Virtual friends in a cancer world

TORONTO – “Forgive me a freakout moment here,” I wrote to a woman’s-only Internet bicycling forum I’ve been posting on for years.

“I have to see a specialist for something that they suspect is very early breast cancer.” It was my real friends who accompanied me to the medical appointments after that initial shock, and held my hand when I emerged from general anaesthetic and surgery.But in a world of instant Internet communications, a group of women I have never met provided a second level of support as I faced up to the diagnosis you never want to get.The first replies to my post came within minutes, both from women with stories of their own and from those offering sympathy and emoticon hugs.I don’t know their real names, and they don’t know mine, yet over the next weeks and months this virtual support network kept prodding me for news, and reminding me that they were rooting for me at every step of the way.”I’ve read that good quality chocolate has cancer-fighting properties,” one woman wrote with a big smiley face of encouragement.”Hmmm, funny, I was working away when something told me to check the Women’s Forum,” another virtual friend replied.”Aaah, yes.Someone said, ‘chocolate’.”Christina Koenig, head of media relations for the web-based support group Breast Cancer Network of Strength said Internet resources could be a tremendous comfort to women facing scary diagnoses like mine.”You keep a brave face for your family and your friends and workmates and for your children, and it’s wonderful to be able to talk to people like you who have been where you are now,” she said.”It’s anonymous, it’s honest and it’s immediate.”‘TERRIBLE SISTERHOOD’ Network of Strength set up its own Internet forums last month, supplementing a round-the-clock telephone support centre and offering women with a diagnosis of breast cancer a chance to compare notes and experiences.”It’s a terrible sisterhood to be part of,” said Koenig, a former journalist who is herself a breast cancer survivor.”But nobody understands it like someone who has been through it.”Dr Marisa Weiss, a Philadelphia-area breast cancer oncologist and founder of a fact-filled website breastcancer.org, said it was often easier for patients to seek advice on the Internet than to go to hospital support groups, which could take place at inconvenient times or in hard-to-reach locations.”The Web gives people the enormous advantage of asynchronous communication – they can jump in and out on their own time, whenever they want to, and they can be completely anonymous or completely open,” she said.”When we started breastcancer.org 8-1/2 years ago, I would never have imagined that there would be 22 000 discussion threads going on in our community.”Weiss agreed the Internet had helped make patients better informed about their options, although she said the site’s moderators sometimes had to step in, perhaps when advice was too dogmatic, or inappropriate.”When you have a group of people who are passionate about a cause, some of them will feel very strongly that their own choices were correct,” she said.VIRTUAL HUGS For my part, I’ve welcomed the advice and information I got from fellow breast cancer survivors as well as the virtual hugs from the biking crowd.I’ve likened my cancer experience to a roller-coaster in the dark: you never know which way it will lurch next.First came the routine tests, and then the follow-up examinations, and my mood lurched up into the stratosphere when initial results from a needle biopsy contained the delicious words “likely benign”.A long five days later came the follow-up report, which recommended surgery because the suspicious area probably wasn’t benign at all.I never felt a lump, never felt sick, never knew there was anything there to worry about.But a couple of white specks on a mammogram had pointed to problems, and while the vast majority of those specks turn out to be nothing, mine did not.In the grand scheme of things, I got off pretty lightly.When the roller-coaster finally stopped, it left me with a diagnosis of something called ‘ductal carcinoma in situ’, a small and non-invasive early stage cancer that won’t even need chemotherapy, with all its nasty side effects.”This is almost preventative medicine,” my radiation oncologist said of the 16-session course of treatment I start in July.My family doctor, who has been supportive every step of the way, was even more encouraging.”This is the lowest grade of cancer we could find,” she said.Nampa-Reuters On the web: http://www.networkofstrength.org/; http://www.breastcancer.orgIt was my real friends who accompanied me to the medical appointments after that initial shock, and held my hand when I emerged from general anaesthetic and surgery.But in a world of instant Internet communications, a group of women I have never met provided a second level of support as I faced up to the diagnosis you never want to get.The first replies to my post came within minutes, both from women with stories of their own and from those offering sympathy and emoticon hugs.I don’t know their real names, and they don’t know mine, yet over the next weeks and months this virtual support network kept prodding me for news, and reminding me that they were rooting for me at every step of the way.”I’ve read that good quality chocolate has cancer-fighting properties,” one woman wrote with a big smiley face of encouragement.”Hmmm, funny, I was working away when something told me to check the Women’s Forum,” another virtual friend replied.”Aaah, yes.Someone said, ‘chocolate’.”Christina Koenig, head of media relations for the web-based support group Breast Cancer Network of Strength said Internet resources could be a tremendous comfort to women facing scary diagnoses like mine.”You keep a brave face for your family and your friends and workmates and for your children, and it’s wonderful to be able to talk to people like you who have been where you are now,” she said.”It’s anonymous, it’s honest and it’s immediate.” ‘TERRIBLE SISTERHOOD’ Network of Strength set up its own Internet forums last month, supplementing a round-the-clock telephone support centre and offering women with a diagnosis of breast cancer a chance to compare notes and experiences.”It’s a terrible sisterhood to be part of,” said Koenig, a former journalist who is herself a breast cancer survivor.”But nobody understands it like someone who has been through it.”Dr Marisa Weiss, a Philadelphia-area breast cancer oncologist and founder of a fact-filled website breastcancer.org, said it was often easier for patients to seek advice on the Internet than to go to hospital support groups, which could take place at inconvenient times or in hard-to-reach locations.”The Web gives people the enormous advantage of asynchronous communication – they can jump in and out on their own time, whenever they want to, and they can be completely anonymous or completely open,” she said.”When we started breastcancer.org 8-1/2 years ago, I would never have imagined that there would be 22 000 discussion threads going on in our community.”Weiss agreed the Internet had helped make patients better informed about their options, although she said the site’s moderators sometimes had to step in, perhaps when advice was too dogmatic, or inappropriate.”When you have a group of people who are passionate about a cause, some of them will feel very strongly that their own choices were correct,” she said.VIRTUAL HUGS For my part, I’ve welcomed the advice and information I got from fellow breast cancer survivors as well as the virtual hugs from the biking crowd.I’ve likened my cancer experience to a roller-coaster in the dark: you never know which way it will lurch next.First came the routine tests, and then the follow-up examinations, and my mood lurched up into the stratosphere when initial results from a needle biopsy contained the delicious words “likely benign”.A long five days later came the follow-up report, which recommended surgery because the suspicious area probably wasn’t benign at all.I never felt a lump, never felt sick, never knew there was anything there to worry about.But a couple of white specks on a mammogram had pointed to problems, and while the vast majority of those specks turn out to be nothing, mine did not.In the grand scheme of things, I got off pretty lightly.When the roller-coaster finally stopped, it left me with a diagnosis of something called ‘ductal carcinoma in situ’, a small and non-invasive early stage cancer that won’t even need chemotherapy, with all its nasty side effects.”This is almost preventative medicine,” my radiation oncologist said of the 16-session course of treatment I start in July.My family doctor, who has been supportive every step of the way, was even more encouraging.”This is the lowest grade of cancer we could find,” she said.Nampa-Reuters On the web: http://www.networkofstrength.org/; http://www.breastcancer.org