Aug. 6, 2001 -- "Oh, God, I don't want to die."
Those were among the first Linda Baginski uttered five years ago when she was diagnosed with breast cancer. "My first emotions were terror laced with fear," she tells WebMD.
Women newly diagnosed with breast cancer -- or anyone facing a serious medical condition for the first time -- may find the sentiments familiar. And they may recognize what Baginski described as an urgent need not only for expert medical advice and treatment, but for support -- from friends, family, acquaintances, and others who have already passed through the furnace of diagnosis and treatment.
The latter may be particularly important, she says.
"You could have the most loving, supportive family imaginable, but no one knows what it feels like to have cancer except one who has it," says Baginski.
It is that notion -- that no one knows an illness like someone who is suffering from it -- which has lent force to the idea of patient support groups. Today, such groups meet around the country to give social, emotional, and educational assistance to individuals and families wrestling with such diverse conditions as Alzheimer's, fibromyalgia, and Tourette's syndrome.
Yet support groups can usually only enhance -- and rarely ever replace -- the support one finds "naturally" in spouses, extended family, and friends. "That's where you turn first," says Baginski.
A growing body of medical literature testifies to the influence of social support in helping people fight their illnesses. The man or woman coping with cancer, or any other life-threatening condition, may be too overwhelmed to ask for help, and unwilling to "burden" others. The active assistance of significant others can be crucial.
"Right away, the first person I called was a girlfriend who used to do my hair," she says. "She came over and shaved my head, and we put on the wig. We cried together. But then we went to lunch and went shopping.
"I needed that type of support right at that time," Baginski says.
Profound Emotional Processes
Some new research suggests that friends like Baginski's shopping companion not only provide nurturing in a time of need but may help prolong life.
At a recent meeting of the American Psychosomatic Society, Karen Weihs, MD, presented research showing that a network of supportive friends and relatives increases a woman's chances of remaining cancer-free after treatment for breast cancer.
In the study, 91 women who were newly diagnosed with breast cancer were asked to list the people whom they could call on for help at the time their chemotherapy ended. The patients were then followed for seven years to see how they did.
"What I found is that women who reported having more people to call on for help had a longer time to progression of illness and less likelihood of progression," says Weihs. "It adds to an already existing literature showing that people who believe themselves to have more support, or who perceive that their support network is more adequate, are more likely to do well when they have breast cancer."
She is assistant professor of psychiatry at George Washington University Medical Center in Washington, D.C.
Interestingly, women with recurrentbreast cancer who had large social networks were actually at greater risk for progression of illness.
Weihs says that surprising finding is in keeping with similar findings on people with end-stage kidney disease. For people with very severe illness, the research suggests, a large social network entailing obligations may be a stressful burden, rather than an advantage.
But for people in the study with earlier stage illness, a social network was clearly a good thing. Weihs emphasized that the important point is not the number of social contacts -- which might be more or less superficial -- but the number of really close contacts that people perceived as "being there" in a time of need.
For that reason, she says she believes that while patient support groups have a place, what really counts is the immediate network of family and friends surrounding the sick person.
"The kinds of processes we are talking about here are profound emotional processes, not superficial connections," Weihs tells WebMD. "It has to do with having a genuine feeling of that people care about you. That comes over time and doesn't just happen in the short run."
But while support groups may be of secondary importance to the immediate network of family and friends, Baginski says they do offer something that friends and family cannot.
That something is firsthand knowledge of the rigors of treatment. "Women have called me scared to death before their first chemotherapy," she says. "Well, of course you are going to be scared. You could call your mom or your best friend, but to call someone who has actually been there with the chemo going through their veins -- that's very calming."
At City of Hope National Medical Center in Duarte, Calif., Baginski helped start her own support group combining informal discussion and sharing of stories with educational instruction about breast cancer from visiting experts. The idea for combining the elements grew from her dissatisfaction with groups she had experimented with which were either too small and intimate or too large and impersonal.
Baginski says support groups may have an especially vital role to play after patients have passed through the harrowing stage of initial diagnosis and treatment. Though they are free of disease, breast cancer survivors may continue to seek out a community of those who know what they have been through.
"After you are done with the constant monitoring, the doctor visits, the treatments to kill the cancer -- when all that's over there seems to be a common separation anxiety we all experience," Baginski says. "The support groups offer a link back to the safety of the clinical environment that they are not as close to anymore."
Even people who would never seek out a group setting are strongly urged to find at least one other patient or cancer survivor to "buddy-up" with, Baginski says. Today, she works as a patient resources coordinator at City of Hope, linking newly diagnosed cancer patients with survivors.
Don't totally discount support groups because you've heard that all you do is "just sit around and whine and bemoan your conditions," Baginski says. "Give them a try. If the first one doesn't work, look for another. And if you can't find one that meets your needs try to start your own."
All You Need Is Love
Yes, the Beatles were onto something, but WebMD members have known it all along -- when it comes to surviving serious illness, you can get by with a little help from your friends.
Want more proof? Read these testimonials of help and support from cyberfriends in far-flung places:
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