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A guide to the world's best and most popular English-language brain cancer websites for information and support
This is a summary of the best websites I could find around the world for brain cancers, both for general information (symptoms, treatment options, research, etc) and for forums (message or discussion boards) and other kinds of support. And for those living in Australia there is information about Australian websites here.
As you will see below, there are quite a few websites that offer information and support relating to brain cancers. A good strategy would be to briefly check them all out so you know the range of info and support available on the net, and then you can explore the sites you like in more depth.
The American Brain Tumor Association has a very good website devoted to the wellbeing of those with brain cancer and their supporters at www.hope.abta.org, and I recommend you visit this site first. Here's what they say about their site.
"Welcome to the American Brain Tumor Association, your complete source for information about brain tumors, treatment options, clinical trials and living with a brain tumor. We also have a broad variety of social work resources and services for you."
"We are an independent, global organization making an impact by funding research and providing the information patients need to make educated decisions about their health care."
"We have earned the distinction within the neuroscience community as being the most complete resource for patient information. Our information specialists can answer your questions about tumors and treatment. Our social workers respond to the practical needs of families living with a brain tumor through consultation and by providing local resource information. And, our regional meetings, held across the country, bring people together to share their experiences and learn with renewed spirit."Among their resources is an annotated links page at http://www.abta.org/index.cfm?contentid=225 (or click on the link "Care & Support" on the home page) that is well worth browsing through for websites that may be relevant to your situation.
The National Brain Tumor Society (USA) has an excellent website at http://www.braintumor.org, with lots of information and active forums too (look for the link to their online community on the home page). They say the "National Brain Tumor Society brings together the best in brain tumor research and supportive patient services. We offer hope to patients, families, and caregivers during every stage of the treatment journey". The Society was formed by merging the National Brain Tumor Foundation and the Brain Tumor Society in July 2008.
The Brain Tumour Foundation of Canada at www.braintumour.ca "is a national, not-for-profit organization dedicated to reaching every person in Canada affected by a brain tumour with support, education and information, and to funding brain tumour research.
Every year, we help thousands of Canadians affected by brain tumours find emotional support and comfort while gaining a better understanding and knowledge of their disease."
There isn't as much information on their site as on the American Brain Tumor Association site, but they do have several forums and a chat room.A valuable source of reliable information on brain cancer is the website of the USA Government's National Cancer Institute at www.cancer.gov . The section devoted to brain cancers gives an easy to read and easy to understand description of what these cancers are, how they are diagnosed, treatment options, descriptions of treatments, and more.
To locate the sections on brain 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 Brain - there are several types of brain tumor to choose from.
The American Cancer Society at www.cancer.org, a voluntary organisation, runs one of the most comprehensive websites on cancer and cancer-related matters on the net. It covers all forms of cancer, there's a wealth of information on cancer and cancer-related matters, and some forums or discussion boards and two chat rooms.
To find their information on brain cancer, at the top of their home page, click on the link "Learn About Cancer", then on the new page that displays, in the alphabetical list under the heading "Select a Cancer Type" find and click on "Brain Cancer" and then click on Go.They run a brain cancer forum - look for a link to "Discussion Boards" on their Cancer Survivors Network index page who's address as at 29nd March 2011 is http://csn.cancer.org.
They have many other resources too for those involved with cancer so it's well worth exploring their site for additional information and support that may be relevant to your situation.
The Acoustic Neuroma Association has a website at www.anausa.org, with plenty of information, and support options including an active forum. To find the forum, try this direct link www.anausa.org/forum/ or look for the link to Support Groups on their home page.
The Musella Foundation For Brain Tumor Research has a website at www.virtualtrials.com. The Foundation is a "non-profit organization dedicated to improving the quality of life and survival times for brain tumor patients. We will attempt to achieve that goal by using computer technology to streamline the flow of information, organize the brain tumor community and raise money for brain tumor research." Included on the site is information about treatments, treatment centers, a long list of support groups (mostly USA), a chat room, a detailed list of links well worth exploring if you're looking for more sites or for mailing lists, and a list of about a hundred clinical trials.
Meningioma brain tumors: Alan Herendich runs three internet sites for those involved with meningioma brain tumors. One is the Yahoo group "Meningioma Support and Information" at http://health.groups.yahoo.com/group/meningioma/ - "This is a place to share our stories, our hopes, our questions, our triumphs, and our frustrations about meningioma brain tumors. Isolation can be as hard to deal with as the tumor itself. This site is here to help ease the effects of isolation, and to help people get on with their life after diagnosis ... ".
Alan also runs a bulletin board format group called "Meningioma Talk" here http://disc.yourwebapps.com/Indices/148753.html and a Facebook group called "MeningiomaTalk" "A group for anyone with a meningioma brain tumor or anyone who knows someone with a meningioma. This is a place for people to connect and share information and support ... " here http://www.facebook.com/#!/home.php?sk=group_125250657521433.
The National Comprehensive Cancer Network (NCCN) is "... a not-for-profit alliance of 21 of the world’s leading cancer centers. We are dedicated to improving the quality and effectiveness of care provided to people with cancer" ... "an authoritative source of information to help patients and health professionals make informed decisions about cancer care. Through the collective expertise of its member institutions, the NCCN develops, updates, and disseminates a complete library of clinical practice guidelines. These guidelines are the standard for clinical policy in oncology" (quoted from their website). If you want to take a role in planning your course of treatment in consultation with your medical health providers then you may find these guidelines valuable.
Their set of clinical guidelines for the treatment of central nervous-system tumors can be found by going to this webpage www.nccn.org/professionals/physician_gls/default.asp.
The Healing Exchange Brain Trust "A community for sharing information and support about brain tumors and related conditions" runs several mailing lists. To find them, go to this link www.braintrust.org/services/support/braintmr/ and browse the page. Here's a description of one of them:
"BRAINTMR was initiated in October 1992 by Samantha J. Scolamiero, a brain tumor survivor. It came on-line May 15, 1993. There are about 1000 active subscriptions from six continents on the list. ... There are on average 50-100 messages per day. Many people generously offer their expertise and experiences to provide information and support. Anyone willing to talk about brain tumors is welcome to expand our discussions..You can find information, links, personal experiences and perspectives on Denis Strangman's website "Brain Tumour Publications and Resources" at www.ozbraintumour.org/journey.htm . "Also incorporating the Marg's Journey website, being the web-diary of an Australian woman diagnosed with a glioblastoma multiforme grade 4 brain tumour, and her family". There's a group of mailing lists (discussion groups) at www.health.groups.yahoo.com/group/OzBrainTumour - the Ozbrain Tumour list had 715 members when I visited on 24th August 2010.
The International Brain Tumour Alliance (IBTA) has a website at www.theibta.org. They say the IBTA "... seeks to be an alliance of the support, advocacy and information groups for brain tumour patients and carers in different countries and also includes researchers, scientists, clinicians and allied health professionals who work in the area of brain tumours." You can also find links on their home page to several brain cancer websites I have not mentioned on this webpage.
The Spinal Cord Tumor Associatation website at http://spinalcordtumor.homestead.com says: "SCTA is a caring community on the web, established by people just like you, who have been given the overwhelming diagnosis of a spinal cord tumor. You, and those close to you undoubtedly have many questions. Adjusting to this diagnosis can be less frightening in the company of others who have gone through the ordeal, and can share their experiences. Please browse, get to know us, join the discussion forum, ask questions, and come back as often as you like." Their forum stats on 15th July 2011 were Total Topics: 1,474 - Total Posts: 11,395 - Total Members: 591.
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 brain cancer is www.nlm.nih.gov/medlineplus/braincancer.html.
Facebook is a good place to find brain cancer websites and support groups - put brain cancer into the Facebook search window and see what you can find, and also try the variations brain tumor and brain tumour, and the particular name of the brain cancer you're involved with.
The Association of Cancer Online Resources (ACOR) hosts many mailing lists on individual cancer types and other cancer-related topics. To search their index of mailing lists go to the ACOR home page at www.acor.org and click on the link 'Mailing Lists'.
Eric Galvez is a 31 year old physical therapist living in San Diego California. He was diagnosed with a brain tumor in 2005, was operated on to remove the tumor, and received rehab from his former work colleagues at the hospital where he used to work. He has written a book about his experiences, and created an uplifting website "They Call Me 'Galvez'" at www.ericgalvezdpt.com. There's plenty to explore on Eric's site including a valuable links page that will lead you to the personal experiences of others facing the challenges of a brain tumor diagnosis.
More to ExploreBrain Tumour Ahoy Hoy at www.braintumourahoyhoy.org and on Facebook at www.facebook.com/home.php?sk=group_170740152944500www.braintumourahoyhoy.org - "A support group for people with low grade brain tumours ... Brain Tumour Ahoy Hoy's mission is to provide information, support and awareness for patients, friends and family who have or have previously had a low grade brain tumour." The support group was created by Samantha Wright and she has also started a blog at www.samantha-braintumourahoyhoy.blogspot.com - "Stories, thoughts, feeling, poems, photos, art, of a person living with a brain tumour" {quoted from the websites}.
Another support group for those with brain tumors on Facebook is Brain Cancer Family at www.facebook.com/groups/111630445593565?ap=1, with 636 members when I visited on 3rd August 2011. They say: "If you are affected by Brain Cancer, Tumors or just want to get educated. This group we share our lives after before and during our diagnosis. Life with treatment, struggles we come across as we try to be "normal" again. Our journey continues to be, a journey of hope, of joy and of commitment. We invite you into our lives to share how you have been effected. Come witness our challenges and discover the triumphs as we share realtionship struggles, family struggles and communication."
Two other related groups on Facebook are "Teenage/Young Adult Brain Cancer or Tumors- BCF" at www.facebook.com/groups/234890653208918?ap=1 and "Brain Cancer Family FUN" at www.facebook.com/groups/160014837405063/. "Tumor humor! We want a place to share the lighter side!! A group dedicated to sharing fun, silly stories, jokes, pics, videos and more! Join us and bring your funny bone ;) ".
"The Pediatric Low Grade Astrocytoma (PLGA) Foundation with a website at www.fightplga.org "is ... non-profit organization dedicated to providing hope to children, parents, and families fighting Pediatric Low Grade Astrocytomas (PLGAs). We were founded in August 2007, as a 501(c)(3) foundation made up of families and friends dedicated to helping children who are struggling with brain tumors" {quoted from their website}. You may find links to further useful resources on their site.
World General Cancer-Related Websites Other websites you may find valuable
The United Kingdom website Macmillan Cancer Support at www.macmillan.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." (I've borrowed that quote from the former United Kingdom website called "Cancerbackup" which has now been incorporated into the Macmillan website - if you're looking for Cancerbackup on the net it's now Macmillan Cancer Support.)
If you join their online community you can run a homepage and a blog, post photos, and participate in forums, chat and groups.
Macmillan Cancer Support is one of the biggest and most comprehensive cancer websites worldwide and it covers most cancer types. I suggest adding it to your list of reliable sources of information about cancers and their treatment, along with the USA's National Cancer Institute website www.cancer.gov and the American Cancer Society's website www.cancer.org.
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.
The Irish Cancer Society has a website at www.cancer.ie which includes a message board (forum).
There are links to lymphedema websites on this page www.bestcancersites.com/lymphedema.
Fatigue is a common side-effect of cancers and their treatments. If you or someone you know is having problems with cancer-related fatigue you may find it worthwhile browsing some of the information and discussion about fatigue due to cancers and their treatments on some of the best cancer websites. Here are four reliable sites where there are articles or discussions on fatigue. The quickest way to find their info is to put the word fatigue into the search windows at the tops of their home pages and see what you can find: http://www.lls.org/hm_lls
http://www.breastcancer.org
http://www.cancer.org
http://www.cancer.govRadiation therapy: the USA's National Cancer Institute has an online book "Radiation Therapy and You: Support for People With Cancer" at www.cancer.gov/cancertopics/coping/radiation-therapy-and-you.
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.
Numerous cancer-related websites and support groups have a presence on Facebook at www.facebook.com.
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 "How Can We Help You [Resource Directories]" for links to a wide variety of resources relevant to young adults with cancer.
And they've recently opened a group of forums (message boards) - there's a link to the forums on their home page or try this direct link http://forums.stupidcancer.com
You can also check out The Stupid Cancer Show, a weekly radio broadcast: "70,000 young adults (15-39) are diagnosed with cancer annually; one every 8 minutes. This is not OK! The Stupid Cancer Show is an award-winning international talk radio webcast giving voice to this lost generation ...". The direct link to it is http://www.blogtalkradio.com/stupidcancershow
I'm Too Young For This! also has a presence on several social newtworking websites including Facebook.
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!
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.
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 PC Re-Orientations and other retreats in the US, networking groups, one-to-one support, and events. To find this info, look for the link to "Connect" at the top of the Planet Cancer home page at http://planetcancer.org.
Planet Cancer has recently launched a social networking section of their website for young adults with cancer, at http://myplanet.planetcancer.org. It's already become popular - not surprising as it's running on state-of-the-art software and it's the best social networking website of it's kind I've yet come across.
Members can join groups or form their own groups, share photos and videos, participate in the forums and chat, and run their own blogs. I counted seven ways to interact on Planet Cancer: - participate in the Planet Cancer discussion forum - join groups and post messages on the group walls and forums - post messages on each others My Page walls - post comments on members' blog entries - exchange private messages with your friends - join in chat sessions with one or more members - post comments on members' photos
About the only means of communication missing is carrier pigeons.
Planet Cancer also has a presence on Facebook at http://www.facebook.com/group.php?gid=33960288752
Young Adult Cancer Canada at www.youngadultcancer.ca (formerly 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, news and articles, and a list of the different support groups in Canada specifically focused on young adults. They also run a public education program. There's plenty on their website that will be of interest to young adults with cancer wherever you 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.ped-onc.org, 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.ped-onc.org/cfissues/teens.html.An initiative of the Lance Armstrong Foundation (website at http://www.livestrong.org) is the LIVESTRONG Young Adult Alliance.
"The LIVESTRONG Young Adult Alliance is a coalition of organizations with the goal to improve the survival rates and quality of life for young adults with cancer between the ages of 15 and 40. The Alliance is committed to promoting research and the investigation of the problem, serving as a voice for the issue and promoting effective solutions."
"We formed the LIVESTRONG Young Adult Alliance with the knowledge that unity is strength - by working together we can raise awareness and effect positive change for young adults with cancer."
Information about the LIVESTRONG Young Adult Alliance starts here http://www.livestrong.org/site/c.khLXK1PxHmF/b.2661399/k.71A4/Young_Adult_Alliance.htm Their resources section starts here http://www.livestrong.org/site/c.khLXK1PxHmF/b.4659829/ and their Community Resources page is here - it's got some good links to check out http://www.livestrong.org/site/c.khLXK1PxHmF/b.4659841/k.246/Community_Resources.htm
The big United Kingdom based website Macmillan Cancer Support at www.macmillan.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 "Teen info on cancer" at the bottom of their home page or try this direct link www.click4tic.org.uk.
More to Explore (in brief)Immerman's Angels www.imermanangels.org "Imerman Angels carefully matches and individually pairs a person touched by cancer (a cancer fighter or survivor) with someone who has fought and survived the same type of cancer (a Mentor Angel). Cancer caregivers (spouses, parents, children and other family and friends of fighters) also receive 1-on-1 connections with other caregivers and survivors. These 1-on-1 relationships inspire hope and offer the chance to ask personal questions and receive support from someone who is uniquely familiar with the experience. The service is absolutely free and helps anyone touched by any type of cancer, at any cancer stage level, at any age, living anywhere in the world." {quote from their website}
The Ulman Cancer Fund for Young Adults www.ulmanfund.org "...we are working at a grassroots level to support, educate, connect and empower young adult cancer survivors. Since inception in 1997, we have been working tirelessly at both the community level and with our national partners to raise awareness of the young adult cancer issue and ensure all young adults and families impacted by cancer have a voice and the resources necessary to thrive." {quote from their website}
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.
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.
When regular treatment ends - now what? It can be a big relief when regular cancer treatment finishes but there can be unexpected challenges and difficulties. Suddenly the whirlwind of diagnosis and meetings and chemo rooms and hospital visits and interactions with numerous people comes to an end. Your sources of support may also dwindle as some people may assume your life will fully return to its pre-diagnosis normalcy. If you'd like to read about post-treatment challenges and ways to minimise difficulties, here are links to two discussions on the topic that you may find are valuable reading www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Lifeaftercancer/ www.cancer.gov/cancertopics/coping/life-after-treatment/.
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."
Here's three links you may find useful if you're thinking of getting a second opinion:
www.cancer.org/Treatment/UnderstandingYourDiagnosis/TalkingaboutCancer/TalkingWithYourDoctor/talking-with-your-doctor-getting-a-second-opinion
www.breastcancer.org/treatment/second_opinion/asking.jsp
www.lls.org/#/diseaseinformation/managingyourcancer/newlydiagnosed/secondopinion/.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/Treatment/TreatmentsandSideEffects/ComplementaryandAlternativeMedicine/index 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.
The National Cancer Institute also has a good information page on how to determine if cancer-related websites you visit are likely to provide reliable information. The direct link to it is Is Information On The Web Reliable?.
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.Support and information for caregivers: On the American Brain Tumor Association website in their "Welcome to the Care for the Caregiver Corner" at www.abta.org/care_support/care_for_the_care_giver/34-2 there's an annotated list of links to many internet resources you may find useful if you are a caregiver of someone with any kind of cancer.
In brief: "What is the American Cancer Society Cancer Action Network (ACS CAN)? ACS CAN is the nation’s leading cancer advocacy organization that is working every day to make cancer issues a national priority. Many of the most important decisions about cancer are made outside of your doctor’s office. Instead, they are made by your state legislature, in Congress and in the White House. ACS CAN empowers regular people to be part of the growing national movement that is fighting back against cancer" ... www.acscan.org
You can find guides to the best websites for other cancer types on my website www.bestcancersites.com.
More suggestions please
If you know of any other good brain cancer websites large or small, or active forums (message or discussion boards) or mailing lists on brain cancer 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 currently being updated July 2011
Australian Brain Cancer Websites
Brain Tumour Alliance Australia (BTAA) at www.btaa.org.au. They say: "Brain Tumour Alliance Australia (BTAA) is the only national brain tumour patient and caregiver organisation in Australia. It was established in late 2008 by a group of brain tumour patients and current and former caregivers. While welcoming the advice and input of specialists, BTAA seeks to represent the brain tumour community from the viewpoint of the patient, family and caregiver."
"BTAA is concerned about all brain tumours - paediatric and adult, malignant and so-called benign, and metastatic brain tumours. In other words, all tumours of the central nervous system, which includes the spinal cord. It believes that brain tumours represent a neglected cancer, which places enormous challenges on the patient and family and requires a unique response and a much increased research effort supported by the community and governments."As mentioned above, you can find valuable information, links, personal experiences and perspectives on Denis Strangman's website "Brain Tumour Publications and Resources" at www.ozbraintumour.org/journey.htm. There's a group of mailing lists too. The home page of the mailing lists is http://health.groups.yahoo.com/group/OzBrainTumour. The OzBrainTumour list had 539 members when I visited on 8th September 2006. "Welcome to OzBrainTumour, providing a community of support for Australians dealing with brain tumour. This group was established in 2000 and now is one of FOUR discussion groups with different focus. You may join any or all of these."
The Brain Foundation has a website called Brain Australia at www.brainaustralia.org.au. "The Brain Foundation was established in 1970 by members of the Australian Association of Neurologists and the Neurosurgical Society of Australasia to reduce the incidence and impact of disorders of the brain, spinal cord and nervous system through the provision of support, community education and research." They also run a website called Headache Australia at www.headacheaustralia.org.au.
The James Crofts Hope Foundation runs a website at www.jamescroftshopefoundation.org.au. "... formed in February 2001, in Perth, Western Australia. It is a licensed and registered charity, dedicated to assist brain tumour sufferers in Australia and to support their carers and family in any way that we can" ... "Our aim is to establish a world-class research facility here in Perth, Western Australia for brain tumours and brain cancers. The Foundation is establishing this online resource centre where patients and families can source information regarding options for treatment."
The Cancer Council New South Wales on their website at www.cancercouncil.com.au has a good information page called 'Understanding Brain Tumours' where you can read about symptoms, diagnosis and treatments - the direct link to it is www.cancercouncil.com.au/editorial.asp?pageid=1226. Some of the other Cancer Council websites in Australia also have brain cancer information sections.
Clinical guidelines for the treatment of brain cancer are currently being developed in Australia - when they are ready a link should be posted on this Cancer Council Australia webpage www.cancer.org.au/HealthProfessionals/ClinicalGuidelines.htm.
As mentioned earlier, a physician-friendly set of clinical guidelines for the treatment of central nervous-system tumors prepared by the The National Comprehensive Cancer Network (USA) can be found by going to this webpage www.nccn.org/professionals/physician_gls/default.asp.
Samantha Wright runs a support group in Melbourne called Grey Matters for people living with a brain tumour. They meet up at 7pm for a 7.30 start till 9pm in Carlton on the 3rd Monday of every month. She says: "All patients, family, caregivers and friends are encouraged to attend. During our informal meeting, everyone is given the opportunity to chat and meet with others in similar circumstances. We like to create a positive environment where people can relax and have fun as well as talk about serious issues". You can read further details here www.facebook.com/groups/170740152944500?view=doc&id=244127432272438 or email Samantha at braintumourahoyhoy at gmail.com.
Samantha has also newly created a support group website called Brain Tumour Ahoy Hoy at www.braintumourahoyhoy.org and on Facebook at www.facebook.com/home.php?sk=group_170740152944500www.braintumourahoyhoy.org - "A support group for people with low grade brain tumours ... Brain Tumour Ahoy Hoy's mission is to provide information, support and awareness for patients, friends and family who have or have previously had a low grade brain tumour." She has also started a blog at www.samantha-braintumourahoyhoy.blogspot.com. She says: "I was diagnosed in 2009 at the age of 30 with a grade 2 oligoastrocytoma. Meaning, it is a low grade mixed glioma brain tumour that consists of a oligodendroglioma which can be a slow growing brain tumour and astrocytoma. Then in January 2010 I had a left frontal craniotomy to remove my tumour".
Australia General php page 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.
Cancer Connections at www.cancerconnections.com.au is an online community created by Cancer Council New South Wales offering support and information to all Australians affected by cancer.
A feature of the site is their forums (discussion boards) where members can share support and exchange information and experiences. As well as general forums for Australians affected by cancer there are forums specifically dedicated to young adults, survivors, and partners, family & friends.
They've recently launched a Young Adults section of the website which includes "news about upcoming events for young adults with cancer and links to our In Focus topics designed specially for young adults, covering issues like sexuality, nutrition, complementary therapies and treatment side effects".
The website's Resources page details some of the services and resources offered by Cancer Council New South Wales including a confidential support and information service helpline you can access by telephone or email.
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".
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 website is at www.cancerinstitute.org.au and their site map page is at www.cancerinstitute.org.au/cancer_inst/sitemap.html.
They say "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 2011–15, news releases, and a variety of other information for patients, researchers and health professionals.
They have also developed a website called eviQ Cancer Treatments Online (formerly known as CI-SCaT) here. "eviQ Cancer Treatments Online is a point of care clinical information resource that provides health professionals with current evidence based, peer maintained, best practice cancer treatment protocols and information. eviQ is relevant to the Australian clinical environment and can be accessed free 24 hours a day. eviQ is designed to support a busy work flow in all clinical and geographical settings, allowing rural, remote and metropolitan health professionals, patients, carers and their families access to the same standard evidence based information at all time."
Cancer Australia "is the Australian Government's national cancer agency. We are working to improve outcomes for people affected by cancer, by ensuring that national cancer control, prevention, treatment and care are evidence-based."
"Our role is to provide national leadership in cancer control, and we are doing this by developing partnerships and productive working relationships with other cancer-related organisations, strengthening consumer participation in cancer control, building cancer research capacity, enhancing the education of cancer health professionals, improving access to cancer services and improving cancer data."
Cancer Australia was established by the Australian Government in 2006. You can explore their website at www.canceraustralia.gov.au to see how far they've come and whether they have information relevant to your situation.
Lymphedema The Australasian Lymphology Association National Lymphoedema Practitioners Register is: "A public register of lymphoedema practitioners in Australia and New Zealand. These practitioners fulfil the accreditation and registration requirements of the ALA" {quoted from their website}. You can find the register at http://www.nlpr.asn.au and use their search facility to look for registered lymphoedema practitioners near you. The register was launched in July 2010.
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."
Cancer Council Western Australia (www.cancerwa.asn.au) is offering free Life Now yoga and meditation classes: "Are you or someone you care about living with cancer? We invite people living with cancer, their carers and family members to take part in this free program".
They also offer a free Life Now exercise program. "The program includes a personalised program and admission to 2 classes per week, and requires a 12 week commitment (health permitting). ... The program is free to cancer patients who have undergone treatment within the last two years and their carers. There may be a once off fee for your initial assessment with our qualified Exercise Physiologist, this is dependent upon your GP and private health care fund".
See their flyer on these programs for more details here, and a relevant page on the Cancer Council Western Australia website is www.cancerwa.asn.au/patients/support-and-services/life-now/ . My thanks to Sarah McLean who is the Life Now Project Officer for the Cancer Council of WA for sending me this information.
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 mplementation 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 commercial enterprise Virtual Medical Centre atm www.virtualmedicalcentre.com.
South Australia in brief (my home state)
Cancer Council SA www.cancersa.org.au
Among their services they run a shop at Shop 11, Regent Arcade, Adelaide SA 5000 (Regent Arcade is a walk-through arcade "running" from Rundle Mall to Grenfell Street).
The Cancer Care Centre Incorporated, 76 Edmund Avenue, Unley, South Australia 5061, website address www.cancercare.asn.au.
Here's a couple of quotes from their website to give you a flavour of their approach and the services they offer."The Cancer Care Centre Incorporated is an innovative, non-profit organisation providing complementary health care support to people affected by cancer - including patients, carers and families. It is the largest complementary health care organisation in South Australia dedicated to cancer. In 2010 an estimated 6,000 individual services will be delivered to people affected by cancer."
"We offer cancer patients, carers and family members a variety of courses, support groups, seminars, counselling, complementary therapies and resources designed to empower the individual to actively involve themselves in the healing process."
Southern Fleurieu Cancer Support & Resources Group Facebook page http://www.facebook.com/SFCSRG
More suggestions please
If you know of any other good brain cancer websites large or small, or active forums (message or discussion boards) or mailing lists on brain cancer 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 currently being updated July 2011
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