Ed Everest's Guide to many of the World's Best Cancer Websites in the English language
The address of the home page is www.bestcancersites.com

A Few Rare Cancer Websites
The address of this page is www.bestcancersites.com/rare/

For the present I will simply list those websites and support groups that come to my attention, as time constraints have prevented me from searching for sources of information and support specific to rare cancers.

NORD - the National Organisation for Rare Disorders - has a database of rare disorders on their website 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.

If you are involved with a website or support group for a particular rare cancer and it's not listed in the NORD database, you may be able to get it listed there. I was not able to find a form on their website specifically for that purpose - if you can't find one perhaps simply send them an email at the general contact address they give with details of your website or organisation or group.

The website of the National Cancer Institute (USA) at www.cancer.gov has authoritative and easy to read and understand information on numerous types of cancer. If you go to their home page and click on the link "A to Z List of Cancers" (under the heading "All Cancer Types") you may find the cancer type you are looking for in the alphabetical list. You could also try putting the name of the cancer into the search window on the home page. That may find some information about the rare cancer in documents on more common cancers.

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 most forms of cancer, there's a wealth of information on cancer and cancer-related matters, and some forums or discussion boards and chat rooms.

To find their information on any specific type of cancer, near the top of their home page, click on the link "Learn About Cancer", then on the new page that displays, search the alphabetical list under the heading "Select a Cancer Type" to see if they have a section on the cancer you are searching for, and if you find it, click on it and then click on Go. If you don't find it, try searching the site using their search facility.

They run a group of forums - look for a link to "Discussion Boards" on their Cancer Survivors Network index page who's address as at 24th January 2013 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.

Facebook at www.facebook.com is a good place to find rare cancer websites and support groups - put the name of the cancer you are involved with into the Facebook search window and see what you can find. Also try the words tumor and tumour in place of cancer.

A good source of information about cancers and related matters 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 there's an index to contents on that page where you may find topics relevant to your search.

Here's some background from their home page:
Medlineplus - “A service of the U.S. National Library of Medicine and the National Institute of Health”

“Welcome to MedlinePlus, a goldmine of good health information from the world's largest medical library, the National Library of Medicine. Health professionals and consumers alike can depend on it for information that is authoritative and up to date. MedlinePlus has extensive information from the National Institutes of Health and other trusted sources on over 650 diseases and conditions. There are also lists of hospitals and physicians, a medical encyclopedia and a medical dictionary, health information in Spanish, extensive information on prescription and nonprescription drugs, health information from the media, and links to thousands of clinical trials."

The Rare Cancer Alliance website at www.rare-cancer.org provides information about some rare cancers and has some on-site forums and Yahoo email support groups. For some reason they don't give links to rare cancer websites or to rare cancer support groups other than their own.

Acoustic Neuroma
The Acoustic Neuroma Association has a website at www.anausa.org, with plenty of information, and support options including support groups and an active forum.

Adenoid Cystic Carcinoma
The Adenoid Cystic Carcinoma Organization International is an all-volunteer organisation with a website at www.accoi.org and a Facebook presence at www.facebook.com/accoi. They say "Adenoid cystic carcinoma ("ACC") is a rare cancer that usually occurs in areas of the head and neck but can occur in other parts of the body as well. Both children and adults may develop ACC, although it occurs more often in adults over age 40."
"This website provides information about treatment, research, clinical trials, organizations offering help with medical expenses, and more."
"We maintain a free email Information Group where ACC patients and caregivers share all types of information about ACC in an atmosphere of support."
When I checked on 26th January 2013 there were 1296 members in the group. The direct link to the group is http://health.groups.yahoo.com/group/Adenoid_Cystic_Carcinoma_Organization/

Adrenal Cortical Cancer

Adrenal Cortical Cancer, also known as adrenocortical carcinoma, adrenal cancer and cancer of the adrenal cortex, starts in the cortex of the adrenal glands which sit at the top of the kidneys. The American Cancer Society website says "Adrenal cancer is very rare. The exact number found in the United States is not certain. It is probably about 300 cases per year. The average age of those found with adrenal cancer is around 45 to 50, but it can happen at any age, even in children. It seems to occur more often in women."

You can read about adrenal cortical cancer and its treatment on the American Cancer Society website in their section "Adrenal Cortical Cancer" at www.cancer.org/cancer/adrenalcorticalcancer/index and on the USA's National Cancer Institute's website in their section "Adrenocortical Carcinoma" at www.cancer.gov/cancertopics/types/adrenocortical.

Here are two information and support groups on the internet for those with Adrenal Cortical Cancer and their supporters and providers.

The Yahoo group "ACCompassion" at http://health.groups.yahoo.com/group/ACCompassion/. "This group was formed to create a forum to offer emotional and spiritual support to victims of ACC and their loved ones". There were 418 members when I checked on 3rd August 2011 and the group was receiving over a hundred posts a month.

The Facebook group "Adrenalcortical Carcinoma - Adrenal Cancer" at www.facebook.com/groups/AdrenalcorticalCarcinoma/ with 892 members when I checked on 5th August 2011.

Amyloidosis

Amyloidosis is an uncommon condition in which amyloid protein fibrils build up in one or more organs in the body, and it can occur in association with multiple myeloma. There are a few websites set up by survivors and supporters around the world that provide information and support for those involved with amyloidosis and give contact details for support groups.

In Australia the Reid family has formed Amyloidosis Australia Inc, a registered charity, and they have created an excellent website at www.amyloidosisaustralia.org. As well as providing plenty of information, they have a very good links page. I won't repeat the links they give - rather I recommend you visit their website, and use their links page to find the other amyloidosis and related websites on the net.

Chordoma
Chordoma is a rare cancer that can occur almost anywhere along the spinal cord. You can read a brief description on the National Organisation for Rare Disorders website www.rarediseases.org  on this webpage
www.rarediseases.org/search/rdbdetail_abstract.html?disname=Chordoma

There is an excellent online support group called the Chordoma Support Group at www.chordomasupport.org - "We are an online community using a message board and email to communicate with each other around the world. ... This is a peer group, for patients, family and friends, to offer support, friendship and understanding and shared experience. There are links posted to relevant on-line information, by qualified people and from reputable sources ... . There are more than 100 registered members as of May 2009. Some are patients, some are relatives and friends of patients. ... Our group also includes people with other types of skullbase tumours."

Dermatofibrosarcoma Protuberans (DFSP)
There are two active support groups for those involved with DFSP on Facebook: "DFSP - DERMATOFIBROSARCOMA PROTUBERANS" at www.facebook.com/home.php?sk=group_91657360264&ap=1, created by Pip Motson Çaliskan, and "Dermatofibrosarcoma Protuberans" at www.facebook.com/home.php?sk=group_26592523481, created by Teresa Griffith.

There is an article on the website www.emedicine.com called Dermatofibrosarcoma Protuberans (the article was last updated on November 28th 2012) on this web page www.emedicine.com/derm/TOPIC97.HTM. It's a scientific article but it's easy to read, and gives what looks to me like quite a good introduction to Dermatofibrosarcoma Protuberans.

The National Comprehensive Cancer Network has published a set of "NCCN Clinical Practice Guidelines in Oncology" on their website at www.nccn.org and there's one for dermatofibrosarcoma protuberans and one for soft tissue sarcomas. Look for a link to "NCCN Guidelines to Treatment of Cancer by Site". You'll probably need to register on their site to see the guidelines.

Here's some blurb about the NCCN on their site. "The National Comprehensive Cancer Network® (NCCN®), a not-for-profit alliance of 23 of the world's leading cancer centers, is dedicated to improving the quality and effectiveness of care provided to patients with cancer. Through the leadership and expertise of clinical professionals at NCCN Member Institutions, NCCN develops resources that present valuable information to the numerous stakeholders in the health care delivery system. As the arbiter of high-quality cancer care, NCCN promotes the importance of continuous quality improvement and recognizes the significance of creating clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers. The primary goal of all NCCN initiatives is to improve the quality, effectiveness, and efficiency of oncology practice so patients can live better lives."

GASTROINTESTINAL STROMAL TUMORS (GIST)
Go here www.bestcancersites.com/GIST for some good internet resources.


Hereditary Diffuse Gastric Cancer

The organisation No Stomach For Cancer, Inc says on their website at www.nostomachforcancer.org (also on Facebook at www.facebook.com/pages/No-Stomach-For-Cancer-Inc/171911346631) "An estimated 1-3% of cases of gastric cancer are caused by Hereditary Diffuse Gastric Cancer.... Hereditary diffuse gastric cancer (HDGC) is an inherited cancer syndrome that leads to an increased risk for both diffuse gastric cancer and lobular breast cancer. Patients who inherit the genetic mutation for HDGC are at high risk for developing gastric cancer at a young age".

"No Stomach For Cancer, Inc. is an approved 501(c)(3) nonprofit organization under the Internal Revenue Code whose mission is to expedite education and research for early diagnosis, screening, treatment and prevention of Hereditary Diffuse Gastric Cancer (HDGC) and other diffuse gastric cancers and their related health risks, and to provide a network of support for affected families."

On the website you can find a discussion forum, family stories, information on many aspects of hereditary diffuse gastric cancer and links to additional information, and more.

Karen E. Chelcun Schreiber is the President of No Stomach For Cancer, Inc. She says: "I am living a full life without my stomach, and I have the chance to live a long life because I learned about my family’s genetic stomach cancer in time. ... "

"Families affected by stomach cancer need reliable and relevant sources of information, as well as a network of support. Knowledge gives you power, and sharing gives you strength – I know this to be true."

"For all of these reasons, and so many more, the establishment and building of No Stomach For Cancer has become my passion…building an organization that will support and fund this very important and much needed effort…for as long as it takes".


A website called "Merkel Cell Carcinoma  Information for Patients & Their Physicians" at www.merkelcell.org provides good basic information about MCC, and its diagnosis, staging, prognosis and treatment, and gives links to news and research articles. It's been prepared by cancer experts and is published under the name of the Seattle Cancer Care Alliance (a large cancer center in the USA). 

They say "MCC, sometimes referred to as a neuroendocrine carcinoma of the skin, arises from the uncontrolled growth of Merkel cells in the skin. It is a rare skin cancer with roughly 1000 cases per year in the United States, making it about 40 times less common than melanoma."
"We have assembled this information to answer frequently asked questions about Merkel cell carcinoma (MCC). Since MCC is a rare malignancy, few patients are familiar with the disease and few doctors are familiar with its treatment. Easy access to understandable information is often difficult to obtain. In this resource, we have combined our review of the best available literature and our experience caring for over 60 patients with MCC ... since 2000."

Primary peritoneal cancer
Go here http://bestcancersites.com/ovarian/#Primary for links to sources of primary peritoneal cancer information and support on the internet.


Retinoblastoma
"The Childhood Eye Cancer Trust (CHECT) is a UK wide charity for families and individuals affected by retinoblastoma. We offer support and information, fund research and raise public awareness of this rare cancer." Their website is at www.chect.org.uk. Also I suggest searching Facebook.


Sarcomas
The Liddy Shriver Sarcoma Initiative at www.sarcomahelp.org.

Vaginal Cancer
EyesOnThePrize at www.eyesontheprize.org is a website run by a support group for those involved with gynecologic cancers including vaginal cancer.

They say "Welcome to our online support group for gynecologic cancer survivors! Women with cervical, uterine (endometrial and sarcoma), ovarian, vaginal, vulvar, gestational, and tubal cancer join together to share information and emotional support for living with reproductive cancers."

The site includes some information in the form of an FAQ, a mailing list, and a good list of links to other sites.

Vulva Cancer
See my vulva cancer page www.bestcancersites.com/vulvar/.

OTHER INTERNET RESOURCES

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. And for those who are okay with reading through lots of posts on forums, you may find threads on fatigue with valuable tips from people who are also doing battle with this unwelcome side-effect of cancer and its treatments. The usual provisos apply about forums, such as what works for one person may not work for another, and what doesn't work for one person may work for another.

The following article is the best general summarising article on cancer-related fatigue I've read. If you or someone you may be in a position to assist has issues with cancer-related fatigue, can I suggest quietly reading it through for a summary of what the latest thinking is. You may find information or ideas that are relevant to your situation. The source of the article is the website of the National Cancer Institute (National means USA here) - a USA government organisation and one of the world's best all-cancers websites. The article as at 21st August 2016 is here. If that link breaks as it inevitably will as changes are made to the overall structure of their website, putting fatigue into their search window on the home page should find it. Their home page address is http://www.cancer.gov

Here is another article on fatigue where you may find useful information or ideas for your situation: http://www.breastcancer.org/treatment/side_effects/fatigue or put fatigue into the search window on their home page http://www.breastcancer.org

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. Suggestions: If you're looking for information or support relating to a particular cancer, try putting the name of the cancer into their search window and see what it finds. If there are alternative spellings for what you're seeking, try each one. Eg tumor and tumour.

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!

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.

Page updated 2nd January 2011

everest@bestcancersites.com

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