The home page address is www.bestcancersites.com
BEST BREAST CANCER WEBSITES
The address of this page is www.bestcancersites.com/breast
A guide to the world’s best and most popular breast cancer websitesThis is a summary of the best breast cancer websites I could find around the world both for general information about breast cancer (symptoms, treatment options, research and much else) and for forums (message or discussion boards) and other kinds of support. I have given links to the home pages of each site, and also direct links to the forums or message boards. And for those living in Australia there is information about Australian websites here.
for information and support.
For those whose lives have been touched by breast cancer, and for their partners, friends, relatives, caregivers and health providers.
Most links open in a new window, so to return to this page after you've checked out another website, simply minimise or close the new window.Unquestionably one of the best three sites specifically devoted to breast cancer is “Breastcancer.org - a non-profit organisation for breast cancer education”. This is a comprehensive website covering a wide range of breast cancer matters including symptoms and diagnosis, treatment, research news, trials, recovery and renewal. There are many articles on different aspects of breast cancer and they are well written and easy to understand.
The link to their home page is www.breastcancer.org/.
They also have plenty of active forums or discussion boards and also chat rooms, covering many aspects of breast cancer and related issues. The direct link to the forums is www.breastcancer.org/ubbthreads/ubbthreads.php
Another excellent and comprehensive site I recommend is Breast Cancer Care. “Breast Cancer Care is the UK's leading provider of information, practical assistance and emotional support for anyone affected by breast cancer. Every year we receive almost two million requests for support and information through our services including our helpline, website and publications. All of our services are free.” Their address is www.breastcancercare.org.uk/Home
They are currently running about eighteen forums on various aspects of breast cancer and there is a chat room too. The direct link to their forums is
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.
www.breastcancercare.org.uk/content.php?page_id=69
To find their information on breast cancer, go to their home page, click on the link "Choose a cancer topic" and find and click on Breast Cancer in the alphabetical list that displays and then click on Go.
They are currently making changes to the structure of their forums and they are running two breast cancer forums - the original one at www.acscsn.org/Forum/Discussion/?msgrid=2 which many people are still using, and a new one. The direct link to their new forums index page is forums index.
A very good source of information on breast cancer and its treatment is the website of the U.S. Government's National Cancer Institute at www.cancer.gov/. If you want to learn more about the breast and breast cancer, I recommend going to this website, finding the section devoted to breast cancer, and reading it through. It gives an easy to read and easy to understand description of the breast, what breast cancer is, how it is diagnosed, treatment options, descriptions of treatments, and more.
To locate the section on breast cancer, click on this link www.nci.nih.gov/cancertopics/types/breast. Alternatively, go to their home page, find the heading “Types of Cancer” and click on the link “Breast Cancer”.
If you want to delve deeper into any aspect of breast 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 breast cancer is www.nlm.nih.gov/medlineplus/breastcancer.html. You can also find sections on Breast Diseases, Breast Reconstruction, Male Breast Cancer, Mammography, Mastectomy, and Women's Health.
The National Comprehensive Cancer Network (NCCN) is “an alliance of 19 of the world's leading cancer centers, ... 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.
The NCCN has teamed up with the American Cancer Society to produce patient-friendly versions in English and Spanish for several of the most common types of cancer including breast cancer. The web address of the NCCN is www.nccn.org/ and the direct link to the patient-friendly guidelines for breast cancer is
www.nccn.org/patients/patient_gls/_english/_breast/contents.asp.
To find the physician-friendly set of guidelines go here www.nccn.org/professionals/physician_gls/default.asp.The website of the organisation Young Survival Coalition at www.youngsurvival.org/ is specifically designed for younger people (under age 41) "the only international, non-profit network of breast cancer survivors and supporters dedicated to the concerns and issues that are unique to young women and breast cancer.”
If you are a younger person this is a valuable site to check out, but if you go first to this site, please do explore the other sites I have listed on this page as well - they cater for all ages and you will find plenty of information and sources of support you may not find on the Young Survival Coalition site.
For many younger women the most valuable feature of the Young Survival site will be their forums. There are about ten individual forums including ‘Fertility & pregnancy after breast cancer’, and there are also scheduled chat sessions. To find the forum index page, click on the link YSC Community on the home page, and then find and click on the link Bulletin Board on the new page that displays.
Here are links to descriptions on two reliable websites of how to do a breast self-exam. On the Breastcancer.org website (www.breastcancer.org) go to this page www.breastcancer.org/dia_detec_exam_idx.html and on the American Cancer Society website (www.cancer.org) go to this page. I would suggest following these guidelines rather than ones you might find on a health or lifestyle website, magazine, pamphlet etc in case they're out of date.
There is a good video on the Susan G. Komen for the Cure website describing in some detail how to perform a breast self-examination. To find it, go to their home page at www.komen.org and look for the link "Breast self-exam" (or similar wording) and follow the links. Two other videos I suggest viewing are on the InteliHealth website on this page www.intelihealth.com/IH/ihtIH/WSIHW000/8096/32859.html and on the HealthiNation website on this page
www.healthination.com/breast_self_exam.php?bcpid=18378133.
The UK based organisation Breast Cancer Care has a section called "Benign breast conditions" on this page www.breastcancercare.org.uk/content.php?page_id=148 of their website www.breastcancercare.org.uk. They list thirteen benign conditions of the breast eg fibroadenoma, breast cysts, breast calcifications, and for each one they give information about what it is, how it is found, treatment and follow-up, and what it means for the person who has it. There is a similar but more complex article called "Non-Cancerous Breast Conditions" on this page www.cancer.org/docroot/CRI/content/CRI_2_6X_Non_Cancerous_Breast_Conditions_59.asp of the American Cancer Society website www.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. And I especially recommend visiting that webpage straight away if you're newly diagnosed and concerned about how treatment may affect your fertility.
Susan G. Komen for the Cure is a very energentic breast cancer patient advocate and fundraising organisation, probably best known for its Komen Race for the Cure events - "... the largest series of 5K runs/fitness walks in the world. 2004 is the 21st anniversary of the Race and more than 1.4 million people are expected to participate in more than 100 Races around the United States". You can find their website at http://www.komen.org/.
"This year, we celebrate nearly 25 years of patient advocacy, building awareness and investing $630 million in breast cancer research, education, screening and treatment programs" and "The Komen Foundation has more than 75,000 volunteers working through a network of more than 100 U.S. and international Affiliates ..." (quoted from their website).
They have a set of ten forums (message boards) on various aspects of breast cancer including "Sound Off Express your thoughts or feelings here on any subject related to breast cancer" which had a total of 5378 threads and 42015 posts when I visited on 9th June 2006.
Breast Cancer Action Nova Scotia (BCANS) has a website with a range of information and links and support relating to breast cancer in Novia Scotia and Canada, and an active forum. The address is www.bcans.org/index.htm.
The Johns Hopkins Hospital Breast Center at www.hopkinsmedicine.org/breastcenter has an “Ask the Expert” section, where you can submit questions about breast cancer, and it currently has several thousand answered questions. The direct link to it is Ask the Experts. They describe it thus: “Welcome to the Johns Hopkins Breast Center's "Ask the Experts" section of our website. Here you can send a question to us for review and consider for posting on the website in this section. ... This "Ask an Experts" section is divided into categories intended to make it easier to navigate.”
An excellent website for those concerned about hereditary breast and ovarian cancers is called 'Force: Facing Our Risk of Cancer Empowered'. The address is www.facingourrisk.org/. They have considerable information on hereditary breast and ovarian cancers and genetic testing and related matters, and they give links to many other websites of relevance to these issues. They have a good introduction on their 'Welcome' page (find the link to it on the home page) and there you can find links to their in-depth information. They also have a very active forum where you can post questions and discuss the topic with others.
If you're concerned about hereditary breast cancer it's really important to read up on the topic. The genetics of hereditary breast cancers are usually relatively simple (how the breast cancer genes move from generation to generation in families) but some other aspects of the topic are more complex.
Three websites where you can find very good articles and discussion about hereditary breast cancer and genetic testing are Breastcancer.org at www.breastcancer.org, the FORCE website www.facingourrisk.org, and the National Cancer Institute (USA) website www.cancer.gov. Here's how to find the info on each site.On the Breastcancer.org website, go to their home page at www.breastcancer.org and click on the link 'Genetics and Breast Cancer Risk' (it's under the heading 'Lower Your Risk'), and then look at the links on the left side of the new page to see the range of topics covered.
On the FORCE website, go to this page www.facingourrisk.org/homepage/welcome.html where you will find links to a variety of good information.
On the National Cancer Institute website, go to the Breast Cancer: Prevention, Genetics, Causes page at www.cancer.gov/cancertopics/prevention-genetics-causes/breast and the Cancer Genetics gateway page at www.cancer.gov/cancertopics/prevention-genetics-causes/genetics and scroll down the pages to find links to their articles.There's some more information about genetic testing at the bottom of this page here.
“Breast Cancer Support” at www.bcsupport.org/ is another excellent volunteer-run online support group for those involved with breast cancer. They run about twelve forums and a chat room. Their forum “Meeting Place for Survivors” receives numerous posts a day and is one of the most active breast cancer forums on the net. There is a younger survivors board and a section for children. And “The chat room is very active each night beginning around 8:30 Eastern Standard time till? Normally, there are 8-15 survivors in the chat room around 9:00-9:30 pm” (USA times).
If you or someone you know has advanced breast cancer, here's a new website still under construction to check out - AdvancedBC.org at www.advancedbc.org/. The website is the creation of breast cancer survivor and tireless patient advocate Musa Mayer. "Musa Mayer has been a patient advocate ever since her own diagnosis with Stage II breast cancer in 1989. Her special focus is on helping those who are living with advanced breast cancer to make good treatment decisions based on the latest clinical research. Her books, articles and presentations have helped thousands of patients and their families. She works with the FDA, the National Breast Cancer Coalition, the Institute of Medicine, and many other organizations" (quoted from the website).
New entry 6th January 2008: BrainMetsBC.org at www.brainmetsbc.org is a new website created to provide information and support relating to breast cancer patients with brain metastases.
The “Her2 Support Group" has a website at www.her2support.org
They say "This website offers women with metastatic breast cancer and their families a place to learn about brain metastases from a patient perspective. We are a source for the latest information about this form of the disease, as well as for personal stories from women who’ve been there about what it’s like to be diagnosed and treated for “brain mets.”" "Created by patient advocates Musa Mayer and Helen Schiff, BRAINMETSBC.ORG is part of a five-year, multi-disciplinary Center of Excellence research grant funded by the Department of Defense Breast Cancer Research Program [USA]".
If you are seeking information or support relating to brain metastases from breast cancer I recommend exploring BrainMetsBC.org - it's calm, well-written and informative.
where you will find information and support and an active forum.
The Triple Negative Breast Cancer Foundation has recently launched a website at www.tnbcfoundation.org. They say "Our mission is to raise awareness of triple negative breast cancer and to support scientists and researchers in their effort to determine the definitive causes of triple negative breast cancer, so that effective detection, diagnosis, prevention and treatment can be pursued and achieved." They opened a forum (message board) in mid-June 2007 and it's already as I write this two weeks later become quite active (look for the link to TNBC Talk on their home page). There appears to be very little information about triple negative breast cancer on the internet at present so this website is doubly welcome.
Breastcancer.org refers to triple negative breast cancers as "cancers that test negative for estrogen receptors, progesterone receptors, and the HER2 protein" and "Breast cancers that are negative for the two types of hormone receptors and are also negative for the HER2 protein are called "triple negative" breast cancers".
You can find inflammatory breast cancer information and support on the website IBC Support at www.ibcsupport.org/. Another site worth checking out is the Inflammatory Breast Cancer Research Foundation website at www.ibcresearch.org/. There's a list of possible symptoms of inflammatory breast cancer on the home page of the ibcsupport.org website and a longer list on the home page of the ibcresearch.org website.
Paget's Disease of the nipple or breast - there's a section on this uncommon form of cancer on the (US) National Cancer Institute's website, called 'Paget’s Disease of the Nipple: Questions and Answers', on this page www.cancer.gov/cancertopics/factsheet/Sites-Types/pagets-breast
There are five MSN breast cancer support groups that run one or more forums plus or minus a chat room, of which by far the largest is “Friends In Touch Care Team (1951 members) Breast cancer support group specializing in friendship and caring. We offer daily chats, active message boards and answers to your questions from our members.” The direct link to it is
They say "Paget’s disease of the nipple, also called Paget’s disease of the breast, is an uncommon type of cancer that forms in or around the nipple ...".
There's another source of information on CancerBACUP’s website at www.cancerbacup.org.uk/Cancertype/Breast/Typesofbreastcancer/Pagetsdisease#7239.
In Australia there's a very active breast cancer forum run by Janine called the Aussie Breast Cancer Forum at www.bcaus.org.au/forum/
There is a breast cancer forum in the French language and some information about breast cancer on the website of de l'association Le Cancer du Sein, Parlons-en! (Breast Cancer, Let's talk about it!) at www.cancerdusein.org.
Medhelp at Medhelp.org runs a general breast cancer support forum and an "ask a doctor" breast cancer forum where you may get a personal reply from a doctor to a question. You can find a link to the forums on their home page.
Here's a different kind of breast cancer website - it stirs the spirit whether or not you're in a position to go adventuring - Amazon Heart at www.amazonheart.com/. "Take up the challenge of an Amazon Heart Adventure and develop lifelong friendships with other breast cancer survivors from across the globe".
New entry 10th July 2008: LivingConversations at www.livingconversations.com was created by Karen Webster who was diagnosed with breast cancer in 2001 at the age of 44, and whose mother was diagnosed with breast cancer about two years later. Says Karen "This site was inspired by my own experiences and a passion to do my part in sharing the gift of survival with all of the women who will be touched by this disease".
"LivingConversations is a celebration of breast cancer survival. Through the stories of women who are now on the other side of their breast cancer diagnosis and treatment, the site offers hope, inspiration and courage for the many women, family members and network of supporters, affected by this disease". At the heart of the site 45 women who have journeyed through breast cancer diagnosis and treatment tell their stories on videos of a few minutes duration. There's an invitation to join the site, add your own video if you wish, and participate in a forum.
There is a lot of valuable information and discussion about breast cancer and treatments in the 'Benign Breast Disease and Breast Cancer Tutorial', written by William H. Wolberg M.D., Emeritus Professor of Surgery and Human Oncology, University of Wisconsin Medical School. It's a good site to visit if you're doing in-depth exploration of breast cancer and treatments, but it's not all written in layperson's language, and - please note - it includes breast cancer statistics, frank discussion, and pictures of breast cancer. Its address is www.wisc.edu/wolberg/breast.html.
“Friends in Need” is an excellent website created by Susan Pangallo to provide support for those involved with breast cancer. Susan is a breast cancer survivor herself, and her website has several hundred members from around the world, and includes a bulletin board (forum), chat rooms and listserv. The address is www.friendsinneed.com/.
Males have a small amount of breast tissue and so can get breast cancer, although it's rare - less than one percent of all breast cancer cases occur in men. Much more commonly males will have a loved one, partner, relative, friend or colleague diagnosed with breast cancer. And males are as likely as females to carry a hereditary breast cancer gene, and equally as likely to pass it on to their children.
There's a small but growing breast cancer community on the new website Daily Strength at www.dailystrength.org where you can post and read messages and run a journal and upload pictures and videos. Click on the link "Communities" on their home page to find the breast cancer community, and you may find other communities of interest there too eg there's one on lymphedema.
There is a very good discussion of male breast cancer on the Breastcancer.org website www.breastcancer.org beginning on this page www.breastcancer.org/male_bc_intro.html and they also have a forum specifically for men. There's also a hereditary breast cancer forum for men on the FORCE website www.facingourrisk.org.
You can find another article on male breast cancer on the National (USA) Cancer Institute's website www.cancer.gov starting on this page www.cancer.gov/cancertopics/pdq/treatment/malebreast/.
I recommend making the Breastcancer.org article and the National Cancer Institute article your first and second ports of call as they give an excellent cover of male breast cancer. Then explore the same websites I've listed on this page as you would if you were a female, as most of the information about breast cancer on the net is applicable to males as well as to females. If you are concerned about hereditary forms of breast cancer I suggest going here to find links to relevant information on the internet.
Many women with a breast cancer problem also have concerns and questions about hysterectomy. Hystersisters.com at www.hystersisters.com/ has several forums on hysterectomy including one called ‘Cancer Concerns’. “Hyster Sisters is a women helping women website for hysterectomy support”. When I checked on 19th February 2005 they had 61,424 members, and a total of 176,957 threads and 1,172,544 posts!
groups.msn.com/FriendsInTouchCareTeam/messageboards1.msnw
You can find these MSN groups by going to this page groups.msn.com/browse.msnw?catid=101. You may see this sentence "Currently browsing English groups created on any NineMSN site worldwide" near the top of the page. If instead of NineMSN you see the name of your country, try clicking on the word English and select "All sites worldwide" from the Browsing Options. There are other general support groups too on the list for those with an involvement with any kind of cancer.I haven't checked out Yahoo and AOL and any similar networks yet but perhaps they also have online breast cancer support groups.
WebMD Corporation has four forums on breast cancer topics on their website - go to http://boards.webmd.com/roundtable.asp for the index of forums. It's a commercial enterprise and the site carries advertising.Mailing lists provide another way of getting in touch with others involved with breast cancer and for sharing information and support. The Association of Cancer Online Resources (ACOR) runs several mailing lists on breast cancer - you can find the lists by going to the home page of the ACOR website at www.acor.org/ and clicking on the link 'Mailing Lists Center' near the top of the page. The lists include the following (as at 9th June 2006):
BC-SUPPORTERS Support List for Partners of Breast Cancer Patients (116 subscribers)
BRCA Breast Cancer Electronic Support Group (291 subscribers)
BREAST-ONC Current Advances in Breast Cancer Treatments (774 subscribers)
CLUB-METS-BC Metastatic Breast Cancer Online Support Group (263 subscribers)
IBC Inflammatory Breast Cancer Support Group (154 subscribers)
LYMPHEDEMA Online Support Group (370 subscribers)
MALEBC MaleBC - A Male Breast Cancer Discussion List (29 subscribers).
Another good mailing list is called The Breast Cancer Mailing List.
"Since the spring of 1994, the Breast Cancer List has been available on the Internet for women and men who have breast cancer, their families and friends, medical and other caregivers, researchers, students and other concerned people." They have a website at www.bclist.org/ where you can read all about the list, join if you wish, and access the list archives. There were about 500 subscribers when I checked on 9th June 2006.A mailing list for those involved with metastatic breast cancer is 'BCMets.org - Metastatic Breast Cancer Information and Support' at www.bcmets.org/. Between one and two thousand messages are being exchanged each month, and they have a well-set out archive of messages you can search.
IBC Support (inflammatory breast cancer help and support) runs a mailing list: "The IBC support mailing list is for anyone who has questions about inflammatory breast cancer, or who needs help getting through their journey. The list has been running since 1996. It has over 600 members from all over the world, and generates between 20 and 50 messages per day." You can find it by going to their home page at www.ibcsupport.org/ and clicking on the link 'Mailing List'.
World General Cancer-Related Websites Other websites you may find valuableCancerbackup 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.
More suggestions please
If you know of any other good breast cancer websites large or small 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
Australian Breast Cancer Websites
I should emphasise that for many purposes, if you are seeking information and support it does not matter where a breast cancer website is based around the world. So please don’t restrict your explorations to Australian-based websites - do check out the best sites around the world I have listed above, and use the Australian sites for information and support relevant to Australia.
Breast Cancer Network Australia (BCNA) at www.bcna.org.au/ says "We are the peak national organisation for Australians personally affected by breast cancer. We work to ensure that Australians diagnosed with breast cancer and their families receive the very best information, treatment, care and support possible, no matter who they are or where they live." "Breast Cancer Network Australia's role is to empower, inform, represent and link together Australians personally affected by breast cancer. It is driven by women who have themselves experienced breast cancer and represents more than 17,000 breast cancer survivors nationally".
There's a variety of information on their website and it's well worth exploring the site for information and support that may be relevant to your situation.
They have excellent lists of breast cancer support groups in Australia (including contact details), for each state and territory. You can find the lists by going to their home page and placing your mouse pointer over the words 'State by state' near the top of the page and then clicking on a state in the drop-down list that displays.
Among other activities they run "Field of Women" events. "Stand with us at Telstra Stadium in Sydney, on the 11th August [2007] in a night you will never forget. You don't have to be a breast cancer survivor to join us". They also publish a quarterly magazine called The Beacon - "a free national magazine for women with breast cancer - written by them, for them, their families and friends", and available online.
Another very good breast cancer websites in Australia is the New South Wales Breast Cancer Institute's BreastNet at www.bci.org.au/. Once you’ve browsed their home page, I suggest clicking on the ‘Site Map’ link at the top of the home page to find links to the full list of resources on their website.
BreastNet runs five mailing lists and you can find links to these on their home page. If you become a member of their B-Mail list you will receive on average from one to a few new messages each day. This is how they describe B-Mail:
"It is an electronic community of people interested in breast cancer. B-Mail members can send messages, questions or comments to all other members automatically. Or, members may simply read comments and discussions from other members, and E-mail individuals to discuss areas of shared interest or to share information. ... B-Mail is for anyone. Clinicians, allied health professionals, breast cancer patients, survivors, families and friends, and those interested in breast cancer."
Their other four lists are Young B-Mail - "an Email support group for young women affected by breast cancer"; M-Mail - “a mailing list for patients whose breast cancer has come back”, BCN-Mail - "a mailing list for breast care nurses", and Mates-Mail - “a mailing list providing support for men whose partners have breast cancer”.New forum - Janine and a group of dedicated women with breast cancer have created and launched an Australian forum for Aussies with breast cancer to share information and support. Its address is www.bcaus.org.au/forum/. It needs plenty of enthusiastic contributors, so if you live in or around Australia and you are involved with breast cancer, please do consider registering and posting, and helping to develop this much-needed Australian breast cancer resource.
You may find valuable information on the primary website of the Federal Government's National Breast Cancer Centre at www.nbcc.org.au/. There is a section on the site called Clinical Best Practice which they claim is "Australia's leading breast cancer resource for health professionals", and they also have a consumer-oriented website called BreastHealth at www.breasthealth.com.au/.
BreastHealth was originally created by breast cancer survivor Margaret Wright and her surgeon Dr Paul Crea, and in 2003 it was integrated into the National Breast Cancer Centre website as the consumer website of the NBCC. It's similar in scope to the Breastnet website and well worth checking out.
The Federal Government runs a free breast screening program, and you can read about it on the Breastscreen Australia website. "BreastScreen Australia is targeted specifically at well women without symptoms aged 50-69, although women aged 40-49 and 70 years and older are able to attend for screening. At present, BreastScreen Australia operates in over 500 locations nationwide, via fixed, relocatable and mobile screening units."
Each state and territory also has a website devoted to this program. I suggest you go to BreastScreen NSW at www.bsnsw.org.au/ which has plenty of information, and where you can find links to the other state and territory sites.
The Cancer Institute NSW website at www.cancerinstitute.org.au/ has a list of cancer support groups throughout New South Wales and the services they offer here
www.cancerinstitute.org.au/cancer_inst/patients/pdfs/CI_Support_Directory.pdf (it's a 4.9 mb pdf file and takes a while to load on dialup).BreaCan - Breast Cancer Support - is a service of Women's Health Victoria. It provides on-the-ground support for women with breast cancer in Victoria, including a resource centre in Melbourne, a "What's On" series of information sessions, a "Here and Now' program for women with advanced cancer, a group of volunteers with personal experience of breast cancer, and other services. You can read about their support services and programs, and find the address, contact details and opening times for their resource centre, by going to this page www.whv.org.au/breacan/index.htm of the Women's Health Victoria website (www.whv.org.au/).
The Young Ones is a social support group for Victorian women under 45 who have experienced breast cancer. They meet for dinner and a chat once a month and the group now has more than two hundred members. There are details of their monthly meetings and other activities, and how to join, on their website at www.theyoungones.asn.au. The "Articles of Interest" page including a section called "Resources for young women - collated by BreaCan" is well worth browsing for items that may be relevant to your situation. You can read experiences of several members on the Shared Stories & Ideas page. And if you're into leather, polished chrome and the roar of the big bikes, check out the photo of Christine with a Young Ones bear mascot on the Pink Ribbon Ride 2006 here www.theyoungones.asn.au/photo_gallery?wid=99&func=viewSubmission&sid=33.
The Breast Cancer Foundation of Western Australia "was founded in June 2000 by Ros Worthington OAM, with the aim of improving the quality of life for women living with breast cancer. Since its inception the Foundation has provided practical, financial and emotional support to hundreds of Western Australian women and their families who are faced with the challenges of life following a diagnosis and treatment of breast cancer." Their website address is www.breastcancer.org.au/.
Among their activities they run several support groups, a healing room "aiming to provide complimentary therapy to survivors of breast cancer and ladies currently undergoing breast cancer treatment", they employ a breast care nurse, and host an annual indigenous breast cancer forum: "This year will see the forums being held at rural towns throughout Western Australia with the purpose to create a friendly environment for indigenous breast cancer survivors to share their stories amongst each other."A team of Monash University researchers and students together with women from the Breast Cancer Action Group (Victoria) has developed a portal website called Breast Cancer Knowledge Online (BCKOnline) at www.bckonline.monash.edu.au/ where you can tailor a search of breast cancer information and resources to suit your particular needs. Search results come in the form of lists of links to reviewed resources, each with a description of the resource and a quality report. The website is designed to make it easy for you to search and their annotated list of resources is quite extensive.
I mentioned earlier the website Amazon Heart at www.amazonheart.com/. "Take up the challenge of an Amazon Heart Adventure and develop lifelong friendships with other breast cancer survivors from across the globe". One of the co-founders is Australian Meredith Campbell.
"Young Women's Network" at www.qldcancer.com.au/YWN/ is a website for younger women with breast cancer in Queensland.
YWCA Encore at www.ywcaencore.org.au/ "is an exercise program designed specifically for women who have experienced mastectomy, lumpectomy or breast reconstruction surgery at any time in their lives. Based around floor and pool exercises and relaxation techniques, it is safe, fun and therapeutic."
Bosom Buddies at www.bosombuddies.com.au/ are "... a group of spirited women in Canberra and the local ACT Region who have experienced breast cancer personally, or through loved ones. We support each other and help individuals who are newly diagnosed through active support and by providing personal role models for the cancer journey." ... "Founded in 1995, Bosom Buddies is also actively involved in making a difference within the ACT and surrounding region through advocacy and education." ... "We visit patients, provide individual buddies for those who want our support and encourage participation in our social events."
Dragons Abreast Australia "are a group of breast cancer survivors of various ages from a great variety of backgrounds, athletic abilities and interests. High on our list of priorities is having fun, trying new things, meeting interesting people and being involved in a challenging, physical activity whilst promoting breast cancer awareness. ... Dragons Abreast provides a "face" for the breast cancer statistics whilst spreading the message of breast cancer awareness through participation in the wonderful and strenuous sport of dragon boat racing."
"We invite all breast cancer survivors and supporters to come and experience the magic that is part of our unique team - not necessarily as a paddler, there are many tasks that we welcome assistance with!"
On their website at www.dragonsabreast.com.au/ you can find plenty of information and pictures of dragon boat racing and the people involved, and contact details for the Dragons Abreast group in your state or territory - there are now several dragon boat teams of breast cancer survivors and supporters around Australia.
They are staging a major dragon boat regatta in September 2007 and you can read about it here www.dragonsabreast.com.au/Australia_2007/index.htm "Dragons Abreast Australia invites you to our celebration of life in September 2007. The event is called ABREAST IN AUSTRALIA 2007. We anticipate approximately 2000 breast cancer survivors from around the world to celebrate with us in sunny Queensland, giving a HUGE presence and face for breast cancer. The event will be held over three full days from 28 - 30 September and not only will there be dragon boat paddling but there are a host of other activities available for all participants."
The Women's Psychotherapy Service is a network of women therapists working in private practice in Brisbane and they are currently running two support groups for women with advanced breast cancer and for their partners and families. You can find out about the support groups on their website www.advancedbreastcancergroup.org/ , and about the Women's Psychotherapy Service on this webpage.
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.
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.
Hereditary breast cancer and genetic testing in Australia
I've discussed hereditary breast cancer and genetic testing here so I won't repeat that information, but here's some important information relevant to Australia. If you live in Australia and you would like to be genetically tested or at least discuss with a genetic counsellor whether it's appropriate to be tested, a first step would be to discuss this with your doctor or another member of your medical team, and get a referral to a family cancer clinic or a genetic counsellor. You can be referred to a public health system facility or counsellor in which case you may not have to pay much (please ask about the cost beforehand), or you can choose to have the testing done privately, which may be quicker but may cost you up to a few thousand dollars.
If you go to this webpage of the (Australian) National Breast Cancer Centre website www.nbcc.org.au/bestpractice/riskfactors/genetics.html you will find a list of Australian "Family cancer clinics" which are descibed as:
"Family cancer clinics provide a service for people with a family history of cancer and their health professionals. After collecting and thoroughly assessing detailed information about a woman's family history of cancer these clinics provide:
Information about a person's risk of developing cancer
An estimate of the likelihood of carrying an inherited mutation in a cancer predisposing gene.
Counselling and support.
Advice about possible strategies that might help reduce the risk of cancer
Information about early detection of cancer
If appropriate, the offer of genetic testing."If you are in hospital for breast cancer treatment you may be able to discuss genetic testing with a genetic counsellor while you are there.
Other members of your family who may wish to be tested can have the testing done at their nearest centre - you don't all need to go to one particular centre.
If you would like to exchange questions, information and support on the internet with others involved with hereditary breast cancer and genetic testing, I suggest using the forums on the FORCE website at www.facingourrisk.org/, and in Australia the Aussie Breast Cancer Forum at www.bcaus.org.au/forum/ or the mailing list B-Mail run by the New South Wales Breast Cancer Institute's BreastNet at www.bci.org.au/
More suggestions please
If you know of any other good breast cancer websites large or small 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
Section on Australia last modified 28th March 2007
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Hereditary breast cancer and genetic testing
It's estimated that around ten to fifteen percent of breast cancer cases are due to altered genes which are inherited. Very approximately half these cases of inherited breast cancer are due to alterations in one or other of two genes called the BRCA1 or BRCA2 genes. These genes are inherited from either your mother or your father and if you've inherited one of the altered genes then there's a greater chance you'll get breast cancer. There's also a greater chance of ovarian cancer so you do need to keep that in mind, as it will help you determine whether any history of cancer in your family could be due to an inherited gene.
If you have one of these altered genes it doesn't necessarily mean you will get breast cancer but it's more likely. As yet there's no known way to treat the genes themselves in your body so they can't cause any cancer. However tests can be done to determine whether you and other family members have one of the altered genes, and you can use this information to decide whether actions to reduce the risks of getting breast cancer are warranted, and if you already have breast cancer then you can use the information to decide whether to modify your treatment.
The current mainstream medical opinion is that it's not worthwhile being genetically tested unless there are specific indications that you are at above-average risk of carrying one of the altered genes.
The testing procedure itself is quite straightforward - a sample of your blood is taken and tested and you wait a few weeks or months for the results. Deciding whether it's worth-while being tested, and what to do about the information in the unlikely event you test positive for one of the altered genes, can be a more complex process including reviews of your situation with a genetic councellor and your doctor.
Depending on where you are in the world you may or may not need a referral to a genetic councellor (in the USA you can make an appointment to see a councellor without a referral from a physician). The counsellor will help you come to a decision about whether to be tested after reviewing various factors including any history of cancer in your family. And after testing you may have further discussions to determine a best course of action if you do happen to test positive.
In your particular country there may or may not be taxpayer-funded genetic counselling and testing facilities costing you little or nothing (eg in the USA there is no generally-available taxpayer funded testing service but in Australia there is), and there may also be the option of private testing facilities which can be considerably quicker, but cost you a few hundred up to a few thousand US dollars. In the USA you may be able to find a research facility such as a university that will do the testing for nothing but the results may take a lot longer to obtain.
While over half the cases of inherited breast cancer are caused by BRCA1 or BRCA2 altered genes or a few other rarer known altered genes, there appear to be some altered cancer-causing genes that have not been identified by scientists yet. Some families show clear evidence of an inherited form of breast cancer (and sometimes other forms of cancer) but no genetic causes have been found. So members of families with a history of breast and sometimes ovarian cancer where no known cancer-causing genes are found by testing, still need to be vigilant and watchful. Their family history of cancer could be due to the chance occurrence in the family of two or more cancer cases not caused by inherited genes, or it could be due to an altered gene so far unknown to science.
If you're thinking about being genetically tested then please do read some of the articles on the FORCE website, and the Breastcancer.org and the National Cancer Institute articles I mentioned above - they are very good and they will aquaint you with the practical aspects of getting tested and the various issues you may need to consider.
