Chapter 6    ONLINE CANCER SUPPORT GROUPS

Online Cancer Support Groups

Can I use the internet to communicate with other patients with the same condition?

One of the additional benefits of the internet is that it allows people with common interests or problems from all over the world to share their experiences in online groups.

This is a potential goldmine of information. Think about the opportunity.

Imagine that you were in a room of 500 other patients who had been diagnosed with the same disease you’re researching. Some may have been diagnosed recently. Others may have been diagnosed a few years previously.

Everybody in that room would have gone through the process of researching, talking to other patients, and talking to medical specialists.

Plus, many people in the room would have already undergone treatment and would be in a position to comment on how effective the treatment was and what side effects they experienced.

People may comment on how they were treated at a top medical center and you would be able to compare it to the treatment you may be about to receive at your medical center.

A good online cancer support group is the internet equivalent of being in that room with 500 other patients.

But, like most things in life that have a lot of potential benefit, there is a potential downside.

The downside is that although patients’ personal stories may be extremely informative, you must remember that learning about one person’s experience does not mean that everybody will have the same experience.

You should use these forums as an opportunity to get a sense of what the controversial issues are and what avenues other highly motivated patients are pursuing in their research.

Then, you should combine the information you’ve gained from this site with the more scientific information at the NCI site and with the medical literature which you’ll learn how to search in the next chapter.

The best forums are moderated though so that no one can blatantly pitch commercial products or cures that they intend to profit from.

The resource that I’m about to tell you about has certain people who read every post and suspend the privileges of any one who disregards the policies of the list.

There are many other online support groups besides the one I’m about to recommend. And, these groups are so valuable that you may want to join a number of them. But, I would be wary of any non-moderated list which seemed to have a lot of commercial messages.

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