Support Groups on (and off) the Internet
Support on the Internet
The net has made possible a revolution in support for cancer (and everything else). Internet support groups can be incredibly potent sources of both emotional support and information. Finding a good online support group may turn out to be the most important thing you do for yourself in your battle with cancer.
Although I have put this article in the Mind and Attitude Section, it could just as well be in my Researching Your Options section. I co-manage an e-mail discussion on kidney cancer, and despite years of experience with kidney cancer, my e-mail list is very often where I get my earliest information on new developments as well as insights I wouldn’t have thought of myself.
Face To Face Support
In addition to the advantages of real contact with real people, face to face support groups offer the possibility of getting inside information about the best local doctors, hospitals, and alternative practitioners and even local sources of practical help. Local support groups may also feature speakers and activities.
Finding a group for your specific kind of cancer is possible for a few of the more common cancers particularly, breast and prostate cancers, but is otherwise more difficult than on-line, and many face-to-face groups aren't specific to any one cancer. Some national patient groups for specific cancers may have chapters especially in major cities.
Most hospitals run support groups, and you may want to check more than one, even if they aren't at your hospital. Your city may also be home to specialized support organizations often called Wellness Communities.
Online support groups have some unique advantages:
- The MegaBrain Concept: Unlike face to face support groups, online support groups can have hundreds or even thousands of members. The ability to tap into so many minds at once is a huge advantage, because when you have that many people, someone has been just where you are or knows the answer to your particular question, or has a unique idea for you. Truly, 1000 heads are better than one!
- Support for Your Specific Situation: With a few exceptions, it’s hard to find a face to face support group for your specific type of cancer, or situation, but there are specific online support groups for nearly every kind of cancer.
- Specific Support for Rare Cancers: Even for rare and unusual cancers there may be active support groups with hundreds of members. With a rare cancer, the collective wisdom of such a group is truly unprecedented, and rare cancer groups can have enormous positive influence on research and treatment for their disease.
- They are Available 24/7/365: You can post a message to one of these groups anytime the Internet is up and running, and that’s anytime. Often you’ll get responses in minutes to hours.
- You Don’t Have to Travel to Participate:, a great advantage if you live in a remote area far from face to face support groups, or if you find it hard to get out.
They also have a few special disadvantages:
- SPAM, SPAM, SPAM and SPAM (Baked beans are off). When anyone can post without restrictions, marketeers selling the latest cancer cure, or even porn are sure to be found. Internet support forums vary tremendously in how well SPAM is controlled. Some do an excellent job, while others have no way to control spammers.
- Online forums can be plagued with “Flame Wars”, discussions which create lots of heat but no light. Again, some forums are well managed and keep this to a minimum. Some are dominated by a few crackpots with an axe to grind.
- You never know who’ll read what you write. In most online support groups the majority of members never post. This is called lurking. This is actually as likely to be a blessing as it is to a problem, you never know if someone who knows something important will respond to your message seemingly out of the blue. It happens. Also, unlike real support groups it’s much harder to be sure that people are who they say they are even if they do post.
- High Volume: Many forums are so active that it can be very hard to keep up with all of postings. Viewing discussions by topic, if the forum allows, or filtering email into a special folder can help.
Types of On-Line Support Groups
There are several different kinds of online support groups, and the different technologies greatly influence the character of groups. Many members of my kidney cancer E-Mail list call it a “site” or a “board” but actually it’s neither. It helps to be able to distinguish between the different kinds of forums available on the net.
Mailing lists are subscription groups for communication by e-mail. When one member of a mailing list sends a message to a special e-mail address called the list address, the message is automatically distributed to all other members of that list by a program called the listserver. When one member writes “the list”, every other member gets the message.
To be on a list, you have to send a subscription message to the listserver at special address reserved for this purpose. You can probably also register through a web form. Once you’re subscribed, you’ll begin receiving e-mails from the list. Be prepared for a lot of mail!
To leave a list you have to sign-off or “unsubscribe”. When you sign up the listserver will send you an e-mail with instructions on how to sign-off. Be sure to save it so you know how to get off the list when you need to!
In my experience, e-mail lists are the single most effective form of online support if they are well run (I may be biased because I put a lot of energy into co-managing the KIDNEY-ONC E-Mail List.). Good lists tend to attract a core of long term members who form a cohesive and powerful community. Information sharing on these lists can be amazing, including list members sharing information on the latest developments even before they have ever been presented formally, backed with a great reservoir of knowledge and support. List, if well managed, are also almost free of SPAM and flame-wars.
There is at least one mailing list for every common type of cancer and also quite a few rare ones. New cancer mailing lists are being started all the time, so if there isn’t a list for your kind of cancer right now, check back from time to time. There are a number of independently run lists and there are also organizations which host many lists. You may find several lists for your type of cancer in various places – you may want to subscribe to more than one and see what you like. In general, for any of the common types of cancer a good mailing list should be very active (dozens of e-mails a day) and should have at least 100 members.
Overall, ACOR, the Association of Cancer On- Line Resources hosts the largest and best managed collection of cancer mailing lists on the net. My KIDNEY-ONC E-Mail List is an ACOR list. ACOR has e-mail lists for most cancers, including some rare ones, as well as many other lists addressing cancer related topics, from science to caregiving to financal issues.
Yahoo Groups and MSN Groups make it easy for anyone to start a list. Most of these lists are inactive or badly managed, or even run by crackpots. Also, these services host so many lists it can be hard to find what you need (if it exists). Despite this there are some real gems hidden among the debris. You’ll need to use the search function or navigate by categories. These services also insert a little advertising into list messages. Both services have an impressive array of features for each group which go beyond a simple mailing list, including a group web page, and an archive which can easily be viewed (and looks like a message board), sometimes without joining. This actually blurs the distinction between mailing lists and bulletin boards. You may find you have better access to features like the archive if you get a free Yahoo Accout for Yahoo groups, or a Microsoft “.NET Passport” for MSN groups
There are other lists scattered around the net, and some are active and excellent. You might find that an organization devoted to your cancer hosts an e-mail list or points you to one. This should be on the group’s website.
Another way to find some of these scattered lists is through OncoLink. OncoLink has a list of related E-Mail lists for each kind of cancer. This includes most of the ACOR lists, but some selected good non-ACOR lists as well. As of October 2004, the list of support groups for each cancer type also includes several general cancer support lists. These lists, while possibly useful, are not specific to your type of cancer. You’ll be able to tell what they are by the names. Unfortunately, it isn’t possible to tell which of the lists are ACOR lists, so I recommend checking ACOR first so you’ll know. To find OncoLink’s list of E-Mail lists for your cancer, navigate to your cancer type, and then click on the “support” link on the left sidebar. You will then find a link for “ListServs” which will bring you to their information.
A Few Mailing List Tips
- Filter Your List E-Mail: Most all e-mail progams allow you to set up filters or rules to automatically place email from a given address into a folder of your choice. Doing this will keep your main Inbox much less cluttered and make it easier to read all of the list’s mail together.
- Use the Archive: Most lists have an archive which can be viewed on the web and which can be searched. Often the archive is restricted to list members only. You can use the archive to read the list via web, if you are away from home, and you can use it to search for information on topics that may have been discussed in the past (such as the names of treatments).
A bulletin board is a part of a website which allows people to post messages. The messages appear on the site and other people can respond. Bulletin boards are like Newsgroups and mailing lists in that they allow people to write a message and come back later and see what responses there are and what other topics have been discussed. I find that bulletin boards tend not to build as powerful communities as e-mail lists, probably because people forget to return to a web forum, but e-mail from a listserv keeps arriving until you actively sign-off the list.
You typically get a login after registering with the website and you can then post to the discussion. Often you can read the postings without registering. Bulletin boards are usually much less contaminated by SPAM and flame-wars than newsgroups.
Many of these are associated with commercial sites and may not be especially active or may not be managed with passion. But I do think this technology has potential and I know of a very few excellent high quality web discussions. I am particularly thinking of the discussion at The Melanoma Patient’s Page. You might find a bulletin board associated with the website of an advocacy group for your cancer.
Newsgroups are the oldest kind of online group; they are much older than the web. Newsgroups are like public bulletin boards open to the whole world. Newsgroups are classically read with a special program called a “newsreader”, which connects to a newserver maintained by your Internet Service Provider or to a third party news server. Both Netscape communicator and Outlook Express come with builtin news readers. To set up a newsreader you need the name of the newsserver and probably a login and password. Most Internet Service Providers have a newserver – contact yours for the machine name and your login. If all that sounds difficult, fear not. These days the easiest access is Google Newsgroups, which gives you free access through your web browser, and also includes an archive going all the way back to 1981. This archive can be useful in information searches, though you may want to limit to more recent postings. In order to post using Google, you need to get a free account from Goggle..
Because newsgroup postings are completely unrestricted and open, they are a magnet for SPAM, people with an axe to grind or conspiracy theory to prove, and interminable flame-wars. Often it’s hard to find any light to go along with the heat and SPAM. Despite these problems, because each Newsgroup is distributed worldwide, you can pick a lot of brains by posting to a Newsgroup. Newsgroups are my least favorite kind of online forum, but if you post you still may get some honest help.
A special disadvantage of posting to a Newsgroup is that in doing so you have just made your e-mail address public, where it will be harvested by spammers. You can expect to see a sharp increase in SPAM after posting to a news group. One defense that many have adopted is to “mangle” your return address to something that any human who wants to reply can see how to fix, but which is invalid as is. There is no easy way for a spammer’s automated harvesting program to know how to fix-up the return address. As an example, if your e-mail address was [email protected], you might change it to [email protected] You can also use an obviously invalid e-mail address like “[email protected]”, but then the only way for people to respond is publicly on the newsgroup. Normally people can also send you private e-mail which helps reduce clutter and occasionally is important for privacy reasons.
List of Internet News Groups
Note: The links in this list will take you to the Google page for each group.
- alt.support.cancer : Emotional and technical information about all types of cancer.
- sci.med.diseases.cancer : Technical discussions and information about all types of cancer.
- sci.med.prostate.cancer : Discussion of medical aspects of prostate cancer.
- alt.support.cancer.prostate : Prostate cancer support.
- alt.support.cancer.breast : Breast cancer support.
- sci.med : General discussion of medicine, sometimes including cancer.
Chat groups allow a group of people to type messages to each other in real time. Chat groups may be associated with a web site or may use messaging programs such as “IRC”. Chat groups are very different from mailing lists or newsgroups where people take time to compose a message, and then return hours or days later to see who’s responded and to see what other topics have been discussed. Do not make the mistake of confusing chat groups with mailing lists or Newsgroups! I think, while chat groups are potentially useful as immediate support, mailing lists offer the highest quality information and allow you to pick more brains – with a chat you only get whoever happens to be on at the time. I think the time it takes to compose an E-Mail message results in much more in depth support.
Some chats have scheduled times, often once a week. Some advocacy groups sponsor scheduled chats with experts. Often a chat room will be open all the time but you may not find anyone else there outside of scheduled chats.
Evaluating Online Support Groups
Many online support groups have archives where you can look through old postings, and some like bulletin board systems inherently show old postings. It’s worth looking through the archives or alternatively, monitoring the group for a little to get an idea of what it’s like. Also if there are group rules and policies, perhaps on a web page, have a look at them too. Some basic questions to consider:
- Is the group active? Look at how many messages were posted in the last few days if there is an archive, and look at how many members the group has if that information is available.
- Are people’s concerns answered?
- Is the discussion on topic and of interest to you?
- Is there much SPAM or many flame-wars?
- Is the group moderated (Moderation means postings are reviewed before being posted)? Moderation can be very effective in reducing SPAM and flame-wars, but obviously it can also be a tool of censorship.
- Who are group leaders and does their style work for you?
- Are group members free to express their mind or are some topics off-limits? If there are limits are they reasonable? I believe successful support groups are freedom powered – things go best when the greatest possible latitude for expression is allowed, but some limits are usually needed to keep the group friendly and on-topic.
- Are medical professionals active in the group? Most online groups have little participation from experts in the area, though often doctors or especially nurses who are also patients will chime in from time to time. Occasionally an online group includes an active world-class expert.
Posting and Usage Hints
These general hints will help you get the most out of Internet forums of all kinds.
- Don’t be Afraid to Post! The majority of members of most of these groups never post (called lurking). If the forum looks good and you have concerns or questions you think the group could help with, you will get the most benefit if you post.
- Help Out! Internet support groups are about mutual aid. If you have something to share either information or support please do. Helping others will also help you! Many groups have a few very knowledgeable people who answer lots of questions, but no one knows everything.
- Be Specific: You can’t get the right answers if you don’t ask the right questions! Whether you’re seeking emotional support or information, be as specific as you can about your situation, your questions and your concerns.
- Use Appropriate Subject Lines in Your Posting. “New member, first post” or “Help!” are not very specific. Instead, try things like, “Need help coping with scan anxiety”, or “New curamycin phase II clinical trial”. If you are replying to an earlier posting and the subject of the discussion has drifted, change the subject line to match.
- Look at the List Rules and get a feel for the culture.
- Check the Archive: If you are seeing specific information and the group has an archive you may find the answers by searching in the archive. Browsing the archive is also a good way to get a feel for the group culture.
- Cultivate a Thick Skin: Discussion on an Internet forum can be hotter than you’re used to and it’s best to be slow to take offense and to keep your eyes on the prize which is support, information, and a path to wellness. If you’re about to respond with anger, give it a few minutes and then think again. When you are missing the cues provided by body language misunderstandings can happen easily. When you can’t see the smile, you might miss the joke. Also, perhaps because of an increased feeling of anonymity online, people are often willing to say things in writing they wouldn’t dream of saying face-to- face. Finally, even the best people under a severe stress like cancer will make mistakes once in a while.
- Take Information and Advice With a Grain of Salt. On a quality Internet forum, much of the advice is excellent and is sometimes even lifesaving. Still, most of the advice and information in these groups comes from other patients, not professionals, and misinformation is all too common. Before you stake your life on something you learn on an Internet group, check it out with your doctor and research it yourself (See the section on Researching Your Options for how). If you’ve been getting a background in how your cancer is treated, you’ll have a much better feel for what makes sense and what is off target (See my article Cancer Types and Staging and the Research Section to get started gathering information).
- Security and Privacy: Don’t post your phone number, social security number etc to any public forum. Beyond that, don’t be overly paranoid. I recommend you use your real name, and e-mail address (possibly modified for anti-spam if you are using a newsgroup). If you are sending to an individual group member rather than the whole group and there is a reason to share phone numbers or addresses don’t hesitate if it seems appropriate. Many face-to-face friendships start online.
- No Marketing! If you’ve found this page because you’re trying to find a place to sell something rather than because you need help with cancer, just go away. No one wants SPAM and sales pitches and you will be instantaneously terminated from the better forums if you try to sell anything, and hated everywhere, even if you aren’t terminated.
This CancerGuide Page By Steve Dunn. © Steve Dunn
Page Created: October 1, 2004, Last Updated: October 1, 2004