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 ESOPHAGEAL CANCER WEBSITES

The address of this page is www.bestcancersites.com/esophageal/























































A guide to the best and most popular English-language esophageal 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 websites I could find around the world for esophageal 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.

For information about symptoms, diagnosis and treatments for esophageal cancer I recommend you go to the following sources.

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 esophageal 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 "Esophagus Cancer" and then click on Go.

They run a forum called "Esophageal Cancer - look for a link to "Discussion Boards" on their Cancer Survivors Network index page who's address as at 29th March 2011 is http://csn.cancer.org.

They have many other resources too for those involved with cancer so it's well worth exploring their site for additional information and support that may be relevant to your situation.

The website (called Oncolink) of the Abramson Cancer Center of the University of Pennsylvania is another good source of information on esophageal cancer and its treatments - you can go to this direct link www.oncolink.com/types/article.cfm?c=5&s=12&ss=769&id=9465 .

Another valuable source of information is the website of the USA Government's National Cancer Institute at www.cancer.gov . To locate the section on esophageal cancer, click on this link www.nci.nih.gov/cancertopics/types/esophageal/. 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 Esophageal Cancer in the alphabetical list.

Cathy's EC Café was an excellent volunteer-run website devoted to esophageal cancer. Its address was http://www.eccafe.org. I say "was" because tragically the creator or co-creator and webmaster of eccafe.org Marc W. Wolfgram died as a result of a traffic accident in February 2010 and the site was not maintained and the domain registration lapsed and so the site disappeared from the internet. There is an obituary for Marc here www.legacy.com/obituaries/jsonline/obituary.aspx?n=Marc-Wolfgram&pid=139808558 . Marc was a long-time survivor of esophageal cancer.

A central feature of Cathy's EC Café was and still is a mailing list called the EC-Group, hosted by the Association of Cancer Online Resources (ACOR), where people involved with esophageal cancer can share information and support through communal emailing. You can find the mailing list by visiting the home page of ACOR at www.acor.org and clicking on the 'Mailing List' link, or by going to this direct link http://listserv.acor.org/archives/ec-group.html. When I checked on 29th February 2012 this mailing list had 1903 subscribers.

Recently a copy of the Cathy's EC Café website has been located on the internet by "Lucie", who posted in the EC-Group mailing list "Here is the site as of July 1, 2011, the last time it was "crawled". http://web.archive.org/web/20110701110525/http://www.eccafe.org. All the in-site links seem to work." There are moves afoot to reinstate the website, under another domain name as eccafe.org is no longer available. If this happens it will doubtless be announced in the EC-Group mailing list and I will post the new address here.

Meanwhile if you go to http://web.archive.org/web/20110701110525/http://www.eccafe.org you can explore the site as it was on July 1st 2011. When you go to the home page, find and click on the link 'Contents' to see what the website offers - much of the site content has no direct link to it from the home page.

And if you would like to find out how a copy of this website was still on the net where Lucie found it, check out the WayBackMachine internet archive at http://web.archive.org. Maybe like me you didn't know such an archive existed :)

In the first decade of the 21st century Cathy's EC Café was one of the best known cancer information and support sites run by a cancer survivor on the internet, and no doubt the site encouraged other survivors to undertake similar ventures for other cancer types. We owe a substantial debt of gratitude to Marc and his partner Tammara.

If you have an involvement with Barrett's Esophagus then I recommend visiting the Johns Hopkins Barrett's Esophagus website at http://pathology2.jhu.edu/beweb where you will find plenty of information about this condition and its treatment.

What is Barrett's Esophagus? "Long-term irritation can increase the risk of esophageal cancer. Tissues at the bottom of the esophagus can become irritated if stomach acid frequently "backs up" into the esophagus -- a problem called gastric reflux. Over time, cells in the irritated part of the esophagus may change and begin to resemble the cells that line the stomach. This condition, known as Barrett's esophagus, is a premalignant condition that may develop into adenocarcinoma of the esophagus" - a quote from the National Cancer Institute website.

If you are looking for an active forum (message or discussion board) on esophageal cancer I suggest going to the forum on the American Cancer Society website called "Esophageal Cancer" I mentioned above - look for a link to "Discussion Boards" on their Cancer Survivors Network index page who's address as at 7th June 2011 is http://csn.cancer.org. And the forum on the Johns Hopkins Barrett's Esophagus website. The direct link to it is http://pathology.jhu.edu/beweb_chat.

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 esophageal cancer can be found by going to this webpage www.nccn.org/professionals/physician_gls/default.asp.

If you want to delve deeper into any aspect of esophageal 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 esophageal cancer is www.nlm.nih.gov/medlineplus/esophagealcancer.html.

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.

Ed Everest, Adelaide, Australia.

Page updated 1st December September 2010

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Australian Esophageal Cancer Websites

There do not appear to be any websites based in Australia devoted to esophageal cancer.


Other 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/about-us/state-and-territory-councils/. If you are looking for a cancer support group in your area you may be able to locate one by searching on your state or territory Cancer Council website.

The Cancer Council New South Wales runs a large website at www.cancercouncil.com.au and it's well worth checking out whether or not you live in NSW.

Cancer Connections at www.cancerconnections.com.au is an online community created by Cancer Council New South Wales offering support and information to all Australians affected by cancer.

A feature of the site is their forums (discussion boards) where members can share support and exchange information and experiences. As well as general forums for Australians affected by cancer there are forums specifically dedicated to young adults, survivors, and partners, family & friends.

They've recently launched a Young Adults section of the website which includes "news about upcoming events for young adults with cancer and links to our In Focus topics designed specially for young adults, covering issues like sexuality, nutrition, complementary therapies and treatment side effects".

The website's Resources page details some of the services and resources offered by Cancer Council New South Wales including a confidential support and information service helpline you can access by telephone or email.

The Cancer Institute (NSW) was established in 2003 by an act of parliament called The Cancer Institute (NSW) Act 2003. Some of its objectives as stated in the Act are "to reduce the incidence of cancer in the community ... to improve the quality of life of cancer patients and their carers ... to operate as a source of expertise on cancer control for the government, health service providers, medical researchers and the general community".

For anyone involved with cancer in Australia and looking for information on the internet, whether you've been diagnosed with cancer, or are a medical professional, a provider or a researcher, I suggest visiting the Cancer Institute NSW website and browsing or searching for information that may be helpful to you. Their website is at www.cancerinstitute.org.au and their site map page is at www.cancerinstitute.org.au/cancer_inst/sitemap.html.

They say "The Cancer Institute NSW is Australia's first statewide, government supported cancer control agency." They have developed a Cancer Services Directory which "aims to bring together information on treatment, services and support for patients and their carers". It includes the following publications:
- an online listing of cancer treatment centres in NSW;
- "A-Z Directory of Support Groups 2005 (4.9mb PDF): A list of support groups operating in suburbs, towns and cities throughout New South Wales and the services they offer";
- "Accomodation Guide 2005 (636kb PDF): A directory of accommodation providers near to all the major cancer treatment centres in New South Wales";
- "A-Z Directory of Cancer Publications 2005: Lists over 200 cancer publications, a summary of each brochure's contents and details of how to obtain them."

There are some other publications including The Cancer Prevention Plan ("This booklet provides simple guidelines to help reduce your risk of cancer"), cancer statistics for NSW, the NSW Cancer Plan 2011–15, news releases, and a variety of other information for patients, researchers and health professionals.

They have also developed a website called eviQ Cancer Treatments Online (formerly known as CI-SCaT) here. "eviQ Cancer Treatments Online is a point of care clinical information resource that provides health professionals with current evidence based, peer maintained, best practice cancer treatment protocols and information. eviQ is relevant to the Australian clinical environment and can be accessed free 24 hours a day. eviQ is designed to support a busy work flow in all clinical and geographical settings, allowing rural, remote and metropolitan health professionals, patients, carers and their families access to the same standard evidence based information at all time."

Cancer Australia "is the Australian Government's national cancer agency. We are working to improve outcomes for people affected by cancer, by ensuring that national cancer control, prevention, treatment and care are evidence-based."

"Our role is to provide national leadership in cancer control, and we are doing this by developing partnerships and productive working relationships with other cancer-related organisations, strengthening consumer participation in cancer control, building cancer research capacity, enhancing the education of cancer health professionals, improving access to cancer services and improving cancer data."

Cancer Australia was established by the Australian Government in 2006. You can explore their website at www.canceraustralia.gov.au to see how far they've come and whether they have information relevant to your situation.

The Victorian Government's Better Health Channel website at www.betterhealth.vic.gov.au/ is well-worth exploring for its information on cancers and related issues and links to Australian resources and support. They say "The Better Health Channel (BHC) provides health and medical information that is quality assured, reliable, up to date, easy to understand, regularly reviewed and locally relevant. BHC does not have any advertising or sponsorship and is fully funded by the State Government of Victoria (Australia)."


Info and support for young adults (18 to about 40) with any kind of cancer in Australia

As mentioned above, Cancer Connections at www.cancerconnections.com.au is an online community created by Cancer Council New South Wales offering support and information to all Australians affected by cancer.

They've launched a Young Adults section of the website which includes a forum for young adults, and "news about upcoming events for young adults with cancer and links to our In Focus topics designed specially for young adults, covering issues like sexuality, nutrition, complementary therapies and treatment side effects".

'In My Shoes' - The Warwick Foundation - is a 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 Facebook at www.facebook.com/thewarwickfoundation. 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". Its 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."

Canteen runs a website called “Now What –your space for taking on cancer” at www.nowwhat.org.au, for young Australians 15 to 24 years old. There you can find many stories of personal cancer journeys, some forums, and age-relevant cancer-related information.

You can find further details of their programs and other services they offer at www.canteen.org.au.

The Peter MacCallum Cancer Centre in Victoria has a program for adolescents and young adults with cancer, called onTrac@PeterMac. Their website address is www1.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."



The Peter MacCallum Cancer Centre in Melbourne

The Peter MacCallum Cancer Centre in Melbourne is the only freestanding public hospital in Australia devoted solely to the care and treatment of cancer patients.

Their website at www.petermac.org has information on their patient care programs for different types of cancer, as well as information on their history, research programs, education programs, nursing services and training, the Peter Mac Foundation, their chemotherapy day unit, medical staff and careers, and various other features that go to make up a standalone cancer centre.

As I am not familiar with the Centre and its services I will quote some relevant info from their website.

"The Peter MacCallum Cancer Centre holds a unique place in the Australian public health system. It is the only hospital solely dedicated to cancer and one of a few outside the US that has its own integrated cancer research programs and laboratories."

"Peter Mac’s main campus is situated in East Melbourne with satellite centres at Bendigo, Box Hill, Moorabbin and the Tattersalls Cancer Centre at Epworth in partnership with Peter Mac."

"The Institute has 151 registered beds, and each year cares for 9,000 inpatients as well as providing more than 200,000 occasions of outpatient care. Peter Mac now has large academic Divisions of Research, Radiation Oncology, Haematology, and Medical Oncology, and an evolving Division of Surgical Oncology."

"It took the concerted efforts of people such as Professor Sir Peter MacCallum and Dr Rutherford Kaye-Scott, to convince the Victorian Government to establish a Cancer Institute in March 1949. The Board met for the first time on 27 April that year and began work on a budget of 3,000 pounds in one room of the former Queen Victoria Hospital in William Street, Melbourne."

"By 1950, an outpatient clinic had been established and named in honour of Professor MacCallum, who had been a tireless advocate and driving force for a centralised cancer institute for Victoria."

In 1986 the name was changed to Peter MacCallum Cancer Institute -'The Peter Mac'. "

"Approval was given in 1990 to move Peter Mac to the site of the former St Andrew's Hospital in East Melbourne, Building of the new clinical block commenced in 1991 and, at the same time, substantial renovations and alterations to the existing buildings were undertaken."

A feature of the Peter Mac hospital is the Peter Mac Patient Information & Support Centre where patients and their loved ones and supporters can find information in a variety of formats about cancers and about support services in Victoria.

"The Patient Information and Support Centre is a quiet, comfortable area where information about cancer and its treatment is available. There is information about support services that may assist you, your family and friends during this difficult time."

"The Cancer Support Nurse or a Volunteer can help you to find reliable, up-to-date and relevant information about cancer, its treatment and related support services."

"The Cancer Support Nurse is available to talk with you, to help answer your questions and can help you find other support relevant to your needs. Please drop into the Centre if you would like assistance; you are also welcome to browse". You can also phone or email if you have any concerns or questions or you would like make an appointment to spend more time with the Cancer Support Nurse.

Available information includes fact sheets, booklets, brochures, dvds, videos, and reliable website information, and there is internet access, a calendar of activities, information sessions, information available in other languages, and an on-line database of Victorian services.

Look for the link to "Patient Information and Support Centre" on the home page of the Peter Mac website for more information about the centre, including its location and hours of opening. If you are attending the hospital as a patient or supporter I do encourage you to visit the information and support centre to see what it has to offer.

Patient Information and Support Centre

The Patient Information and Support Centre. Photo courtesy of Cancer Support Nurse Nicole Kinnane.

The Peter MacCallum Cancer Centre runs a program unique in Australia for adolescents and young adults with cancer, called onTrac@PeterMac - the Victorian Adolescent & Young Adult Cancer Service. The program website address is www1.petermac.org/ontrac/

They say: "onTrac@PeterMac ... offers specialised, age appropriate care to Adolescent and Young Adult (AYA) cancer patients treated within adult hospitals. The team includes a medical & paediatric oncologist, clinical nurse consultant, psychiatrist, psychologist, social worker, palliative care CNS, education advisor, music therapist, education & training officer and research officer. The service provides:
* clinical care and support ... young people undergoing cancer treatment
* secondary consultation service to healthcare professionals, young people and the broader community
* training, education & professional development program
* medical & psychosocial translational research
* AYA resources"

"Located at Peter MacCallum Cancer Centre, East Melbourne, the onTrac@PeterMac team travel throughout Victoria, to ensure all young people have access to specialist support and advice if required".

"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.

You can find more information about the onTrac@PeterMac program on their website and there's also a variety of information on the website for both patients and health professionals.

About the patient section of their website they say in part:
"This section of the onTrac@PeterMac web site has been specifically designed for Adolescent and Young Adult (AYA) cancer patients. It covers a range of questions that you may want answered and also some other information that we thought you may find useful in answering questions related to a cancer diagnosis and its treatments".

About the health professionals section they say in part:

"The Health Professionals section of the web site has been designed specifically to assist Health professionals who work with or have an interest in adolescent and young adult cancer care. The information that can be found in this website has come from the knowledge and experience gained from healthcare professionals working in the field".

Lymphedema If you have an involvement with lymphedema you may find the website of the Australasian Lymphology Association a valuable resource. It includes "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}. The web address is www.lymphoedema.org.au.

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.

Can Assist (Cancer Assistance Network) formerly known as the Cancer Patients Assistance Society of NSW "... helps cancer patients, predominately from rural NSW, by providing accommodation, comfort, financial assistance and emotional support for patients and their carers."
"For 50 years, Can Assist, the Cancer Assistance Network, has been caring for NSW cancer patients and their families through a network of volunteers and members in 37 Branches across rural and regional NSW. We own and operate three patient care facilities - Jean Colvin Hospital, which is a fully Accredited hospital and located in Darling Point - Sydney, Ecclesbourne which is a bed and breakfast facility for patients and their carers and Lilier Lodge which also caters for cancer patients and their carers and is co-owned with the Cancer Council - located in Wagga Wagga. These facilities are situated close to treating hospitals."
Their web address is www.cancerpatients.com.au.

The Australian website Virtual Cancer Centre at www.virtualcancercentre.com has information about cancers and their treatments, and about drugs used to treat cancers. It's a resource primarily designed for health professionals, but if you are a patient or supporter researching a cancer and its treatments you may find useful information here. "Established in April 2002 virtualcancercentre.com has been compiled by Australian medical professionals and industry to be a comprehensive online cancer information, news and education knowledge hub ...". The website is part of a larger commercial enterprise Virtual Medical Centre atm www.virtualmedicalcentre.com.

South Australia in brief (my home state)

Cancer Council SA www.cancersa.org.au

Among their services they run a shop at Shop 11, Regent Arcade, Adelaide SA 5000 (Regent Arcade is a walk-through arcade "running" from Rundle Mall to Grenfell Street).

The Cancer Care Centre Incorporated, 76 Edmund Avenue, Unley, South Australia 5061, website address www.cancercarecentre.org.au.

Here's a couple of quotes from their website to give you a flavour of their approach and the services they offer.

"The Cancer Care Centre Incorporated is an innovative, non-profit organisation providing complementary health care support to people affected by cancer - including patients, carers and families. It is the largest complementary health care organisation in South Australia dedicated to cancer. In 2010 an estimated 6,000 individual services will be delivered to people affected by cancer."

"We offer cancer patients, carers and family members a variety of courses, support groups, seminars, counselling, complementary therapies and resources designed to empower the individual to actively involve themselves in the healing process."

More suggestions please

If you know of any other good esophageal cancer websites large or small, or active forums (message or discussion boards) or mailing lists on esophageal 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 updated 1st December 2010

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