There's a valuable annotated page of useful links relating to cancer on Denis Strangman's website 'The Canberra One-Stop Cancer Web-Shop' "Dedicated to helping cancer patients and carers in the ACT and NSW Southern Area health region locate reliable web resources of interest to them." Its address is www.hotkey.net.au/~string/listing.htm - scroll down the home page to find the list of links. Some of the links it lists are to Australia-wide and international sites so it's worth
a visit wherever you are in Australia.
"Look Good...Feel Better" at www.lgfb.org.au:
"... a free community service program dedicated to helping women undergoing treatment for cancer. The purpose of the program is to help women manage the appearance related side effects of chemotherapy and radiotherapy, thereby helping to restore their appearance and self image.
Look Good...Feel Better is an initiative of the member companies of the Cosmetic,Toiletry and Fragrance Association of Australia, (CTFA) who established the program in Australia in 1990. Since that time over 32,000 women living with cancer have been helped by the program."
Camp Quality's website at www.campquality.org.au: "Camp Quality is a non profit organisation that is committed to bringing hope and happiness to every child living with cancer, their families
and communities through ongoing quality recreational, educational and financial support programs." To register "You must be between the ages of 0-18 years and have been diagnosed with cancer". ... "Camp Quality is an international charity with the first office being established in 1983 in Sydney, Australia. There are 14 offices throughout Australia covering every state and territory. Over 5,000 families each year are supported by Camp Quality; they participate in our camps and other activities. Nationally there will be approximately 185 camps and recreational activities held in Australia in 2005."
Cancer Council Western Australia (www.cancerwa.asn.au) is offering free Life Now yoga and meditation classes: "Are you or someone you care about living with cancer? We invite people living with cancer, their carers and family members to take part in this free program".
They also offer a free Life Now exercise program. "The program includes a personalised program and admission to 2 classes per week, and requires a 12 week commitment (health permitting). ... The program is free to cancer patients who have undergone treatment within the last two years and their carers. There may be a once off fee for your initial assessment with our qualified Exercise Physiologist, this is dependent upon your GP and private health care fund".
See their flyer on these programs for more details here, and a relevant page on the Cancer Council Western Australia website is www.cancerwa.asn.au/patients/support-and-services/life-now/ . My thanks to Sarah McLean who is the Life Now Project Officer for the Cancer Council of WA for sending me this information.
Petrea King on the Petrea King Quest for Life Centre and Quest for Life Foundation
website at www.questforlife.com.au says "Providing services that assist people to reconnect with their spirit and establish peace in their lives has been my passion since my recovery from leukaemia in 1984. Together with a dedicated team of health professionals, we
have been providing services for people living with the challenges of serious, chronic and life-threatening illness, grief, loss and trauma since 1985."
"The Quest for Life Centre was established in its own premises in 1998 in beautiful Bundanoon in the Southern Highlands of NSW, Australia."
Elsewhere on the website it says "The Quest for Life Foundation was established in 1990 by Petrea King to further her work. Since her recovery from leukaemia in 1984, Petrea has devoted her life to counselling people, facilitating support groups, running residential programs and lecturing widely on health and healing."
You can find details of the Foundation and Centre and their upcoming programs on the website, and you can also listen to some of her past radio interviews on the ABC.
The Gawler Foundation was established as a non-profit organisation in 1983 by Dr Ian Gawler following his recovery from bone cancer. "The Gawler Foundation is committed to an integrated approach to health, healing and wellbeing that includes the body, emotions, mind and spirit. We call this integrative medicine. Our mission is to work within a integrative medical framework to provide access to the best possible instruction and support for the mplementation
of self-help techniques."
They run the Yarra Valley Living Centre near Melbourne and offer both residential and non-residential programs. You can read about the Foundation and what it has to offer on their website at www.gawler.org.
The Cancer Council NSW has a good Recommended Reading List page on their website for books on cancer, and some links to cancer-related websites too. "We're often asked to recommend good books and websites about cancer. Here is our selection."
The direct link to the page is www.cancercouncil.com.au/editorial.asp?pageid=721
Can Assist (Cancer Assistance Network) formerly known as the Cancer Patients Assistance Society of NSW "... helps cancer patients, predominately from rural NSW, by
providing accommodation, comfort, financial assistance and emotional support for patients and their carers."
"For 50 years, Can Assist, the Cancer Assistance Network, has been caring for NSW cancer patients and their families through a network of volunteers and members in 37 Branches across rural and regional NSW. We own and operate three patient care facilities - Jean Colvin Hospital, which is a fully Accredited hospital and located in Darling Point - Sydney, Ecclesbourne which is a bed and breakfast facility for patients and their carers and Lilier Lodge which also caters for cancer patients and their carers and is co-owned with the Cancer Council - located in Wagga Wagga. These facilities are situated close to treating hospitals."
Their web address is www.cancerpatients.com.au.
The Australian website Virtual Cancer Centre at www.virtualcancercentre.com has information about cancers and their treatments, and about drugs used to treat cancers. It's a resource primarily designed for health professionals, but if you are a patient or supporter researching a cancer and its treatments you
may find useful information here. "Established in April 2002 virtualcancercentre.com has been compiled by Australian medical professionals and industry to be a comprehensive online cancer information, news and education knowledge hub ...". The website is part of a larger commercial enterprise Virtual Medical Centre atm www.virtualmedicalcentre.com.
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/559.asp.
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.breastcancernetwork.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
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.
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.
Breastcancer.org has a very good section on hereditary aspects of breast cancer and genetic
testing. To find it, go to their home page at www.breastcancer.org/, and
click on the link 'Lower Your Risk' at the top of the page and then click
on the link 'Genetics and Breast Cancer' near the top of the new page. The
article discusses many aspects of the subject including the pros and cons
of being tested. Breastcancer.org also has some of the best and most active
breast cancer forums on the internet, including a forum called "For high-risk
women Share and support others who have a higher risk for developing
breast cancer".
The National Cancer Institute (USA) also has very good articles on genetic testing.
To find them, go to their Cancer Genetics gateway page at www.nci.nih.gov/cancertopics/prevention-genetics-causes/genetics
and scroll down the page. One is called "Genetic Testing
for BRCA1 and BRCA2: It’s Your Choice", and another is called "Genetic Testing for Breast and Ovarian Cancer
Risk: It's Your Choice". Alternatively, go to their home page at www.cancer.gov/
and type genetic testing into the search window at the top of the page.
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 - 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.
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/
Males and breast
cancer
Males do 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.
Most of the information about breast
cancer on the net is applicable to males as well as to females so
my suggestion for males in Australia looking for information on
the internet about breast cancer is to visit the same websites as
you would if you were a female.
There is a detailed, in-depth and easy to understand discussion of male breast
cancer on the US-based website Breastcancer.org (http://www.breastcancer.org/) beginning on this page
http://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 at
http://www.facingourrisk.org/.
If you are concerned about hereditary
forms of breast cancer I suggest visiting this article http://www.bestcancersites.com/breast/#Hereditary to find links
to relevant information on the internet.
As mentioned above, the National Breast
Cancer Centre has recently launched a website for men
diagnosed with breast cancer or concerned about a breast change.
The address is http://www.breasthealth.com.au/men.
More Australian
and New Zealand breast cancer resources
I will be adding more
information here soon! If you know of any other Australian or New Zealand breast
cancer resources you think should be listed on this page (or you
find any errors or broken links), please email Ed.
Ed
Everest (author of this guide).
Page last
updated April 2011
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