer.org .
There are links to nutrition and excercise guidelines on this webpage nutrition and excercise guidelines.
For anyone considering trying an alternative treatment for cancer (one that is not mainstream medicine and scientifically demonstrated to be safe and beneficial) the website Quackwatch has a very good section on their site called “A Special Message for Cancer Patients Seeking "Alternative" Treatments”. It will help you decide whether an alternative treatment you are considering is safe and might be beneficial in some way, or whether it might be unsafe and/or fraudulent. The direct link is www.quackwatch.org/00AboutQuackwatch/altseek.html or you can find the link on their home page at www.quackwatch.org.
The American Cancer Society website has a valuable section called "Complementary and Alternative Therapies". It's buried deep in their website and difficult to find - there's no link to it from their home page. Try this direct link www.cancer.org/docroot/ETO/ETO_5.asp?sitearea=ETO or else put the word alternative into the search window on the home page and look for a link to the section in the search results. If you're thinking of trying a specific alternative or complimentary treatment you've come across on the internet or elsewhere you may find information about it in this section.
Another website that discusses the subject of alternative treatments in some detail is the website of the National Center for Complementary and Alternative Medicine at www.nccam.nih.gov.
The American Cancer Society has a very good information page giving advice on how to use the internet for finding information on cancer, and how to determine if that information is reliable. The direct link to it is Cancer Information on the Internet.
More suggestions please
If you know of any other good head and neck cancer websites large or small, or active forums (message or discussion boards) or mailing lists on head and neck cancers you would like to see added to this page, or you find any errors or broken links, please send me an email at everest@bestcancersites.com
Ed Everest, Adelaide, Australia
Page updated 8th September 2006
Australian Head and Neck Cancer Websites
I'm not aware of any websites based in Australia devoted to head and neck cancers.
There are annotated links to Australian general cancer websites on this webpage Australian general cancer websites (it opens in a new window). Please do check it out - you'll find websites listed there with a wide variety of information relevant to Australia (including lists of support groups and treatment centres) that you won't find on the websites described above.
More suggestions please
If you know of any other good head and neck cancer websites large or small, or active forums (message or discussion boards) or mailing lists on head and neck cancers you would like to see added to this page, or you find any errors or broken links, please send me an email at everest@bestcancersites.com
Ed Everest, Adelaide, Australia
Page updated 8th September 2006
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