A guide to the world’s best mesothelioma websites
for information and support

This is a summary of the best websites I could find around the world for mesothelioma and other asbestos-related cancers, both for general information (symptoms, treatment options, research, etc) and for forums (message or discussion boards) and other kinds of support. There is also a separate webpage on lung cancer websites here. For those living in Australia there is information about Australian websites here.

There are now many mesothelioma websites on the internet, but most of these have been set up by law firms with a financial interest in mesothelioma. For some words of caution on searching for support and information for mesothelioma and other asbestos-related diseases, please click here.

One of the best sources of reliable information on mesothelioma is the website of the USA Government's National Cancer Institute at www.cancer.gov. The section devoted to mesothelioma gives an easy to read and easy to understand description of what this cancer is, how it is diagnosed, treatment options, descriptions of treatments, and more.

To locate the sections on mesothelioma, go to their home page, find the heading “Types of Cancer” and click on the link “A to Z List of Cancers” and find Mesothelioma. Or try this direct link www.nci.nih.gov/cancertopics/types/malignantmesothelioma

The American Cancer Society, a voluntary organisation, runs one of the most comprehensive websites on cancer and cancer-related matters on the net. Their address is www.cancer.org. To locate their section on mesothelioma, find and click on the link "Choose a cancer topic" on their home page and choose Malignant Mesothelioma from the list that displays, and click on Go. Or try this direct link www.cancer.org/docroot/CRI/CRI_2x.asp?sitearea=&dt=29.

They have plenty of general information about cancers and various support options too including their original lung cancer forum at www.acscsn.org/Forum/Discussion/?msgrid=4 and their new lung cancer forum. There's a list of the forums they are running on the forums index page. Their website has many other resources for those involved with cancer so it's well worth browsing their site for additional information and support that may be relevant to your situation.

The United Kingdom website Cancerbackup at www.cancerbackup.org.uk is another reliable source of information on mesothelioma. Their section on mesothelioma starts on this page www.cancerbackup.org.uk/Cancertype/Mesothelioma.

Another United Kingdom website is Mesothelioma UK at www.mesothelioma.uk.com. Some of the information about such matters as benefits relates specifically to the UK only.

If you are looking specifically for forums and a support community relating to lung cancer and to mesothelioma, by far the most active site is called Lung Cancer Support Community, now on the LUNGevity Foundation website, at www.lungevity.org/l_community/index.php. This is the site I recommend going to first for forums with a world-wide reach. One of their forums is called NSCLC & MESOTHELIOMA. They have over twenty other forums and a chat room and when I last visited the site on 28th May 2008 they had 340,930 posts and 4,200 registered users. They would welcome your posts on mesothelioma.

The Mesothelioma Applied Research Foundation (MARF) is a USA-based organisation dedicated to eradicating mesothelioma. Through their scientific peer-reviewed grant program, they are advancing the research needed to improve mesothelioma detection, prevention and treatment. MARF has now awarded over 5 million dollars to support highly innovative, promising research. They tell me this is the USA's only independent, merit-based support for mesothelioma research.

Their website at www.marf.org is one of the best mesothelioma websites on the internet and one of the few not owned or sponsored by law firms or medical facilities. Here's some background information from their site.
"As an IRS certified nonprofit organization, we have no financial or commercial relationship with any drug company, medical center, physician, researcher, law firm or asbestos company (although we seek to involve all these groups in our mission), and our only source of income is voluntary, tax-deductible contributions. Our mission is to eradicate mesothelioma by: funding the research which is the most high quality and promising, as determined by our medical experts; helping patients obtain information on their treatment options which is completely up-to-date and unbiased; and advocating in Washington D.C. for the federal mesothelioma research funding necessary to stop this national tragedy."

There's a message board (forum) on their website - I haven't checked it out so I don't know how active it is.

The MARF site is a must to visit and explore for anyone involved with mesothelioma. On every page you can feel their energy and their determination to beat mesothelioma no matter what it takes.

New entry 18th July 2008: Asbestos Disease Awareness Organization ADAO is a US-based organisation with a website at www.asbestosdiseaseawareness.org. They say "ADAO seeks to give asbestos victims and concerned citizens a united voice to help ensure their rights are fairly represented and protected, while raising public awareness about the dangers of asbestos exposure and often deadly asbestos related diseases. ADAO is an independent organization funded through voluntary contributions and staffed by volunteers". Cofounder Linda Reinstein is the current ADAO executive director.

Among other activities they work to educate the public and politicians about the dangers of asbestos, lobby members of congress to ban asbestos-containing products altogether, and they provide an independent resource for the press, congress and medical community.

They give the following pledge: "As an independent organization, Asbestos Disease Awareness Organization will not be influenced by outside sources such as drug companies, law firms or companies that manufacture or use asbestos. ADAO is fully funded through voluntary contributions and staffed by volunteers."

Mailing lists provide another way of getting in touch with others involved with lung cancers and mesothelioma and for sharing information and support. The Association of Cancer Online Resources (ACOR) runs a mailing list called MESOTHELIOMA (Cancer) Support & Information (265 subscribers on 4th June 2008). You can find the list by going to the home page of the ACOR website at www.acor.org and clicking on the link 'Mailing Lists', or try this direct link http://listserv.acor.org/archives/mesothelioma.html. It may also be worth searching through their index of mailing lists to look for any other lists you may find it useful to join.

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 mesothelioma is www.nlm.nih.gov/medlineplus/mesothelioma.html.

Other websites you may find valuable

Cancerbackup at www.cancerbackup.org.uk is "The UK's leading cancer information site: your one-stop site with over 6,000 pages of up-to-date cancer information, practical advice and support for cancer patients, their families and carers."

They've recently started a social networking site called What Now at www.whatnow.org.uk "... a cancer community that really lets you get in touch with other people affected by cancer. Chat in the chatrooms, discuss on the forums, send private messages, upload videos and pictures ...".

There's also a section on the Cancerbackup website called Teen Info on Cancer "...easy to understand cancer information written for young people" and a social networking cancer community for teens. You can find links to these on the Cancerbackup home page.

If you live in Canada I suggest checking out the Canadian Cancer Society website at www.cancer.ca and searching for information and resources relevant to Canada and your local region. The website comes in both English and French language versions.

There are links to lymphedema websites on this page www.bestcancersites.com/lymphedema.

Various cancer treatment centres and medical teams around the world have set up websites to provide information on their facilities and services, and they may have quite detailed information about various kinds of cancers and their treatments. If you visit their websites it pays to be aware they are promoting their own particular facilities and treatments. Nevertheless their websites can be valuable sources of information as they are right at the coal face for treatment and research. Two good ones to explore are the Dana-Farber Cancer Institute in the USA at www.dana-farber.org and the Sidney Kimmell Comprehensive Cancer Center at Johns Hopkins in the USA at www.hopkinskimmelcancercenter.org. There's a list of USA cancer centers with links to their websites on this page of the National Cancer Institute website www.cancercenters.cancer.gov/cancer_centers/cancer-centers-names.html.

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.

Websites created for adolescents-teens and young adults with cancer There are a small but growing number of websites created specifically for adolescents-teens and young adults with cancer. If you're in one of these age groups and you've been diagnosed with cancer, I suggest making the website of the I'm Too Young For This! Cancer Foundation at www.imtooyoungforthis.org one of your first ports of call, exploring the site, and checking out their comprehensive list of other cancer-related internet resources for adolescents-teens and young adults. Look for the heading "Support Channels" on the home page: "The channels below will connect you with hundreds of age-appropriate resources and open the door to socially network with countless thousands of young adult survivors and caregivers". I'm Too Young For This! also has a presence on several social newtworking websites including Facebook at www.facebook.com/group.php?gid=2255009406 and Myspace at www.myspace.com/imtooyoungforthis. The Foundation and website is the creation of concert pianist and composer Matthew Zachary who at the age of 21 was diagnosed with brain cancer. Not only has he continued his musical career since his diagnosis but he's turned some of his creative energies to developing the I'm Too Young For This! Foundation and website as a "...survivor-led advocacy, support and research organization working exclusively on behalf of survivors and care providers under the age of 40". Here's an estimate given on the I'm Too Young For This! website of the numbers of people in the adolescents-teens and young adult age groups affected by cancer in the USA alone. You can multiply these figures by twenty to get an idea of the numbers for the entire planet. "... there are (in the US) in excess of 1,000,000 young adults aged 15-39 currently living with through and beyond their cancer diagnosis and treatment. This statistic also includes long-term survivors of childhood cancer. Furthermore, if you add adults over 39 who were diagnosed as young adults or , we're looking at nearly two million people. ... But wait! There's more! Survivorship is not just about the patient! Caregivers matter, too! So, if you now account for young adult spouses, siblings, children and parents, we're pretty much talking eight figures of people (>10,000,000)." So if you're in the adolescents-teens or young adult age groups and you've been diagnosed with cancer at some time in your life, you aren't alone! Realtime Cancer at www.realtimecancer.org is a Canadian organisation and website for young adults involved with cancer. It was established in 2000 by Geoff Eaton who was diagnosed in 1998 at age 22 with leukemia. Among the resources on the website there are many survivor and supporter profiles or stories, a forum, news and articles, and a list of the different support groups in Canada specifically focused on young adults (look for the thread in their forum titled "Local Young Adult Support Groups!"). They also run a public education program. There's plenty on their website that will be of interest to young adults with cancer wherever they live in the world, and to those working to improve services and support for young adults with cancer. Patty has created a comprehensive website called the Pediatric Oncology Resource Center at www.acor.org/ped-onc, for parents, friends, and families of children who have or had childhood cancer. There's a wealth of information on her site, including an annotated list of links to many teen and some young adult web sites and support groups on this webpage www.acor.org/ped-onc/cfissues/teens.html. Planet Cancer is a USA-based organisation and website for young adults with cancer. It was founded in 1995 by Heidi Adams, Robin Blue and Paul Cox who were all wrestling with cancer in their twenties at the time. The Planet Cancer website at www.planetcancer.org mixes irreverance and humour with support including forums and chat, information and news and retreats, and social networking. Reducing the isolation many young adults with cancer feel is a key aspect of Planet Cancer's mission. They provide information on various ways for young adults with cancer to connect with each other, including: "A clearinghouse for [list of] young adult groups around the country [USA], including official support groups, camps and more informal gatherings. Let us know about your local group, so that we can spread the word to others in your area" ... ... a list of "Camps around the country that hold sessions specifically for young adults with cancer. Some of these are provided free of cost to cancer survivors and their families" ... ... "if you're looking to connect with another cancer survivor on a more personal basis than you could online or in a support group ... Several matching services exist for young adults going through cancer who would like to meet or talk to someone else who has had a similar experience. If you want to get REALLY personal there's also an online dating community!". Planet Cancer has recently added a valuable new resource that's bound to be popular - a social networking site for young adults with cancer at http://myplanet.planetcancer.org. Members can join groups or form their own groups, share photos and videos, participate in the forums and chat, and run their own blogs. Planet Cancer also has a presence on Facebook at www.facebook.com/group.php?gid=4614089667. The big United Kingdom based website www.cancerbackup.org.uk has a section on cancer for teenagers including a teens social networking cancer community "Write a blog, chat on the forums, send messages, make friends - you can do all this and much more ...". Look for a link to TIC on their home page or try this direct link www.click4tic.org.uk. If you explore the websites I've described above, including their links and resources pages, you'll find a variety of other websites and resources relevant to adolescents-teens and young adults with cancer.

New entry 18th April 2008: The website Chemocare.com at www.chemocare.com is described as "designed to provide the latest information about chemotherapy to patients and their families, caregivers and friends. We are here to help by supplementing what you may already have learned from your healthcare professional". If you're involved with chemotherapy either as a patient or as a supporter, caregiver or health provider, I suggest visiting this site and exploring for information that may be relevant to your situation.

There are easy-to-understand sections called "What is Chemotherapy", "Managing Side Effects", "Eating Well During Chemotherapy", "Before and After Chemotherapy", "Complementary Medicine" and "Survivor Experiences". There's also an active message board (forum) where you can share information, experiences and support.

In the section "Chemotherapy Drugs" there is an A to Z list of chemotherapy drugs which includes detailed information about what each drug is used for, how it's administered, side effects, and how the drug works.

They cast their net fairly widely. They say "Sometimes referred to simply as "chemo", chemotherapy is used most often to describe drugs that kill cancer cells directly. These are sometimes referred to as "anti-cancer" drugs or "antineoplastics." Other chemo drugs such as biologic response modifiers, hormone therapy, and monoclonal antibodies, which work in different ways to treat cancer, are included in this web-site. Today's therapy uses more than 100 drugs to treat cancer."

Chemocare.com is a website of the Cleveland Clinic Taussig Cancer Institute (a cancer hospital in the U.S.).

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.

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 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 at www.cancer.org or try this direct link http://clinicaltrials.cancer.org.

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.

NORD - the National Organisation for Rare Disorders - on their website at www.rarediseases.org has a database of rare disorders 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.

Daily Strength at www.dailystrength.org is a new website devoted to hosting support communities "for all health issues & life challenges". They say "DailyStrength was built to enable people facing life challenges to: a) simply and easily communicate their progress with friends, family, supporters, and have those people respond with encouragement and help. b) find others facing the same circumstances, and exchange experiences, treatments and even hugs within a safe community setting." Currently there are thirty-eight support communities for different kinds of cancers (including some poorly represented elsewhere on the internet), and communities for many other health issues you may be interested in such as lymphedema and fertility matters. The website is well set out and participation in communities is simple. You can post messages, and keep a journal and upload photos and videos if you wish.

There are links to nutrition and excercise guidelines on this webpage nutrition and excercise guidelines. It says in part "It would be pretty safe to say that the basic principles of healthy diets and good excercise are now well understood by scientists, and the information is available in the form of easy to understand nutrition and physical activity guidelines on the internet and in print. If we want to get our general eating and excercise habits up to world's best practice for humans going about their everyday lives on planet Earth, we can do it using these guidelines, adjusting the information to suit our particular circumstances."

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 at www.cancer.org 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.

CaringBridge at www.caringbridge.org and CarePages at www.carepages.com are two websites that enable you to create your own free personalised webpages and develop your own internet community for yourself or someone you are supporting. These websites are very popular and worth checking out if you or someone you know has been visited by cancer and would like a rallying place on the internet.

Don't know what a cancer-related word or term means or need to check spelling? The National Cancer Institute (US) has an online cancer dictionary with more than 4,000 terms related to cancer and medicine at www.cancer.gov/dictionary.

You can find guides to the best websites for other cancer types on my website www.bestcancersites.com.

Words of caution

Some law firms and persons engaged in legal practice, have set up websites on asbestos-related illnesses including mesothelioma, and it's not difficult to figure out why they may be doing this. In fact most mesothelioma websites now appear to be of this kind, which makes it difficult to find websites giving information that is independent of sources with a financial interest in asbestos-related diseases. What makes it even more difficult is that some of these websites appear to have been designed to look like sites set up by support groups. They have names like 'Mesothelioma Support and Information Website'. There may be no hint on the home pages that these websites may have been set up for the primary purpose of getting your business.

So please do look to see who owns or sponsors any mesothelioma websites you may find on the internet, and if it's a law firm or similar, be a bit wary because they may want your business in relation to any compensation or other asbestos-related legal matters. If there's no useful information on a website about owner or sponsors you can assume it's probably owned or sponsored by a law firm or other commercial entitiy of some kind.

If they give a link to or recommend only one law firm or person for legal and compensation matters, you can draw your own conclusions as to who might own or sponsor the site. And remember that if you send them an email, telephone number or postal address for whatever reason, then they have a means of approaching you directly. There are various law firms and legal representatives you can do asbestos-related business with, so there's choise and you can look for the one that offers you the best service for your particular circumstances.

But having said that, some individuals and firms engaged in the business of law have been at the forefront of great strides made in gaining public, political and legal recognition of the health problems relating to asbestos and in gaining compensation for those affected by asbestos diseases, and they deserve a great deal of credit for that.

For those with an asbestos-related illness and their supporters it's obviously important to know the sources of information they find on the internet, and I look forward to the day when all websites with information on asbestos diseases clearly state who the owners and sponsors of the websites are, and what are the sources of the information they provide.

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More suggestions please

If you know of any other good mesothelioma and other asbestos diseases websites large or small, or active forums (message or discussion boards) or mailing lists on mesothelioma and other asbestos diseases 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 4th June 2008

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Australian Mesothelioma Websites

Before I list websites in Australia, I should point out that some Australian asbestos diseases websites have an association with one or other of several law firms, whether or not this association is described on the website. If you send personal information including contact details to an Australian asbestos diseases website, or go to any asbestos diseases support group mentioned on those websites, you may be approached by a law firm or representative soliciting your business.  

There is competition among law firms in Australia for work on compensation claims and other financial matters relating to asbestos diseases. If you want legal representation you can if you so desire approach more than one well-known law firm with track records in the field of asbestos-related diseases and see which one offers the service that best suits your particular needs. Maybe you have a family or personal solicitor who can help you choose.

Australia has a long history of asbestos mining and processing, and a very widespread use of products containing asbestos in industry and in homes and other building. So it's perhaps not surprising that the history of asbestos use and its health consequences, political and legal aspects including the fundamentally important matter of compensation where it is due, and support for those with asbestos-related diseases, are rather tightly interwoven in Australia at present.

If you are an Australian new to the subject of mesothelioma or other asbestos-related cancers and their treatment and looking for information on the internet, I suggest reading through the relevant sections of the websites of the USA Government's National Cancer Institute, the American Cancer Society and Cancerbackup. You can find links to these near the top of this page. Although the information is not specific to Australia, it will give you a good grounding in the subject. And you can explore the Australian websites for information and support specific to Australia.

The Asbestos Diseases Foundation of Australia ADFA has a website at www.adfa.org.au. The site includes information about asbestos diseases, current news about asbestos-related matters, and details of several regional or local support groups in New South Wales and Canberra on this page www.adfa.org.au/supportgroups_70.html.

The Asbestos Diseases Society (of Australia) ADS has a website at www.asbestosdiseases.org.au. Their site includes information on asbestos products, asbestos in the community, legal and compensation aspects, and information specific to Western Australia including the mining of blue asbestos at Wittenoom.

The Asbestos Diseases Society of Victoria (ADSVIC) with a website at www.adsvic.org.au "is a registered not-for-profit organisation which provides counselling, support, referral, information and advocacy services for those who develop asbestos-related diseases and for their families and carers". 

They have recently opened a discussion forum (message board) which is a welcome addition to online support services for Australians with an asbestos diseases involvement. There's a link to it near the bottom of their home page. If you post onto any of the overseas forums I've mentioned on this page, please post onto this Aussie forum too - not only will you help yourself by posting there but you will help many other Australians who are in need of local support and sharing information. 

Another information and support group in Victoria is the Gippsland Asbestos Related Disease Support Inc. (GARDS) with a website at www.gards.org. "Welcome to Gippsland Asbestos Related Disease Support Inc. (GARDS), a non-profit, non-government, voluntary organisation dedicated to supporting the victims of asbestos and their families. GARDS also works to raise the level of asbestos awareness in the community, industry and at all levels of government."

Among the resources on their website are newsletters you can download going back to 2003, and links to various sources of information relating to asbestos and its handling and dangers.

The South Australia organisation The Asbestos Victims Association (SA) Inc has a website at www.avasa.asn.au.  "AVA began in 2000 to meet an unfilled need for a service which could offer support, information and counseling for anyone suffering from an asbestos related disease, along with their families. We have many volunteers who are travelling the asbestos victim’s journey. There are sufferers, carers, friends and family so there’s always someone who can share the load with you. We visit victims at home, in hospital or wherever the need occurs.We also do Awareness Seminars and information meetings around the state each year, primarily throughout the regional areas, sometimes with the assistance of Safework Inspectors, medical advisers and local spokespersons." They also issue a newletter and run support group meetings.

Another South Australian organisation is The Asbestos Diseases Society of South Australia (ADSSA) with a website at www.adssa-inc.com.au. Among their services ADSSA employs a part time social worker who provides a counselling service to those suffering asbestos conditions, holds monthly support meetings, distributes a monthly newsletter, and contributes to educating the public about the dangers of asbestos. 

There's a support group in Queensland called the Queensland Asbestos Related Disease Support Society Inc. (QARDSS) with a website at www.asbestos-disease.com.au. They say QARDSS "is a self-funded organisation that aims to provide people affected by asbestos related disease and their families with emotional support as well as contacts for the best possible medical treatment and other relevant assistance".

The services they provide include the Milton Clarke respite house, a newsletter, hosting various events including Asbestos Awareness Seminars, and the Friends of QARDSS Support Group run morning teas at five locations in Queensland.

A reminder that if you are looking specifically for forums and a support community relating to lung cancer, by far the most active site is called Lung Cancer Support Community, now on the LUNGevity Foundation website, at www.lungevity.org/l_community/index.php. This is the site I suggest going to first for forums with a world-wide reach. One of their forums is called NSCLC & MESOTHELIOMA. And for Australian information and support post onto the Asbestos Diseases Society of Victoria (ADSVIC) forum - there's a link to it on their home page at www.adsvic.org.au.

The Victorian Government's Better Health Channel website has information on mesothelioma on this webpage  www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Mesothelioma?OpenDocument.

The Australian Lung Foundation runs a website at www.lungnet.org.au.  "The Australian Lung Foundation (ALF) is a not-for-profit Public Benevolent Institution with Medical and Support Group representation in every state and territory in Australia." "Our vision is to be a key agent of change in Australia bringing about the understanding, management and relief of lung disease." It's a pretty basic website, but it does have some useful information on it including lists of lung condition support groups in each state. If there isn't a mesothelioma support group in your area there may be a lung conditions support group.

If you browse the links and resources pages of the Australian websites I have listed above, you can find links to government and non-government websites that cover various other aspects of asbestos in Australia, including current and pending laws and regulations relating to the handling and disposal of asbestos, links to asbestos removalists, training courses for those who encounter asbestos in their work environments, and much else.

I don't know the actual figures but I would guess that millions of Australians are still living or spending time in buildings containing tobacco products and millions of Australians are still living or spending time in buildings containing asbestos products.

Other Australian websites you may find valuable

The biggest cancer-related organisation in Australia is "Cancer Council Australia" - an umbrella organisation that encompasses a Cancer Council based in each state and territory. The link to their home page is www.cancer.org.au where there is a variety of information relating to cancer in Australia, and links to each state-based Council website.

The state-based Council websites are valuable sources of information about locally-based support groups, and a variety of other services they may offer, such as phone-in support, peer support, and discussion of different kinds of treatments. You can find links to the state and territory Cancer Council sites here www.cancer.org.au/aboutus/ourmembers.htm. If you are looking for a cancer support group in your area you may be able to locate one by searching on your state or territory Cancer Council website.

The Cancer Council New South Wales runs a large website at www.cancercouncil.com.au and it's well worth checking out whether or not you live in NSW.

The Cancer Institute (NSW) was established in 2003 by an act of parliament called The Cancer Institute (NSW) Act 2003. Some of its objectives as stated in the Act are "to reduce the incidence of cancer in the community ... to improve the quality of life of cancer patients and their carers ... to operate as a source of expertise on cancer control for the government, health service providers, medical researchers and the general community".

Their website is at www.cancerinstitute.org.au. "The Cancer Institute NSW is Australia's first statewide, government supported cancer control agency." They have developed a Cancer Services Directory which "aims to bring together information on treatment, services and support for patients and their carers". It includes the following publications:
- an online listing of cancer treatment centres in NSW;
- "A-Z Directory of Support Groups 2005 (4.9mb PDF): A list of support groups operating in suburbs, towns and cities throughout New South Wales and the services they offer";
- "Accomodation Guide 2005 (636kb PDF): A directory of accommodation providers near to all the major cancer treatment centres in New South Wales";
- "A-Z Directory of Cancer Publications 2005: Lists over 200 cancer publications, a summary of each brochure's contents and details of how to obtain them."

There are some other publications including The Cancer Prevention Plan ("This booklet provides simple guidelines to help reduce your risk of cancer"), cancer statistics for NSW, the NSW Cancer Plan 2007 - 2010, news releases, and a variety of other information for patients, researchers and health professionals.

They also run a website called CI-SCaT (Cancer Institute NSW Standard Cancer Treatments) here 
"Welcome to CI-SCaT ... One goal of the NSW Cancer Plan 2007-2010 is to ensure that clinical practice is evidence-based and research driven. This site provides clinicians with chemotherapy cancer protocols, including the evidence, cost, and drug dose calculation. In addition, patients and their carers can find detailed information on their treatments and its side-effects."

For anyone involved with cancer in Australia and looking for information on the internet, whether you've been diagnosed with cancer, or are a medical professional, a provider or a researcher, I suggest visiting the Cancer Institute NSW website and browsing or searching for information that may be helpful to you. Their site map page is at www.cancerinstitute.org.au/cancer_inst/sitemap.html.

Info and support for young adults (18 to about 40) with any kind of cancer in Australia Two new organisations aiming to help young adults with cancer and their supporters Australia-wide are the I'm Too Young For This! Cancer Foundation and The Warwick Foundation. They are working to provide information and support that meets the needs and addresses the problems of young adults with cancer, provide social networking, and encourage the medical and related professions and support services to recognise younger adults as an age group with specific and unique needs. They are aiming to reach as many young adults with cancer as possible. These are pretty awesome challenges as you can imagine, and if you can help in any way they would welcome your input. The I'm Too Young For This! Cancer Foundation (based in the USA) runs a group on Facebook called i[2]y Down Under, created by Shari Falls, at this address www.facebook.com/group.php?gid=8492024091, for young adults age 18 to 40. They say: "Sign up if you'd like to socially network with other young adults via hip, non-clinical and non-threatening events like a bbq and beer, happy hours, cocktail parties and road trips. Stupid Cancer!" "The focus of i[2]y Down Under is to promote the awareness of young adults, and to advocate on behalf of thier struggles, challenges, needs, desires and goals." There's more about the I'm Too Young For This! Cancer Foundation further up this page here (you can use your back button to return to this point). Shari has also started a i[2]y Down Under group on MySpace at http://groups.myspace.com/i2yDownUnder. New entry 24th July 2008: i[2]y now has its own Australian social networking website called i2y Australia, at www.i2yaustralia.ning.com. If you're a young adult with cancer in Australia (or a supporter) this networking website is a must to check out - joining is simple and once you're in you'll have plenty of fellow young Australians to communicate with. 'In My Shoes' - The Warwick Foundation - is a new non profit charitable organization in Australia focusing on supporting young adults (18-40) years on their cancer journey. It was founded by Samantha Lehmann who lost her 35 year old brother Warwick to cancer in 2005. "In memory of my Brother who loved music, his friends, his family and his life, I have set up The Warwick foundation, I believe together we can fight and make a difference for young adults on their cancer journey". The Foundation's website address is www.thewarwickfoundation.org.au, and the Foundation also has a presence on Myspace at www.myspace.com/thewarwickfoundation and Facebook at www.facebook.com/group.php?gid=2765515350. Among other activities the Foundation is advocating for a new model of care for adolescents and young adults with cancer, conducting fund-raising events, and connecting young adults on the cancer journey through their 'Find a mate in your shoes' program. Nikki has started an Australian networking group on the Planet Cancer website called "Australian Network for Young Adults with cancer". It's address is www.myplanet.planetcancer.org/group/australiannetwork. She says "Lets band together and push for better cancer support services in Australia for YOUNG ADULTS up to 40+ years!". She's particularly keen to hear from any young adults in Australia (and their supporters) who've been diagnosed with cancer, about their good and bad experiences of cancer treatment and support services, and their opinions as to how services for young adults can be improved. There's a forum on the group's webpages where you can post your experiences and opinions. CanTeen is a national support organisation for young people aged 12-24 living with cancer. Here's a couple of quotes from their website: "CanTeen has nine offices throughout the country, supporting thousands of young people living with cancer. Each Division has an office, dedicated (and very cool) staff, and a hugely important committee driven by CanTeen Members. They each run their own programs and camps, sometimes coming together to run joint activities and providing the opportunity for Members to broaden their peer networks." "Ranging from week-long summer camps in picturesque locations around Australia for up to 100 CanTeen Members, to locally-based programs focused on the specific needs of different groups of young people living with cancer, CanTeen offers its Members a comprehensive range of support options. Nothing reduces isolation like spending positive time with someone else living in a similar situation." You can find further details of their programs and other services they offer at www.canteen.org.au. Within their website they have established The Adolescent and Young Adult Cancer Group. They say "Adolescents and Young Adults (AYA) with cancer are the lost generation ... when it comes to research, treatment and support - not only in the Australia/New Zealand region but internationally. However, there is now growing momentum for change in the way we treat and support AYA with cancer. The AYACG is an informal interest group for people interested in receiving information and news relating to improving care for adolescents and young adults with cancer. Our primary focus is the Australia and New Zealand region, but all are welcome to join." For more info or to join the group, look for a link to "AYACG site" on Canteen's home page. The Peter MacCallum Cancer Centre in Victoria has a program for adolescents and young adults with cancer, called onTrac@PeterMac. Their website address is www.petermac.org/ontrac/. "Any young person undergoing cancer care in Victoria is eligible to access the services of the onTrac@PeterMac program". The age range of those eligible is currently 15 to 25 years. They say: "In recognition of the unmet needs of adolescents and young adults (AYA) with cancer, and as part of its commitment to advancing oncology services, the Peter MacCallum Cancer Centre has pioneered an Australian-first cancer service for AYA called onTrac@PeterMac. It aims to provide optimal treatment, care and support for AYA with cancer and ultimately improve survival rates." There's further information about OnTrac@PeterMac in an i[2]y Down Under Facebook group discussion board thread here www.facebook.com/topic.php?uid=8492024091&topic=3873. As mentioned elsewhere in this Australian websites section, in late May 2008 the Leukaemia Foundation launched a network for young adults called Revive with a website at www.teamrevive.org. They say "Currently, the Leukaemia Foundation is developing a program throughout Australia to provide education and support to young people and their friends and familes affected by blood cancer. It will focus on evidence-based research to ensure the highest quality of care is available for young adults." Revive is "... intended to be a portal for young people to access information, relevant contacts, share stories and network with each other". Revive is in early stages of development and they are encouraging young adults and their families and friends to help define the direction of development. If you're a young adult with a blood cancer or a supporter please do explore the Revive website. There's a group of online forums where you can share information and support with fellow Aussies, and maybe contribute your own ideas to the development of Revive.

There's a valuable annotated page of useful links relating to cancer on Denis Strangman’s website 'The Canberra One-Stop Cancer Web-Shop' "Dedicated to helping cancer patients and carers in the ACT and NSW Southern Area health region locate reliable web resources of interest to them." Its address is www.hotkey.net.au/~string/listing.htm - scroll down the home page to find the list of links. Some of the links it lists are to Australia-wide and international sites so it’s worth a visit wherever you are in Australia.

"Look Good...Feel Better" at www.lgfb.org.au.
"... a free community service program dedicated to helping women undergoing treatment for cancer. The purpose of the program is to help women manage the appearance related side effects of chemotherapy and radiotherapy, thereby helping to restore their appearance and self image.
Look Good...Feel Better is an initiative of the member companies of the Cosmetic, Toiletry and Fragrance Association of Australia, (CTFA) who established the program in Australia in 1990. Since that time over 32,000 women living with cancer have been helped by the program."

Camp Quality's website at www.campquality.org.au : "Camp Quality is a non profit organisation that is committed to bringing hope and happiness to every child living with cancer, their families and communities through ongoing quality recreational, educational and financial support programs." To register "You must be between the ages of 0-18 years and have been diagnosed with cancer". ... "Camp Quality is an international charity with the first office being established in 1983 in Sydney, Australia. There are 14 offices throughout Australia covering every state and territory. Over 5,000 families each year are supported by Camp Quality; they participate in our camps and other activities. Nationally there will be approximately 185 camps and recreational activities held in Australia in 2005."

Petrea King on the Petrea King Quest for Life Centre and Quest for Life Foundation website at www.questforlife.com.au says "Providing services that assist people to reconnect with their spirit and establish peace in their lives has been my passion since my recovery from leukaemia in 1984. Together with a dedicated team of health professionals, we have been providing services for people living with the challenges of serious, chronic and life-threatening illness, grief, loss and trauma since 1985."
"The Quest for Life Centre was established in its own premises in 1998 in beautiful Bundanoon in the Southern Highlands of NSW, Australia."

Elsewhere on the website it says "The Quest for Life Foundation was established in 1990 by Petrea King to further her work. Since her recovery from leukaemia in 1984, Petrea has devoted her life to counselling people, facilitating support groups, running residential programs and lecturing widely on health and healing."

You can find details of the Foundation and Centre and their upcoming programs on the website, and you can also listen to some of her past radio interviews on the ABC. 

The Gawler Foundation was established as a non-profit organisation in 1983 by Dr Ian Gawler following his recovery from bone cancer. "The Gawler Foundation is committed to an integrated approach to health, healing and wellbeing that includes the body, emotions, mind and spirit. We call this integrative medicine. Our mission is to work within a integrative medical framework to provide access to the best possible instruction and support for the implementation of self-help techniques."

They run the Yarra Valley Living Centre near Melbourne and offer both residential and non-residential programs. You can read about the Foundation and what it has to offer on their website at www.gawler.org "

The Cancer Council NSW has a good Recommended Reading List page on their website for books on cancer, and some links to cancer-related websites too. “We're often asked to recommend good books and websites about cancer. Here is our selection.” The direct link to the page is www.cancercouncil.com.au/editorial.asp?pageid=721

Can Assist (Cancer Assistance Network) formerly known as the Cancer Patients Assistance Society of NSW  "... helps cancer patients, predominately from rural NSW, by providing accommodation, comfort, financial assistance and emotional support for patients and their carers."
"For 50 years, Can Assist, the Cancer Assistance Network, has been caring for NSW cancer patients and their families through a network of volunteers and members in 37 Branches across rural and regional NSW. We own and operate three patient care facilities - Jean Colvin Hospital, which is a fully Accredited hospital and located in Darling Point - Sydney, Ecclesbourne which is a bed and breakfast facility for patients and their carers and Lilier Lodge which also caters for cancer patients and their carers and is co-owned with the Cancer Council - located in Wagga Wagga. These facilities are situated close to treating hospitals."
Their web address is www.cancerpatients.com.au. 

The Australian website Virtual Cancer Centre at www.virtualcancercentre.com has information about cancers and their treatments, and about drugs used to treat cancers. It's a resource primarily designed for health professionals, but if you are a patient or supporter researching a cancer and its treatments you may find useful information here. "Established in April 2002 virtualcancercentre.com has been compiled by Australian medical professionals and industry to be a comprehensive online cancer information, news and education knowledge hub ...". The website is part of a larger enterprise Virtual Medical Centre at  www.virtualmedicalcentre.com.

More suggestions please

If you know of any other good mesothelioma and other asbestos diseases websites large or small, or active forums (message or discussion boards) or mailing lists on mesothelioma and other asbestos diseases 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 4th June 2008

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