Online cancer support groups catching on
By Melissa Heckscher Monday, September 25, 2006, 01:33 AM EDT
When 19-year-old Casandra Cuggino found out she had cancer, it took her only a few days to realize she was going to need support.
So, she went online.
"Hi," she wrote in a message posted to Grouploop.org, a Web site run by The Wellness Community, a cancer support organization with 21 branches nationwide.
"I was diagnosed on Monday and am starting chemo today. I'm going to be in the hospital for a while, so I'm looking for someone to talk to that has gone through the same thing."
The next day, an 18-year-old named Sophie responded:
"I have been in remission for osteosarcoma for almost five years," she wrote. "I would love to chat with you. What kind of cancer do u have?"
Fifteen-year-old Amanda chimed in: "I'm always willing to talk."
Their words helped. And as Cuggino embarked on her treatment, she started visiting the Group Loop message boards regularly to find teens in similar situations.
"It makes being sick a lot easier," said Cuggino, a Michigan resident who was diagnosed with acute lymphocytic leukemia in May. "They have helped me most when I go on and talk about a new medication I am on. People tell me how well they handled it or if they had problems. It's easier if someone says that they had a weird side effect and you have it, too. Then you know you're not alone."
Speaking via Instant Message from a Michigan hospital where she was admitted earlier this month after running a high fever, Cuggino added, "My cancer is nothing compared to some."
Online support is nothing new. Since the World Wide Web's beginnings, Internet chat rooms, instant message sessions and online bulletin boards have allowed Web surfers to congregate and discuss topics as broad as current events and cancer. But only recently have physicians begun to realize the benefits of such interactions.
"It's something we're really trying to understand better," said Dr. Ernest Katz, director of behavioral sciences at the Children's Center for Cancer and Blood Diseases at Childrens Hospital Los Angeles. "For the very private teen, or for someone who lives out in the boonies - which is much of this country, really - they don't really have a support group or access to other people who are going through what they're going through."
The Wellness Community, based in Washington, D.C., is the largest support program in the country devoted solely to providing emotional support to people affected by cancer. It was founded in 1982 and has since offered support groups and other services for people with cancer and their caretakers.
The online version of the organization, The Virtual Wellness Community, was launched in 2002 and offers real-time weekly online meetings. Group Loop, its teens-only component, was launched in 2004 and has since attracted the attention of more than 7,000 teens with cancer.
"The message boards offer the ability to drop in at any time," Katz said. "Teens love that because it's spontaneous and it's asynchronous. ... It really fits into the MySpace kind of approach."
It's an approach that, doctors say, helps teens maintain a sense of normalcy that might be harder to achieve with face-to-face meetings.
"These teens don't want to see themselves as being ill," said Dr. Mitch Golant, vice president of research and development for The Wellness Community. "They want to return to their lives and have their lives be as normal as possible, without the stigma and without being identified as ill."
Though more research needs to be done, Golant said the benefits of online support groups appear to be on par with their in-person counterparts. A 2001 Stanford University study of women with breast cancer, for instance, showed that patients who belonged to online support groups demonstrated increased coping skills and decreased levels of depression - similar to the effects of traditional face-to-face groups.
"I have seen online support groups blossom into real close-knit communities," said Michael Fenichel, past-president of the International Society for Mental Health Online and author of an online reference guide, "Current Topics in Psychology" ( www.fenichel.com/Current.shtml).
"A disadvantage is that not all online resources are equal," he said. "Some are hosted or moderated by professionals, some by peers, some by a combination."
Indeed, while some online support groups are moderated by social workers or psychologists, others are virtual free-for-alls allowing any and all banter to appear online. Fenichel said users should investigate support groups carefully and choose groups that exist under an umbrella organization or are dedicated to a specific disease or cause.
Naturally, the scope of online support goes far beyond cancer. At Yahoo Groups ( www.groups.yahoo.com), a site that acts as a portal to thousands of niche-specific discussion groups, topics run the gamut from pet care to eating disorders.
And there's no shortage of respondents. As of last week, there were 7,790 members in a dog behavior group, for instance, 2,868 members in a bulimia support group and 4,092 in a stress-management group.
According to Group Loop records, 980 teens have registered with the site and about 150 of them participate in the online discussion boards.
Their messages are startlingly personal.
"I was just diagnosed with Hodgkin's lymphoma and it seems at any point in time I can just cry and not really be able to control it," writes one teen. "I was just wondering if it stops because you get used to how your life changes."
The posted response came within hours: "I think that you pretty much get used to it. Though, sometimes, I still cry myself to sleep."
Wrote another teen: "The biggest piece of advice I can give is to just accept it. ... I know that probably seems crazy at this moment in your life, but there will be positive things that come from this if you allow them to. Cancer sucks. ... But the more you hate it and the more you fight what's going on in your life, the worse it becomes. I'm here if you ever need to talk."
OLD-FASHIONED SUPPORT
Though online groups offer convenience and a sense of anonymity (users don't have to reveal identities) some people still prefer face-to-face interaction.
"I think some people need to actually eyeball the person they're interacting with," said Mary Jane Landrock, a licensed clinical social worker who runs a caregivers support group and a burn support group at Torrance Memorial Medical Center in Torrance, Calif. "They enjoy getting hugged by other people. Sometimes afterward they hang out in the parking lot and they talk."
Landrock has run support groups for more than nine years. She said some people need personal contact to cope with the challenges of cancer, or caring for people with cancer.
"What keeps them coming back is a sense of camaraderie, a sense that they're not going through this by themselves," Landrock said.
Rebecca Weintraub can relate. A breast cancer survivor in Southern California who has been in remission for more than three years, she said her support group gave her strength to face her disease.
"When you're not feeling strong, the group is feeling strong for you," Weintraub said. "When you're feeling pessimistic, the group feels optimistic for you."
In addition, the meetings she attended gave her something she could never have gotten online: visual encouragement.
"You've lost your hair, you feel like you're never going to have hair on your body, then somebody comes in and whips off their wig and their hair is starting to grow back."
But for others, such as Cuggino, who said Group Loop has helped her get through her chemotherapy, online support suits them.
"I wouldn't like to do any kind of in-person group counseling no matter what the subject," Cuggino said. "I wouldn't feel comfortable."
So, she went online.
"Hi," she wrote in a message posted to Grouploop.org, a Web site run by The Wellness Community, a cancer support organization with 21 branches nationwide.
"I was diagnosed on Monday and am starting chemo today. I'm going to be in the hospital for a while, so I'm looking for someone to talk to that has gone through the same thing."
The next day, an 18-year-old named Sophie responded:
"I have been in remission for osteosarcoma for almost five years," she wrote. "I would love to chat with you. What kind of cancer do u have?"
Fifteen-year-old Amanda chimed in: "I'm always willing to talk."
Their words helped. And as Cuggino embarked on her treatment, she started visiting the Group Loop message boards regularly to find teens in similar situations.
"It makes being sick a lot easier," said Cuggino, a Michigan resident who was diagnosed with acute lymphocytic leukemia in May. "They have helped me most when I go on and talk about a new medication I am on. People tell me how well they handled it or if they had problems. It's easier if someone says that they had a weird side effect and you have it, too. Then you know you're not alone."
Speaking via Instant Message from a Michigan hospital where she was admitted earlier this month after running a high fever, Cuggino added, "My cancer is nothing compared to some."
Online support is nothing new. Since the World Wide Web's beginnings, Internet chat rooms, instant message sessions and online bulletin boards have allowed Web surfers to congregate and discuss topics as broad as current events and cancer. But only recently have physicians begun to realize the benefits of such interactions.
"It's something we're really trying to understand better," said Dr. Ernest Katz, director of behavioral sciences at the Children's Center for Cancer and Blood Diseases at Childrens Hospital Los Angeles. "For the very private teen, or for someone who lives out in the boonies - which is much of this country, really - they don't really have a support group or access to other people who are going through what they're going through."
The Wellness Community, based in Washington, D.C., is the largest support program in the country devoted solely to providing emotional support to people affected by cancer. It was founded in 1982 and has since offered support groups and other services for people with cancer and their caretakers.
The online version of the organization, The Virtual Wellness Community, was launched in 2002 and offers real-time weekly online meetings. Group Loop, its teens-only component, was launched in 2004 and has since attracted the attention of more than 7,000 teens with cancer.
"The message boards offer the ability to drop in at any time," Katz said. "Teens love that because it's spontaneous and it's asynchronous. ... It really fits into the MySpace kind of approach."
It's an approach that, doctors say, helps teens maintain a sense of normalcy that might be harder to achieve with face-to-face meetings.
"These teens don't want to see themselves as being ill," said Dr. Mitch Golant, vice president of research and development for The Wellness Community. "They want to return to their lives and have their lives be as normal as possible, without the stigma and without being identified as ill."
Though more research needs to be done, Golant said the benefits of online support groups appear to be on par with their in-person counterparts. A 2001 Stanford University study of women with breast cancer, for instance, showed that patients who belonged to online support groups demonstrated increased coping skills and decreased levels of depression - similar to the effects of traditional face-to-face groups.
"I have seen online support groups blossom into real close-knit communities," said Michael Fenichel, past-president of the International Society for Mental Health Online and author of an online reference guide, "Current Topics in Psychology" ( www.fenichel.com/Current.shtml).
"A disadvantage is that not all online resources are equal," he said. "Some are hosted or moderated by professionals, some by peers, some by a combination."
Indeed, while some online support groups are moderated by social workers or psychologists, others are virtual free-for-alls allowing any and all banter to appear online. Fenichel said users should investigate support groups carefully and choose groups that exist under an umbrella organization or are dedicated to a specific disease or cause.
Naturally, the scope of online support goes far beyond cancer. At Yahoo Groups ( www.groups.yahoo.com), a site that acts as a portal to thousands of niche-specific discussion groups, topics run the gamut from pet care to eating disorders.
And there's no shortage of respondents. As of last week, there were 7,790 members in a dog behavior group, for instance, 2,868 members in a bulimia support group and 4,092 in a stress-management group.
According to Group Loop records, 980 teens have registered with the site and about 150 of them participate in the online discussion boards.
Their messages are startlingly personal.
"I was just diagnosed with Hodgkin's lymphoma and it seems at any point in time I can just cry and not really be able to control it," writes one teen. "I was just wondering if it stops because you get used to how your life changes."
The posted response came within hours: "I think that you pretty much get used to it. Though, sometimes, I still cry myself to sleep."
Wrote another teen: "The biggest piece of advice I can give is to just accept it. ... I know that probably seems crazy at this moment in your life, but there will be positive things that come from this if you allow them to. Cancer sucks. ... But the more you hate it and the more you fight what's going on in your life, the worse it becomes. I'm here if you ever need to talk."
OLD-FASHIONED SUPPORT
Though online groups offer convenience and a sense of anonymity (users don't have to reveal identities) some people still prefer face-to-face interaction.
"I think some people need to actually eyeball the person they're interacting with," said Mary Jane Landrock, a licensed clinical social worker who runs a caregivers support group and a burn support group at Torrance Memorial Medical Center in Torrance, Calif. "They enjoy getting hugged by other people. Sometimes afterward they hang out in the parking lot and they talk."
Landrock has run support groups for more than nine years. She said some people need personal contact to cope with the challenges of cancer, or caring for people with cancer.
"What keeps them coming back is a sense of camaraderie, a sense that they're not going through this by themselves," Landrock said.
Rebecca Weintraub can relate. A breast cancer survivor in Southern California who has been in remission for more than three years, she said her support group gave her strength to face her disease.
"When you're not feeling strong, the group is feeling strong for you," Weintraub said. "When you're feeling pessimistic, the group feels optimistic for you."
In addition, the meetings she attended gave her something she could never have gotten online: visual encouragement.
"You've lost your hair, you feel like you're never going to have hair on your body, then somebody comes in and whips off their wig and their hair is starting to grow back."
But for others, such as Cuggino, who said Group Loop has helped her get through her chemotherapy, online support suits them.
"I wouldn't like to do any kind of in-person group counseling no matter what the subject," Cuggino said. "I wouldn't feel comfortable."
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