A guide to the
world’s best and most popular testicular cancer websites
for information and support
This is a summary of the best websites I could find around the
world for testicular cancer, both for general information (symptoms, treatment
options, research, etc) and for forums (message or discussion boards) and
other kinds of support. And for those living in Australia there is information
about Australian websites here.
If
you have an involvement with testicular cancer an excellent website devoted
to the topic is “TC-Cancer - Testicular Cancer Information & Support”
at www.tc-cancer.com. This website
has lots of information on testicular cancer eg on how to do a self-exam,
symptoms, kinds of treatments, and there are some very active forums and
a chat room. The direct link to their forums index page is www.tc-cancer.com/forum/index.php.
The
website also has a very good “Testicular Cancer Links” page at www.tc-cancer.com/tcarticles.html
which is not overly long and it’s very easy to browse - each link has a
one line description. If only all cancer-related websites had a similar annotated
links page.
Another excellent testicular cancer organisation and website
is the Testicular Cancer Resource Center at www.acor.org/TCRC/. "The Testicular Cancer
Resource Center is a charitable organization devoted to helping people understand
testicular and extragonadal germ cell tumors. Specifically, we provide accurate
and timely information about these tumors and their treatment to anyone and
everyone interested. We have information for patients, caregivers, family,
friends, and physicians."
Again there is a lot of information on this site - about testacles,
self-examination, questions to ask your doctor, staging, treatments, what
to do when treatment has finished, and plenty more. They also have an excellent
links and resources page - and again it's one of the best I've seen anywhere
on the net on any cancer website, and if you want to look for additional websites
relating to testicular cancer please do explore it - go to their home page
at http://tcrc.acor.org and click on 'TC
Links & Articles'. They say "Without question, the Testicular Cancer
Resource Center hosts the largest collection of testicular cancer related
links on the Internet!" I can believe it.
They also run two mailing lists hosted by ACOR - the Association
of Cancer Online Resources - TC-NET and TC-SUPPORTERS. They describe them
thus. "Two online email support groups designed to make it easy for you to
communicate with other survivors, patients, caregivers, and generally anyone
who is interested in testicular cancer."
"TC-NET is the primary testicular cancer email support group.
The list usually has somewhere between 600 and 700 subscribers. Many people
on the list have been on it for years, but many others only stay online during
the period between diagnosis and the end of treatment. Any topic related
to testicular or extragonadal germ cell tumors is welcome, but this list
does tend to be slightly more medical and treatment related than the other
list. On average, the list generates 15-25 emails a day, less on weekends."
"TC-SUPPORTERS is our second testicular cancer email support
group. This list was intended to be a place where caregivers could talk apart
from the patients. This usually works OK, but since the questions usually
fall back into the medical realm, the conversations move over to TC-NET.
This list usually has somewhere between 150 and 200 subscribers. Any topic
related to testicular or extragonadal germ cell tumors is welcome, but questions
and discussions about caring for (or dealing with) TC patients are the primary
purpose for this list. In contrast to TC-NET, TC-SUPPORTERS only generates
10-15 emails a month. The emails on this list tend to be bursty. In other
words, you might get 5 one day and none for two weeks."
To subscribe to these lists, you can go to these direct links:
TC-NET
and
TC-SUPPORTERS. Or alternatively 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'.
One of the best places to go for information on testicular cancer
and its treatment is the website of the U.S. Government's National Cancer Institute at www.cancer.gov. The section devoted to
testicular cancer gives an easy to read and easy to understand description
of what testicular cancer is, how it is diagnosed, treatment options, descriptions
of treatments, and more.
To locate the section on testicular cancer, click on this link
www.nci.nih.gov/cancertopics/types/testicular.
Alternatively, go to their home page, find the heading “Types of Cancer”
and click on the link “A to Z List of Cancers” and hunt down "Testicular
Cancer” in the alphabetical list.
Another
source of information is the American Cancer Society website at www.cancer.org. On their home page, click on the link "Choose a cancer topic" and
find and click on Testicular Cancer in the alphabetical list that displays
and then click on Go. They have many other
resources too for those involved with cancer so it's well worth browsing
their site for additional information and support that may be relevant to
your situation.
The big United Kingdom cancer website Cancerbackup at www.cancerbacup.org.uk has a section on testicular cancer beginning on this page
www.cancerbacup.org.uk/Cancertype/Testes.
Andrology Australia (The Australian Centre of Excellence in
Male Reproductive Health - an Australian Commonwealth Government initiative)
has a website at www.andrologyaustralia.org
which includes considerable information on testicular cancer, and it has
other sections on prostate disease, male infertility, androgegen deficiency,
impotence, and information on the structure and function of the male reproductive
system. The direct link to the section on testicular cancer is
www.andrologyaustralia.org/pageContent.asp?pageCode=TESTICULARCANCER.
The Canadian Testicular Cancer Association was founded by Cheryl Fried whose son Adam's testicular cancer went undiagnosed and unrecognised for three years. Their website address is www.tctca.org.
On their brochure they say "Testicular cancer is the #1 cancer in young men ages 15-35; yet most men are completely unaware of it. World wide there are 48,500 new patients diagnosed with testicular cancer each year ...".
Their vision is to "... educate the public about Testicular Cancer so no young male goes undetected". Their focus is on educating school students and the public about testicular cancer and the importance of self examinations. "The Check 'em campaign in our school's is the organization's major education initiative. We have begun this year in March 2008 and have already reached over 10,000 students across the waterloo region with our public education program and this is just the beginning." If you would like to help them achieve their vision, there's a volunteer application form on their website.
Fertility issues - important! If you've just been diagnosed with testicular cancer and you may want to father any children in the future, it's really important to discuss fertility issues with your medical team before treatment commences. Semen can be frozen and stored for later use if necessary (sperm banking) and it's a simple procedure.
There is a very good and easy to understand discussion about male infertility and cancer on the Lance Armstrong Foundation's Livestrong website www.livestrong.org on this page www.livestrong.org/site/c.khLXK1PxHmF/b.2660703/k.33CA/Physical_Effects_Male_Infertility.htm.
These webpages give brief overviews of fertility issues
www.andrologyaustralia.org/pageContent.asp?pageCode=SPERMSTORAGE
www.cancerbackup.org.uk/Cancertype/Testes/Aftertreatment/Sexlifefertility
There are links to some websites with information and support on fertility issues on this webpage www.bestcancersites.com/fertility.
The National Comprehensive Cancer Network (NCCN) is “an alliance
of 19 of the world's leading cancer centers, ... an authoritative source
of information to help patients and health professionals make informed decisions
about cancer care. Through the collective expertise of its member institutions,
the NCCN develops, updates, and disseminates a complete library of clinical
practice guidelines. These guidelines are the standard for clinical policy
in oncology” - (quoted from their website). If you want to take a role in
planning your course of treatment in consultation with your medical health
providers then you may find these guidelines valuable.
A physician-friendly version of the NCCN guidelines for testicular
cancer can be found by going to this webpage www.nccn.org/professionals/physician_gls/default.asp,
and a patient-friendly version may in the future be prepared in collaboration
with the American Cancer Society and a link to it posted here:
www.nccn.org/patients/patient_gls.asp
If you want to delve deeper into any aspect of cancer, a good
source of information is Medlineplus at www.medlineplus.gov. It's a service
of the U.S. National Library of Medicine and the National Institute of Health
and it’s a big well-organised and easily searchable site. The link to the
section on cancers is www.nlm.nih.gov/medlineplus/cancers.html
and the link to their section on testicular cancer is www.nlm.nih.gov/medlineplus/testicularcancer.html.
World General Cancer-Related Websites
Other websites you may find valuable
Cancerbackup at www.cancerbackup.org.uk is "The UK's leading cancer information site: your one-stop site with over 6,000 pages of up-to-date cancer information, practical advice and support for cancer patients, their families and carers."
They've recently started a social networking site called What Now at www.whatnow.org.uk "... a cancer community that really lets you get in touch with other people affected by cancer. Chat in the chatrooms, discuss on the forums, send private messages, upload videos and pictures ...".
There's also a section on the Cancerbackup website called Teen Info on Cancer "...easy to understand cancer information written for young people" and a social networking cancer community for teens. You can find links to these on the Cancerbackup home page.
If you live in Canada I suggest checking out the Canadian Cancer Society
website at www.cancer.ca
and searching for information and resources relevant to Canada and your
local region. The website comes in both English and French language
versions.
There are links to lymphedema websites on this page www.bestcancersites.com/lymphedema.
Various cancer treatment centres and medical teams around the world have set up websites to provide information on their facilities and services, and they may have quite detailed information about various kinds of cancers and their treatments. If you visit their websites it pays to be aware they are promoting their own particular facilities and treatments. Nevertheless their websites can be valuable sources of information as they are right at the coal face for treatment and research. Two good ones to explore are the Dana-Farber Cancer Institute in the USA at www.dana-farber.org and the Sidney Kimmell Comprehensive Cancer Center at Johns Hopkins in the USA at
www.hopkinskimmelcancercenter.org. There's a list of USA cancer centers with links to their websites on this page of the National Cancer Institute website www.cancercenters.cancer.gov/cancer_centers/cancer-centers-names.html.
Cancercare is a large USA-based organisation "that provides free,
professional support services for anyone affected by cancer." On their
website at www.cancercare.org
you can find some information resources, advice on such matters as financial
assistance, and counseling services (online, telephone and face-to-face).
There are also some online support groups or forums.
Websites created for adolescents-teens
and young adults with cancer
There are a small but growing number
of websites created specifically for adolescents-teens and young adults
with cancer.
If you're in one of these age groups and you've been diagnosed with cancer,
I suggest making the website of the I'm Too Young For This! Cancer Foundation
at www.imtooyoungforthis.org
one of your first ports of call, exploring the site, and checking out
their comprehensive list of other cancer-related internet resources for
adolescents-teens and young adults. Look for the heading "Support Channels"
on the home page: "The channels below will connect you with hundreds of
age-appropriate resources and open the door to socially network with countless
thousands of young adult survivors and caregivers".
I'm Too Young
For This! also has a presence
on several social newtworking websites including Facebook at www.facebook.com/group.php?gid=2255009406 and Myspace at
www.myspace.com/imtooyoungforthis.
The Foundation and website is the creation of concert pianist and
composer Matthew Zachary who at the age of 21 was diagnosed with brain
cancer. Not only has he continued his musical career since his diagnosis
but he's turned some of his creative energies to developing the I'm Too
Young For This! Foundation and website as a "...survivor-led advocacy,
support and research organization working exclusively on behalf of survivors
and care providers under the age of 40".
Here's an estimate given on the I'm Too Young For This! website
of the numbers of people in the adolescents-teens and young adult age
groups affected by cancer in the USA alone. You can multiply these figures
by twenty to get an idea of the numbers for the entire planet. "... there
are (in the US) in excess of 1,000,000 young adults aged 15-39 currently
living with through and beyond their cancer diagnosis and treatment. This
statistic also includes long-term survivors of childhood cancer. Furthermore,
if you add adults over 39 who were diagnosed as young adults or , we're
looking at nearly two million people. ... But wait! There's more! Survivorship
is not just about the patient! Caregivers matter, too! So, if you now account
for young adult spouses, siblings, children and parents, we're pretty much
talking eight figures of people (>10,000,000)."
So if you're in the adolescents-teens or young adult age groups
and you've been diagnosed with cancer at some time in your life, you
aren't alone!
Realtime Cancer at www.realtimecancer.org
is a Canadian organisation and website for young adults involved with cancer.
It was established in 2000 by Geoff Eaton who was diagnosed in 1998 at
age 22 with leukemia.
Among the resources on the website there are many survivor and supporter
profiles or stories, a forum, news and articles, and a list of the different
support groups in Canada specifically focused on young adults (look for
the thread in their forum titled "Local Young Adult Support Groups!").
They also run a public education program.
There's plenty on their website that will be of interest to young
adults with cancer wherever they live in the world, and to those working
to improve services and support for young adults with cancer.
Patty has created a comprehensive website called the Pediatric Oncology Resource Center at www.acor.org/ped-onc, for parents, friends, and families of children who have or had childhood cancer. There's a wealth of information on her site, including an annotated list of links to many teen and some young adult web sites and support groups on this webpage www.acor.org/ped-onc/cfissues/teens.html.
Planet Cancer is a USA-based organisation
and website for young adults with cancer. It was founded in 1995 by Heidi
Adams, Robin Blue and Paul Cox who were
all wrestling with cancer in their twenties at the time. The Planet Cancer website at www.planetcancer.org
mixes irreverance and humour with support including forums and
chat, information and news and
retreats, and social networking.
Reducing
the isolation many young adults with cancer feel is a key aspect of Planet
Cancer's mission. They
provide information on various ways for young adults with cancer to connect
with each other, including:
"A clearinghouse for [list of] young
adult groups around the country [USA], including official support groups,
camps and more informal gatherings. Let us know about your local group,
so that we can spread the word to others in your area" ...
... a list of "Camps around the country that hold sessions specifically
for young adults with cancer. Some of these are provided free of cost
to cancer survivors and their families" ...
... "if you're looking to connect with another
cancer survivor on a more personal basis than you could online or in a
support group ... Several matching services exist for young adults going
through cancer who would like to meet or talk to someone else who has had
a similar experience. If you want to get REALLY personal there's also an
online dating community!".
Planet Cancer has recently added a valuable new resource that's bound
to be popular - a social networking site for young adults with cancer at http://myplanet.planetcancer.org.
Members can join groups or form their own groups, share photos and videos,
participate in the forums and chat, and run their own blogs. Planet Cancer also has a presence on Facebook at
www.facebook.com/group.php?gid=4614089667.
The big United Kingdom based website www.cancerbackup.org.uk has a section on cancer for teenagers including a teens social networking cancer community "Write a blog, chat on the forums, send messages, make friends - you can do all this and much more ...". Look for a link to TIC on their home page or try this direct link www.click4tic.org.uk.
If you explore the websites I've described
above, including their links and resources pages, you'll find a variety
of other websites and resources relevant to adolescents-teens
and young adults with cancer.
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New entry 18th April 2008: The website Chemocare.com at www.chemocare.com is described as "designed to provide the latest information about chemotherapy to patients and their families, caregivers and friends. We are here to help by supplementing what you may already have learned from your healthcare professional". If you're involved with chemotherapy either as a patient or as a supporter, caregiver or health provider, I suggest visiting this site and exploring for information that may be relevant to your situation.
There are easy-to-understand sections called "What is Chemotherapy", "Managing Side Effects", "Eating Well During Chemotherapy", "Before and After Chemotherapy", "Complementary Medicine" and "Survivor Experiences". There's also an active message board (forum) where you can share information, experiences and support.
In the section "Chemotherapy Drugs" there is an A to Z list of chemotherapy drugs which includes detailed information about what each drug is used for, how it's administered, side effects, and how the drug works.
They cast their net fairly widely. They say "Sometimes referred to simply as "chemo", chemotherapy is used most often to describe drugs that kill cancer cells directly. These are sometimes referred to as "anti-cancer" drugs or "antineoplastics." Other chemo drugs such as biologic response modifiers, hormone therapy, and monoclonal antibodies, which work in different ways to treat cancer, are included in this web-site. Today's therapy uses more than 100 drugs to treat cancer."
Chemocare.com is a website of the Cleveland Clinic Taussig Cancer Institute (a cancer hospital in the U.S.).
The website RxList at www.rxlist.com - self-described as “The Internet Drug
Index providing fast, reliable information to both the consumer and the
medical professional” - has information about hundreds of medicinal drugs
and also active forums or discussion boards on the more popular drugs as
well as forums for discussing less popular drugs and alternative therapies.
The link to their forums index page is www.rxlist.com/rxboard.htm.
A good website for finding clinical trials relating to any type of
cancer is the USA Government’s National Cancer Institute site at www.cancer.gov - go to
their home page and click on the link Clinical Trials, or click on this
direct link www.cancer.gov/clinicaltrials.
There’s another USA Government website called ClinicalTrials.gov at
www.clinicaltrials.gov
where you can search for trials. “ClinicalTrials.gov offers up-to-date
information for locating federally and privately supported clinical trials
for a wide range of diseases and conditions” and “ClinicalTrials.gov currently
contains approximately 12,600 clinical studies sponsored by the National
Institutes of Health, other federal agencies, and private industry. Studies
listed in the database are conducted in all 50 States and in over 100 countries.
ClinicalTrials.gov receives over 4 million page views per month and hosts
approximately 17,000 visitors daily.”
I suggest starting your search for clinical trials with the National
Cancer Institute site and then trying the ClinicalTrials.gov site. I
don't know if ClinicalTrials.gov includes the same database as the NCI
site but it doesn’t use the same search form so it might turn up something
different anyway. Both sites include trials around the world as well as those
in the USA.
You could also try the “American Cancer Society /EmergingMed Clinical
Trials Matching Service ... This free Clinical Trial Matching and Referral
Service is made available to American Cancer Society visitors through a
collaboration with EmergingMed. ... Fill out one questionnaire and within
seconds you'll know if your profile matches any clinical trials in our
system. The EmergingMed database contains more than 3,000 clinical trials
for treatment, prevention and early detection of cancer.” Look for the link
to clinical trials on the home page of the American Cancer Society at www.cancer.org or try
this direct link http://clinicaltrials.cancer.org.
If you have concerns about fertility in relation to cancer and its treatment,
go to this page www.bestcancersites.com/fertility for links to websites
with information and support on fertility issues.
NORD - the National Organisation for Rare Disorders - on their website
at www.rarediseases.org
has a database of rare disorders including many rare cancers. The database
gives a list of alternative names for each disorder, some basic information
about the disorder, and a list of organisations related to that disorder.
Daily Strength at www.dailystrength.org is a new website devoted to hosting support communities "for all health issues & life challenges". They say "DailyStrength was built to enable people facing life challenges to: a) simply and easily communicate their progress with friends, family, supporters, and have those people respond with encouragement and help. b) find others facing the same circumstances, and exchange experiences, treatments and even hugs within a safe community setting." Currently there are thirty-eight support communities for different kinds of cancers (including some poorly represented elsewhere on the internet), and communities for many other health issues you may be interested in such as lymphedema and fertility matters. The website is well set out and participation in communities is simple. You can post messages, and keep a journal and upload photos and videos if you wish.
There are links to nutrition and excercise guidelines on this webpage
nutrition
and excercise guidelines. It says in part "It would be pretty safe
to say that the basic principles of healthy diets and good excercise are
now well understood by scientists, and the information is available in the
form of easy to understand nutrition and physical activity guidelines on
the internet and in print. If we want to get our general eating and excercise
habits up to world's best practice for humans going about their everyday
lives on planet Earth, we can do it using these guidelines, adjusting the
information to suit our particular circumstances."
For anyone considering trying an alternative treatment for cancer (one
that is not mainstream medicine and scientifically demonstrated to be
safe and beneficial) the website Quackwatch has a very good section on
their site called “A Special Message for Cancer Patients Seeking "Alternative"
Treatments”. It will help you decide whether an alternative treatment you
are considering is safe and might be beneficial in some way, or whether
it might be unsafe and/or fraudulent. The direct link is www.quackwatch.org/00AboutQuackwatch/altseek.html or
you can find the link on their home page at www.quackwatch.org.
The American Cancer Society website has a valuable section called "Complementary
and Alternative Therapies". It's buried deep in their website and difficult
to find - there's no link to it from their home page. Try this direct link
www.cancer.org/docroot/ETO/ETO_5.asp?sitearea=ETO or
else put the word alternative into the search window on the home page at
www.cancer.org and
look for a link to the section in the search results. If you're thinking
of trying a specific alternative or complimentary treatment you've come
across on the internet or elsewhere you may find information about it in
this section.
Another website that discusses the subject of alternative treatments
in some detail is the website of the National Center for Complementary
and Alternative Medicine at www.nccam.nih.gov.
The American Cancer Society has a very good information page giving
advice on how to use the internet for finding information on cancer, and
how to determine if that information is reliable. The direct link to it
is Cancer Information on the Internet.
CaringBridge at
www.caringbridge.org
and CarePages at www.carepages.com
are two websites that enable you to create your own free personalised
webpages and develop your own internet community for yourself or someone
you are supporting. These websites are very popular and worth checking out
if you or someone you know has been visited by cancer and would like a
rallying place on the internet.
Don't know what a cancer-related word or term means or need to check
spelling? The National Cancer Institute (US) has an online cancer dictionary
with more than 4,000 terms related to cancer and medicine at
www.cancer.gov/dictionary.
You can find guides to the best websites for other cancer types on my
website www.bestcancersites.com.
More suggestions please
If you know of any other good testicular cancer websites large or small,
or active forums (message or discussion boards) or mailing lists on testicular
cancer you would like to see added to this page, or you find any errors
or broken links, please send me an email at
everest@bestcancersites.com.
Ed Everest, Adelaide, Australia
Page modified 22nd September 2007
top of page
Australian
Testicular Cancer Websites
There do not appear to be any websites based in Australia run
by a support group and devoted to testicular cancer, but as mentioned above,
there is a website set up by the Commonwealth Government which includes considerable
information on testicular cancer, and it has other sections on prostate disease,
male infertility, androgegen deficiency, impotence, and information on the
structure and function of the male reproductive system.
They say "Andrology Australia (The Australian Centre of Excellence
in Male Reproductive Health) was recently established with funding from the
Commonwealth Government and officially launched in 1999 ... The aim of the
Centre of Excellence is to assist Australian men with a range of reproductive
health problems by undertaking programs to improve knowledge and provide much
needed education in specific areas of male reproductive health".
They describe andrology as "The study of the functions and diseases
specific to males, especially of the reproductive organs. The equivalent
to gynaecology for women."
Their web address is www.andrologyaustralia.org,
and the direct link to their section on testicular cancer is
www.andrologyaustralia.org/pageContent.asp?pageCode=TESTICULARCANCER
.
The Cancer Council New South Wales has a
good information page called ‘Understanding Testicular Cancer’ where you
can read about symptoms, diagnosis and treatments - the direct link to it
is www.cancercouncil.com.au/editorial.asp?pageid=894.
If you want to participate in a forum on testicular cancer I
recommend you try the ones on the TC-Cancer website at www.tc-cancer.com
first. The direct link to their forums index page is www.tc-cancer.com/forum/index.php.
Australia General php page
Other Australian websites you may find valuable
The biggest cancer-related
organisation in Australia is "Cancer Council Australia" - an umbrella
organisation that encompasses a Cancer Council based in each state and
territory. The link to their home page is www.cancer.org.au
where there is a variety of information relating to cancer in Australia,
and links to each state-based Council website.
The state-based Council
websites are valuable sources of information about locally-based support
groups, and a variety of other services they may offer, such as phone-in
support, peer support, and discussion of different kinds of treatments.
You can find links to the state and territory Cancer Council sites here
www.cancer.org.au/aboutus/ourmembers.htm.
If you are looking for a cancer support group in your area you may be
able to locate one by searching on your state or territory Cancer Council
website.
The Cancer Council New South
Wales runs a large website at www.cancercouncil.com.au
and it's well worth checking out whether or not you live in NSW.
The Cancer Institute (NSW)
was established in 2003 by an act of parliament called The Cancer Institute
(NSW) Act 2003. Some of its objectives as stated in the Act are "to
reduce the incidence of cancer in the community ... to improve the quality
of life of cancer patients and their carers ... to operate as a source
of expertise on cancer control for the government, health service providers,
medical researchers and the general community".
Their website is at www.cancerinstitute.org.au.
"The Cancer Institute NSW is Australia's first statewide, government
supported cancer control agency." They have developed a Cancer Services
Directory which "aims to bring together information on treatment, services
and support for patients and their carers". It includes the following
publications:
- an online listing of cancer treatment centres in NSW;
- "A-Z Directory of Support Groups 2005 (4.9mb PDF): A list of support
groups operating in suburbs, towns and cities throughout New South Wales
and the services they offer";
- "Accomodation Guide 2005 (636kb PDF): A directory of accommodation
providers near to all the major cancer treatment centres in New South
Wales";
- "A-Z Directory of Cancer Publications 2005: Lists over 200 cancer
publications, a summary of each brochure's contents and details of how
to obtain them."
There are some other publications including The Cancer Prevention
Plan ("This booklet provides simple guidelines to help reduce your risk
of cancer"), cancer statistics for NSW, the NSW Cancer Plan 2007 - 2010,
news releases, and a variety of other information for patients, researchers
and health professionals.
They also run a website called CI-SCaT (Cancer Institute NSW Standard
Cancer Treatments) here
"Welcome to CI-SCaT ... One goal of the NSW Cancer Plan 2007-2010
is to ensure that clinical practice is evidence-based and research driven.
This site provides clinicians with chemotherapy cancer protocols, including
the evidence, cost, and drug dose calculation. In addition, patients
and their carers can find detailed information on their treatments and
its side-effects."
For anyone involved with cancer in Australia and looking for information
on the internet, whether you've been diagnosed with cancer, or are a
medical professional, a provider or a researcher, I suggest visiting
the Cancer Institute NSW website and browsing or searching for information
that may be helpful to you. Their site map page is at www.cancerinstitute.org.au/cancer_inst/sitemap.html.
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Info and support for young adults
(18 to about 40) with any kind of cancer in Australia
Two new organisations aiming to help young
adults with cancer and their supporters Australia-wide are the I'm
Too Young For This! Cancer Foundation and The Warwick Foundation.
They
are working to provide information and support that meets the needs and
addresses the problems of young adults with cancer, provide social networking,
and encourage the medical and related
professions and support services to recognise younger adults as an age group
with specific and unique needs. They are aiming to reach as many young adults with cancer as
possible. These are pretty awesome challenges as you can imagine,
and if you can help in any way they would welcome your input.
The I'm Too Young For This! Cancer Foundation
(based in the USA) runs a group on Facebook called i[2]y Down Under, created by Shari Falls, at
this address www.facebook.com/group.php?gid=8492024091,
for young adults age 18 to 40. They say:
"Sign up if you'd like to socially network with other young adults via
hip, non-clinical and non-threatening events like a bbq and beer, happy hours,
cocktail parties and road trips. Stupid Cancer!"
"The focus of i[2]y Down Under is to promote the awareness of young adults,
and to advocate on behalf of thier struggles, challenges, needs, desires
and goals."
There's more about the I'm Too Young
For This! Cancer Foundation further up this page here (you can use your back button to return to this point).
Shari has also started a i[2]y Down Under group on MySpace at http://groups.myspace.com/i2yDownUnder.
New entry 24th July 2008: i[2]y now has its own Australian social networking website called i2y Australia, at www.i2yaustralia.ning.com. If you're a young adult with cancer in Australia (or a supporter) this networking website is a must to check out - joining is simple and once you're in you'll have plenty of fellow young Australians to communicate with.
'In My Shoes' - The Warwick Foundation - is
a new non profit charitable organization in Australia focusing on supporting
young adults (18-40) years on their cancer journey. It was founded by Samantha
Lehmann who lost her 35 year old brother Warwick to cancer in 2005. "In
memory of my Brother who loved music, his friends, his family and his life,
I have set up The Warwick foundation, I believe together we can fight and
make a difference for young adults on their cancer journey".
The Foundation's website address is www.thewarwickfoundation.org.au,
and the Foundation also has a presence on Myspace at www.myspace.com/thewarwickfoundation
and Facebook at www.facebook.com/group.php?gid=2765515350.
Among other activities the Foundation is advocating for a new model of care
for adolescents and young adults with cancer, conducting fund-raising events,
and connecting young adults on the cancer journey through their 'Find a
mate in your shoes' program.
Nikki has started an Australian networking group on the Planet Cancer website called "Australian Network for Young Adults with cancer". It's address is www.myplanet.planetcancer.org/group/australiannetwork.
She says "Lets band together and push for better cancer support services in Australia for YOUNG ADULTS up to 40+ years!". She's particularly keen to hear from any young adults in Australia (and their supporters) who've been diagnosed with cancer, about their good and bad experiences of cancer treatment and support services, and their opinions as to how services for young adults can be improved. There's a forum on the group's webpages where you can post your experiences and opinions.
CanTeen is a national support organisation for young people aged
12-24 living with cancer. Here's a couple of quotes from their website:
"CanTeen has nine offices throughout the country, supporting thousands
of young people living with cancer. Each Division has an office, dedicated
(and very cool) staff, and a hugely important committee driven by CanTeen
Members. They each run their own programs and camps, sometimes coming together
to run joint activities and providing the opportunity for Members to broaden
their peer networks."
"Ranging from week-long summer camps
in picturesque locations around Australia for up to 100 CanTeen Members,
to locally-based programs focused on the specific needs of different groups
of young people living with cancer, CanTeen offers its Members a comprehensive
range of support options. Nothing reduces isolation like spending positive
time with someone else living in a similar situation."
You can find further details of their programs and other services they
offer at www.canteen.org.au.
Within their website they have established The Adolescent and Young Adult Cancer Group. They say "Adolescents and Young Adults (AYA) with cancer are the lost generation ... when it comes to research, treatment and support - not only in the Australia/New Zealand region but internationally. However, there is now growing momentum for change in the way we treat and support AYA with cancer. The AYACG is an informal interest group for people interested in receiving information and news relating to improving care for adolescents and young adults with cancer. Our primary focus is the Australia and New Zealand region, but all are welcome to join."
For more info or to join the group, look for a link to "AYACG site" on Canteen's home page.
The Peter MacCallum
Cancer Centre in Victoria has a program for adolescents and young adults with cancer,
called onTrac@PeterMac. Their website address is www.petermac.org/ontrac/. "Any young person undergoing cancer care in Victoria is eligible to access the services of the onTrac@PeterMac program". The age range of those eligible is currently 15 to 25 years.
They say: "In recognition of the unmet needs of adolescents and young adults (AYA)
with cancer, and as part of its commitment to advancing oncology services,
the Peter MacCallum Cancer Centre has pioneered an Australian-first
cancer service for AYA called onTrac@PeterMac. It aims to provide optimal
treatment, care and support for AYA with cancer and ultimately improve survival
rates."
There's further information about OnTrac@PeterMac in an i[2]y Down Under Facebook group discussion board thread here www.facebook.com/topic.php?uid=8492024091&topic=3873.
As mentioned elsewhere in this Australian websites section, in late May 2008 the Leukaemia Foundation launched a network for young adults called Revive with a website at www.teamrevive.org. They say "Currently, the Leukaemia Foundation is developing a program throughout Australia to provide education and support to young people and their friends and familes affected by blood cancer. It will focus on evidence-based research to ensure the highest quality of care is available for young adults." Revive is "... intended to be a portal for young people to access information, relevant contacts, share stories and network with each other".
Revive is in early stages of development and they are encouraging young adults and their families and friends to help define the direction of development. If you're a young adult with a blood cancer or a supporter please do explore the Revive website. There's a group of online forums where you can share information and support with fellow Aussies, and maybe contribute your own ideas to the development of Revive.
|
There's a valuable annotated
page of useful links relating to cancer on Denis Strangman’s website
'The Canberra One-Stop Cancer Web-Shop' "Dedicated to helping cancer
patients and carers in the ACT and NSW Southern Area health region locate
reliable web resources of interest to them." Its address is www.hotkey.net.au/~string/listing.htm
- scroll down the home page to find the list of links. Some of the links
it lists are to Australia-wide and international sites so it’s worth
a visit wherever you are in Australia.
"Look Good...Feel Better"
at www.lgfb.org.au.
"... a free community service program dedicated to helping women
undergoing treatment for cancer. The purpose of the program is to help
women manage the appearance related side effects of chemotherapy and radiotherapy,
thereby helping to restore their appearance and self image.
Look Good...Feel Better is an initiative of the member companies
of the Cosmetic, Toiletry and Fragrance Association of Australia, (CTFA)
who established the program in Australia in 1990. Since that time over
32,000 women living with cancer have been helped by the program."
Camp Quality's website at
www.campquality.org.au
: "Camp Quality is a non profit organisation that is committed to bringing
hope and happiness to every child living with cancer, their families
and communities through ongoing quality recreational, educational and
financial support programs." To register "You must be between the ages
of 0-18 years and have been diagnosed with cancer". ... "Camp Quality
is an international charity with the first office being established in
1983 in Sydney, Australia. There are 14 offices throughout Australia
covering every state and territory. Over 5,000 families each year are
supported by Camp Quality; they participate in our camps and other activities.
Nationally there will be approximately 185 camps and recreational activities
held in Australia in 2005."
Petrea King
on the Petrea King Quest for Life Centre and Quest for Life Foundation
website at www.questforlife.com.au says "Providing services
that assist people to reconnect with their spirit and establish peace
in their lives has been my passion since my recovery from leukaemia
in 1984. Together with a dedicated team of health professionals, we
have been providing services for people living with the challenges of
serious, chronic and life-threatening illness, grief, loss and trauma since
1985."
"The Quest for Life Centre was established in its own premises in
1998 in beautiful Bundanoon in the Southern Highlands of NSW, Australia."
Elsewhere on the website it says "The Quest for Life Foundation was
established in 1990 by Petrea King to further her work. Since her recovery
from leukaemia in 1984, Petrea has devoted her life to counselling people,
facilitating support groups, running residential programs and lecturing
widely on health and healing."
You can find details of the Foundation and Centre and their upcoming
programs on the website, and you can also listen to some of her past radio
interviews on the ABC.
The Gawler Foundation was
established as a non-profit organisation in 1983 by Dr Ian Gawler following
his recovery from bone cancer. "The Gawler Foundation is committed to
an integrated approach to health, healing and wellbeing that includes
the body, emotions, mind and spirit. We call this integrative medicine.
Our mission is to work within a integrative medical framework to provide
access to the best possible instruction and support for the implementation
of self-help techniques."
They run the Yarra Valley Living Centre near Melbourne and offer
both residential and non-residential programs. You can read about the
Foundation and what it has to offer on their website at www.gawler.org "
The Cancer Council NSW has
a good Recommended Reading List page on their website for books on cancer,
and some links to cancer-related websites too. “We're often asked to
recommend good books and websites about cancer. Here is our selection.”
The direct link to the page is www.cancercouncil.com.au/editorial.asp?pageid=721
Can Assist (Cancer Assistance
Network) formerly known as the Cancer Patients Assistance Society of
NSW "... helps cancer patients, predominately from rural NSW, by
providing accommodation, comfort, financial assistance and emotional support
for patients and their carers."
"For 50 years, Can Assist, the Cancer Assistance Network, has been
caring for NSW cancer patients and their families through a network of
volunteers and members in 37 Branches across rural and regional NSW. We
own and operate three patient care facilities - Jean Colvin Hospital,
which is a fully Accredited hospital and located in Darling Point - Sydney,
Ecclesbourne which is a bed and breakfast facility for patients and their
carers and Lilier Lodge which also caters for cancer patients and their carers
and is co-owned with the Cancer Council - located in Wagga Wagga. These
facilities are situated close to treating hospitals."
Their web address is www.cancerpatients.com.au.
The Australian website Virtual
Cancer Centre at www.virtualcancercentre.com has information about
cancers and their treatments, and about drugs used to treat cancers.
It's a resource primarily designed for health professionals, but if you
are a patient or supporter researching a cancer and its treatments you
may find useful information here. "Established in April 2002 virtualcancercentre.com
has been compiled by Australian medical professionals and industry to
be a comprehensive online cancer information, news and education knowledge
hub ...". The website is part of a larger enterprise Virtual Medical
Centre at www.virtualmedicalcentre.com.
More suggestions please
If you know of any other good testicular cancer websites large or small,
or active forums (message or discussion boards) or mailing lists on testicular
cancer you would like to see added to this page, or you find any errors
or broken links, please send me an email at
everest@bestcancersites.com.
Ed Everest, Adelaide, Australia
This page modified 22nd September 2007
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