Ed Everest's guide to many of the best English-language cancer websites for information and support.

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 best and most popular English-language breast cancer websites for information and support I could find.

Please note that I have stopped adding new entries to this page as of 2011 due to my ageing eyes and the need to do some other things in life while time permits. Based on past experience, most of the web sites I've listed here will continue to be good sources of info and/or support for many years to come, as the creators and/or owners will continue to improve them. I'll still be checking the links periodically and also deleting entries to sites no longer on the net.

This 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 New Zealanders there is information about New Zealand websites here. Most links in this guide open in a new window.

One of the best sites specifically devoted to breast cancer, and the site I suggest exploring first, is Breastcancer.org - a non-profit organisation for breast cancer education and support. 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 covering many aspects of breast cancer and related issues, and also chat rooms. When I checked on 10th April 2011 I red "There are currently 94,297 members in 66 forums discussing 71,576 topics." The direct link to the forums is http://community.breastcancer.org.

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.

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 www.breastcancercare.org.uk/forum. When I checked on 29th March 2011 there were over 17,000 members in their community.

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 breast 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 "Breast Cancer" and then click on Go.

They run a breast 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.

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.cancer.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 "... 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.

To find their clinical guidelines for physicians, for the treatment and care of patients with breast cancer, go here www.nccn.org/professionals/physician_gls/default.asp. They have also prepared an easy to understand version of the guidelines for patients, which you can find by going here www.nccn.com/patient-guidelines.html.

There's a long list of annotated links to breast cancer websites and organisations, on Nancy Novack's "Nancy's List" website at www.nancyslist.org, and there are lists of links to other categories too including financial assistance, nutrititon, teens and young adult sites, and a lot more.

Nancy is a stage 4 ovarian cancer survivor and a clinical psychologist. She says "As a survivor and clinical psychologist, I have had the honor to be invited into the lives of over 500 cancer patients at all stages of their disease. I work with men, women, children, teens, and young adults, from newly diagnosed to those lucky ones in remission, with all kinds of cancer. I also work with their partners, children, loved ones, and caregivers on the journey."

SHARE Cancer Support is based in New York City and offers a variety of free support services to women who are survivors or victims of breast cancer or ovarian cancer. They say: "SHARE supports, educates, and empowers people affected by breast or ovarian cancer. All of our services are provided by survivors who've been there. ... We help people face their feelings and fears, communicate effectively with their doctors, and make informed decisions about their health. ...SHARE's services include telephone support, educational programs, support groups, and public-health initiatives." Their website address is www.sharecancersupport.org and their Facebook address is www.facebook.com/SHARECancerSupport.

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.

Breast self-exams 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/symptoms/testing/types/self_exam/ 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.

Benign or non-cancerous breast conditions The UK based organisation Breast Cancer Care has a section called "Benign breast conditions" on this page www.breastcancercare.org.uk/breast-cancer-breast-health/diagnosis/benign/ 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.

Fertility 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. They make claim to being "... the global leader of the breast cancer movement, having invested nearly $1.5 billion since inception in 1982. As the world’s largest grassroots network of breast cancer survivors and activists, we’re working together to save lives, empower people, ensure quality care for all and energize science to find the cures. Thanks to events like the Susan G. Komen Race for the Cure®, and generous contributions from our partners, sponsors and fellow supporters, we have become the largest source of nonprofit funds dedicated to the fight against breast cancer in the world". You can find their website at http://www.komen.org.

"In 2008, we celebrated the 25th anniversary of the Susan G. Komen Race for the Cure, the largest series of 5K runs/fitness walks in the world, with well over one million participants since 2005" (quoted from their website).

They have a set of 26 forums (message boards) on various aspects of breast cancer including"Sound Off! Express your thoughts or feelings here on other subjects related to breast cancer" which had a total of 29346 threads and 257010 posts when I visited on 2nd April 2011, and the basic statistics for the forums were "21991 registered users have made 325392 posts in 26 forums. There are currently 42844 topics."

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. The address is www.bca.ns.ca.

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. Look for the link "Our Community" on their home page to find their range of support services, including a very active message board (forums), a chat room, and "outreach groups throughout the US that meet periodically to offer peer support and share resources".


Mother and Junior Koala image

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, try this direct link www.breastcancer.org/risk/factors/genetics.jsp or go to their home page at www.breastcancer.org and click on the link 'Breast Cancer Risk Factors' (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, click on the link "Information and Research" on their home page www.facingourrisk.org 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 website 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).

BreastFree at www.breastfree.org
"The Alternative to Reconstruction
Information, Advice, and Support
For women considering whether or not to have reconstruction
For women who have already decided against reconstruction"
If you're considering going breast-free or already going breast-free, I think you'll find this website a valuable source of information and support.

BrainMetsBC.org at www.brainmetsbc.org is a website created to provide information and support relating to breast cancer patients with brain metastases. 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.

The "Her2 Support Group" has a website at www.her2support.org where you will find information and support and an active set of forums (message boards). Forum statistics when I checked on 3rd April 2011 were "Threads: 34,037, Posts: 194,390, Members: 5,189".

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 run a very active group of forums - look for the link to TNBC Talk on their home page. Forum statistics when I checked on 4th April 2011 were "Our users have posted 79,500 Posts in 8,024 Topics in 10 Forum(s) ... We have 4,550 Forum Members".

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".

There's a section on inflammatory breast cancer on the website Breastcancer.org here www.breastcancer.org/symptoms/types/inflammatory/ including a list of common symptoms here www.breastcancer.org/symptoms/types/inflammatory/symptoms.jsp and a forum (discussion board) on the same site here http://community.breastcancer.org/forum/81.

You can also 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. They have a list of possible symptoms of inflammatory breast cancer here www.ibcresearch.org/symptoms.

There are also sections on inflammatory breast cancer on the American Cancer Society's website here www.cancer.org/Cancer/BreastCancer/MoreInformation/InflammatoryBreastCancer/index, and on the National Cancer Institute's website here www.cancer.gov/cancertopics/factsheet/Sites-Types/IBC.

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', on this page www.cancer.gov/cancertopics/factsheet/Sites-Types/pagets-breast. 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 the Macmillan website at http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Breast/Aboutbreastcancer/Typesandrelatedconditions/Pagetsdisease.aspx.

Roko Cancer (Stop Cancer) is "... an NGO working towards the cause of creating awareness and detection of BREAST CANCER, CERVIX CANCER & ORAL CANCER among the women living in the semi urban and rural areas of India. We provide free mammography and ultrasound to the women in the detection camps with the results on the spot."

"The Manjit Kaur Chawla, MKC TRUST was launched at London by Chawla Family ... followed by the launching of MKC ROKO CANCER CHARITABLE TRUST in India. The core vision behind the trust is to bring awareness of breast cancer and to provide early detection, leading to treatment wherever possible." ... "A vision anchored in the future that was flagged off by Mr. Ajinder Pal Singh Chawla and family in memory of his wife Mrs. Manjit Kaur Chawla, who lost her life to ... Cancer at a very early age."

Screening is done using two mobile cancer detection buses. More details are on their website at www.rokocancer.org and they also have a presence on YouTube and Facebook. They've also recently launched a cancer awareness drive in Ghana.

In Australia there's a very active breast cancer forum created by Janine called the Aussie Breast Cancer Forum at www.bcaus.org.au/forum/.

Update: I was unable to find the BreastBuddies website mentioned below when I did a links check on 27th August 2013. It may have been a temporary glitch or maybe it has a new address or no longer exists. The South African breast cancer website BreastBuddies Monica Pieterse was diagnosed with breast cancer in June 2008 and less than two months later she launched a South African breast cancer support and information website called BreastBuddies at www.breastbuddies.co.za. The site includes an active forum, with 150 members when I checked on 5th April 2011 and "Total posts 26182 Total topics 2109". To find the forum look for the link to "local community forum" on the home page.

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 breast cancer support forum and a "Breast Cancer: Stage 3 & 4" 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 links to the forums on their home page. Medhelp claims to be "The World's Largest Health Community Over 12 million monthly visitors"

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.org. "Take up the challenge of an Amazon Heart Adventure and develop lifelong friendships with other breast cancer survivors from across the globe". Update April 4th 2011 - I see there are as yet no scheduled Amazon Heart adventures for 2011. I wonder if the organisation is coming to the end of it's run.

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 https://mywebspace.wisc.edu/wwolberg/breast/breast.html. It was "Updated January 30, 2006" so it will be getting progressively more outdated as time goes by unless it's updated again.

"Friends in Need" is a 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.

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 is a very good discussion of male breast cancer on the Breastcancer.org website www.breastcancer.org beginning on this page www.breastcancer.org/symptoms/types/male_bc/index.jsp 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 5th April 2011 their overall forum statistics were "Threads: 404,007 Posts: 3,366,015 Members: 223,601". Eek!

There's a breast cancer community on the 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 "Support Groups" 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.

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.

Other mailing lists include:
The Breast Cancer Mailing List - 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;
A mailing list for those involved with metastatic breast cancer is 'BCMets.org - Metastatic Breast Cancer Information and Support', at www.bcmets.org;
IBC Support (inflammatory breast cancer help and support) runs a mailing list - 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 valuable

Below is an annotated list of numerous other websites a person diagnosed with cancer of any kind may find valuable on their journey. This same list appears on the pages for each cancer type on bestcancersites.com.

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.gov

Radiation 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. You can find a list of National Cancer Institute "NCI-Designated Cancer Centers" in the USA, by going to this page of the National Cancer Institute website www.cancer.gov/researchandfunding/extramural/cancercenters.

Numerous cancer-related websites and support groups have a presence on Facebook at www.facebook.com.

There are long lists of annotated links to cancer websites and organisations, on Nancy Novack's "Nancy's List" website at www.nancyslist.org.

Nancy is a stage 4 ovarian cancer survivor and a clinical psychologist. She says "As a survivor and clinical psychologist, I have had the honor to be invited into the lives of over 500 cancer patients at all stages of their disease. I work with men, women, children, teens, and young adults, from newly diagnosed to those lucky ones in remission, with all kinds of cancer. I also work with their partners, children, loved ones, and caregivers on the journey."

Nancy's site is a must to explore if you're looking for links to cancer sites for information and support for specific cancer types, for general cancer information, and there are other categories too including financial assistance, nutrititon, teens and young adult sites, and a lot more. I haven't had time to go through her lists of links but there are certain to be numerous links there that aren't on my pages.

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 StupidCancer website of the I'm Too Young For This! Cancer Foundation at www.stupidcancer.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.org

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 networking 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 www.facebook.com/groups/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.





Lori Hope and compassionate communications about cancer

portrait of Lori Hope

When Lori Hope was diagnosed with lung cancer in 2002, she turned her very extensive professional media skills and experience to a new challenge - learning and researching about how we can better and more compassionately communicate with and help those people in our lives who have cancer or other serious health problems.

She then set about sharing the collected wisdom she had accumulated - she wrote a book "Help Me Live: 20 Things People with Cancer Want You to Know", and has lectured and given interviews widely on the subject and continued to learn.

A very important aspect of the cancer journey is conversations about cancer - with relatives, partners, friends, work colleagues, members of medical teams, and many others. Until I encountered Lori Hope, I had no real conception of how challenging and important conversations about cancer can be for those with cancer, and for the people they converse with.

It's like opening a door with a sign saying "cancer conversations - enter here" and expecting to find a few people sitting around a coffee table in a living room, and instead you see in front of you a vast assemblage of people stretching into the distance. A colorful Woodstock crowd, with Lori Hope on stage singing about this long neglected field of human interaction.

You can explore Lori's world including links to some of her interviews and articles and to many sources of information and support for those with lung cancer, and information about her book and how to purchase it, on her website www.lorihope.com.

She also writes a professional blog "Hope for Cancer: what helps, what hurts, what heals" for CarePages.com here.

The collective experience is so much stronger than the experience of any one person, and Lori has gathered the collective experience of many many people in her book and her lectures and interviews and blog.

The world will be a much better place when we all know a lot more about how to communicate effectively and compassionately about cancer and other serious health issues we will inevitably encounter in our lives.

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".

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 Evaluating Online Sources of Health Information.

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:
Here are three good sources of information and support if you're a caregiver or about to become a caregiver. The American Cancer Society has a section called "Caregivers" here www.cancer.org/treatment/caregivers/index. The National Cancer Institute has a section called "For Caregivers, Family, and Friends" here www.cancer.gov/cancertopics/coping/familyfriends and the American Brain Tumor Association website has a section called "Caregivers" at www.abta.org/care-treatment/caregivers/. I'm sure there's plenty of good information and support for caregivers elsewhere on the internet too.


Financial and insurance resources

I haven't done a search for website information on financial and insurance resources and issues relating to paying for your cancer journey, but the links below will provide you with a good start to your search. A lot depends on which country you live in. For example in Australia we have a wonderful (in comparison to some other countries) and compassionate "free" ie taxpayer-funded health system for anyone who needs it. In the USA finding the money to fund a cancer journey can be a lot more challenging.

Here are some links to financial and insurance sections on big reliable cancer websites you may find useful:
http://www.cancer.org/Treatment/FindingandPayingforTreatment/ ManagingInsuranceIssues/HealthInsuranceandFinancialAssistancefortheCancerPatient/index

http://www.cancer.org/Treatment/FindingandPayingforTreatment/ManagingInsuranceIssues/index

http://www.cancer.gov/cancertopics/coping/financial-legal

http://www.breastcancer.org/tips/paying/

www.livestrong.org

www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Financialissues/Financialissues.aspx

The American Brain Tumor Association website at www.abta.org gives annotated links to numerous sources of financial assistance on their page "Financial Resources" at www.abta.org/care-treatment/support-resources/financial-resources.html.

Update 10th September 2013 to the next entry - I've checked the link referred to below to the Patient Advocate Foundation several times recently and it's not worked each time, and I've been unable to find PAF elsewhere on the internet. Maybe it's a temporary break - I suggest try the link and see what happens :-)

If you are a US citizen and "you or someone you know needs assistance with their insurer, employer and/or creditor regarding insurance, job retention and/or debt crisis matters relative to their diagnosis of life threatening or debilitating diseases", then the Patient Advocate Foundation at www.patientadvocate.org may be able to help you. Their mission statement says "Patient Advocate Foundation is a national non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relative to their diagnosis through case managers, doctors and attorneys. Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability."

They can also make available some valuable resources relating to financial management. "Patient Advocate Foundation seeks to empower patients to take control of their health care. Case managers work with patients to discover local, state, and federal programs that provide assistance for their individual needs. PAF has produced six major publications, several informational brochures, and several special sections devoted to certain health related topics to assist in this goal. Our case managers have also compiled a list of valuable resources that address several topics that you may find beneficial" (quoted from their website).

You might also be interested in looking at their "Empowering Events & Programs Join thousands of Americans from across the nation by participating in PAF sponsored empowering events."

Here's something to smile about I found on their website - a wonderful piece of roundabout writing: "Oncologists must become engaged in the financial realities that patients face in order to insure the integrity of the patient's future financial stability."

I will add more links here in due course.


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.

If you find any errors or broken links on this page, please send me an email at
everest@bestcancersites.com

Ed Everest, Adelaide, Australia

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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 on their website "BCNA is the peak national organisation for Australians affected by breast cancer, and consists of a network of more than 55,000 individual members and 285 Member Groups. More than 90 per cent of our members have had a diagnosis of breast cancer, and the remaining members have had a personal experience with breast cancer through a family member or friend". "Breast Cancer Network Australia (BCNA) works to ensure that women 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".

There's a wide 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. They run an online network (social network) where you can connect in real time with others affected by breast cancer, by posting public or private messages, posting blog entries, joining groups, and maintaining your own profile page. Among other activities they conduct "Field of Women" events, and 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 good breast cancer resource in Australia is the Westmead Breast Cancer Institute's website, formerly 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.

The Aussie Breast Cancer Forum provides support and information-sharing for Australians and New Zealanders with breast cancer. It has developed into one of the world's best regional or local breast cancer forums since its beginnings in 2005-2006. The address is www.bcaus.org.au/forum/.

Janine Gilbert was the creator and driving force behind the development of the forum. As she wrestled with breast cancer mets she could have spent the last few years of her life engaged mostly in her own personal persuits, but she chose to develop and run the forum and support its rapidly growing membership. The forum statistics when I checked on 20th February 2013 were "Total posts 161972 | Total topics 11708 | Total members 1676".

You may find valuable information on the primary website of the Federal Government's National Breast and Ovarian Cancer Centre at www.nbcc.org.au.

The Federal Government runs a free breast screening program, and you can read about it in the Cancerscreening.gov.au website's BreastScreen Australia Program section. Each state and territory also has a website devoted to this program. Links to each can be found here.

Update: when I searched for the following cancerinstitute.org.au support group list on 24th February 2013 I could not find it. You may have better luck or maybe it's no longer there. I suggest ringing the following number and asking about support groups in your area: "Cancer Council Helpline Phone 131120". Now for my original entry: 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 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 their website at www.breacan.org.au.

Breast Cancer Care WA (formerly 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 including one for young women with advanced breast cancer, a healing room "aiming to provide complimentary therapy to survivors of breast cancer and ladies currently undergoing breast cancer treatment", and they employ two breast care nurses, and offer counselling "free of charge for anyone who has been diagnosed with breast cancer and also for family members, carers and friends of those diagnosed".

"With the support of BHP Billiton, Breast Cancer Care WA is working with communities across the state to educate Indigenous women about breast cancer, to connect them with available services should they be diagnosed and to collaborate with other health agencies to improve these services and the referral process".

Lymphoedema 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.

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.org. "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.

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.

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.

The groups are being funded by Queensland Health, but the service running the groups - The Women’s Psychotherapy Service Inc - "is not a free service, nor is it a funded service. Fees are charged on a sliding scale and are negotiated on an individual basis."

They say the advanced breast cancer group "...is a supportive/expressive group, modelled on the work of Dr David Spiegel (Stanford University), author Living Beyond Limits: New help and hope for facing life threatening illness". There is more information about the nature of the group on this page www.advancedbreastcancergroup.org/referrers-and-health-professionals/.

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New Zealand Breast Cancer Websites

Free breast screening for women in New Zealand is provided by the national breast screening programme BreastScreen Aotearoa, if you meet certain criteria outlined on their website at http://www.nsu.govt.nz/current-nsu-programmes/breastscreen-aotearoa.aspx.

Breast Cancer Network New Zealand is "First and foremost ... a volunteer group welcoming all New Zealanders who have experienced breast cancer and supporters. It's our goal with our website, magazine, projects and resources to provide information about many aspects of breast cancer, to ask some hard questions and to link people together." Their website address is www.bcn.org.nz. It's an energetic website with a variety of information and support relevant to anyone involved with breast cancer in New Zealand.

The New Zealand Breast Cancer Foundation is "... a non-government funded charitable trust promoting awareness of breast cancer, providing information and education, and raising funds to support breast cancer related initiatives including research, scholarships, medical grants, community education and a breast cancer patient register. The Foundation was specifically established to educate all New Zealanders on the life-saving benefits of early detection and the importance of mammograms". Their website is at www.nzbcf.org.nz and it's well worth visiting if you have an interest in any of these activities or in volunteering in this field.

Breast Cancer Support - www.breastcancersupport.co.nz - "empowering New Zealand women emotionally on their journey with breast cancer The women of BCS offer support & encouragement from a positive personal experience to others who have had a diagnosis of breast cancer". They run some siupport groups in the greater Auckland area "coordinated by women who have experienced breast cancer. The meetings provide an opportunity for women with a present or past breast cancer diagnosis to meet in an informal environment for mutual support and encouragement".

The Cancer Society of New Zealand consists of a national office in Wellington and six regional divisions. Their website is at www.cancernz.org.nz. There's information about each division on the page www.cancernz.org.nz/about-us/divisions/. Their resources include a booklet you can dowload called "Breast Cancer (Te Mate Pukupuku o nga U)". I haven't read it although I did notice some good explanatory diagrams - much of it is in both English and Maori.

They run some forums including a breast cancer forum - look for the link "CancerChatNZ Online Chat Forum" on the home page. It's not particularly active so I suggest also using the very active Aussie Breast Cancer Forum at http://www.bcaus.org.au/forum/ where you will find some fellow New Zealanders among the many friendly Australians :) .

Look Good Feel Better has a New Zealand website at www.lookgoodfeelbetter.co.nz. They say "Look Good Feel Better is a free service offered to women undergoing treatment for cancer. Our aim is to help restore and enhance the appearance of cancer patients both during and after treatment. We offer guidance, information and makeover expertise at special workshops throughout New Zealand."

You can find out about dragon boat racing for breast cancer survivors in New Zealand and get contact details for teams around the country on the Busting with Life team website at www.bustingwithlife.org.nz.

Lymphoedema Support Network at www.lymphoedema.org.nz - "We are the main support network within New Zealand for people affected by primary and secondary lymphoedema".

Breast Cancer Aotearoa Coalition (BCAC) www.breastcancer.org.nz

Pink Pilates www.pinkpilates.co.nz

Sweet Louise at www.sweetlouise.co.nz : "We offer information, advice, support and a range of practical and therapeutic services that will help women with secondary breast cancer lead more positive lives".

If you know of any other valuable New Zealand websites or other resources relating to breast cancer you think should be added to this New Zealand section, please email Ed with the info.

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/

If you find any errors or broken links on this page, please send me an email at everest@bestcancersites.com

Ed Everest, Adelaide, Australia

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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.

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