Sarcoma Alliance Offers Tips for Supporting Cancer Patients Online

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The Sarcoma Alliance, a national nonprofit organization, has collected suggestions from professionals on how people can best support one another, even when there’s no facilitator to guide the group.

Karen Milo, a clinical psychologist in Tampa

Karen Milo, a clinical psychologist in Tampa

Some people may blame themselves if their cancer comes back and spreads. They may think they didn’t pray hard enough, fight hard enough or stay positive.

Telling cancer patients to fight, pray or stay positive can hurt more than help, according to the Sarcoma Alliance, a nonprofit organization that provides guidance, education and support to people affected by sarcoma.

“Don’t offer advice unless someone asks for it,” says Margaret Price, a social worker at the Moffitt Cancer Center in Tampa. She has run cancer support groups for 15 years.

“You’re welcome to say what helped you,” she says. “But if you tell people what they should do, they may feel that you don’t want to hear about their doubts, fears, anger or despair.”

“Some people may blame themselves if their cancer comes back and spreads,” says psychologist Karen Milo. “They may think they didn’t pray hard enough, fight hard enough or stay positive.” She worked at Moffitt and continues to see cancer patients in her private practice.

Members of the Sarcoma Alliance have helped create support groups for sarcoma patients. Because sarcoma is a rare cancer, however, it can be hard to get enough people in the same place at the same time. That’s why the Alliance also offers online support: a Facebook page, discussion board, peer-to-peer network, live chat room, blog and YouTube channel, says board member Suzie Siegel of Tampa, who has participated in different forums since she was diagnosed with leiomyosarcoma in 2002.

In an in-person support group, a trained facilitator can lay down ground rules and gently steer the conversation if it takes an unhelpful turn. Because online support rarely has that much guidance, the Alliance has developed the following suggestions, in consultation with Price, Milo and other professionals:

-- Feel free to talk about how your beliefs have helped you, but don’t assume your beliefs will comfort others. For example, Price says, you might say how prayer helped you or welcome prayers from others, but don’t tell them that they need to pray or keep the faith. That can silence those who are not religious or those who want to talk about fears and doubts.

-- Beware the “tyranny of positive thinking,” writes psychiatrist Jimmie C. Holland in her book “The Human Side of Cancer.” It’s great if people can enjoy life despite their diagnosis and treatment. But telling people they need to stay positive, or that a positive attitude will help them survive, can keep them from expressing “negative” emotions. That’s not healthy, writes Holland, who pioneered psychosocial treatment for cancer patients.

“Research shows that a positive attitude doesn’t actually help cancer patients live longer,” Price says.

-- Think twice before comparing cancer to war. This metaphor has been around for a long time, and it works for some, but not others, says Price, who spoke on the topic at a Moffitt conference this year. Some people prefer to work on healing and acceptance in their cancer journey. If cancer is a fight, then it will have winners and losers. People may feel defeated if their cancer advances, she says, with little interest in hospice or other help for the time they have left.

“The rest of a patient’s life is often disregarded or put on hold because all resources must be marshaled for the war effort,” she says. “This intense focus may serve as a barrier to alternate understandings of one’s life in the context of profound illness.”

Patients have a right to decide when they want to stop a particular treatment or all treatment. This doesn’t make them any less courageous, she adds.

-- Don’t give medical advice. You can discuss your own experiences and interests, but remember that cases are different. This is especially true for a rare cancer like sarcoma. The chemo that worked for you may not be appropriate for someone else, for instance.

-- Don’t make a major change in your diet or take supplements without consulting your physician. Raw fruits and vegetables can be risky for chemo patients with low white-cell counts, for example. Like conventional medicine, herbs can have side effects. Social worker Tom May, program director for the Cancer Support Community-Redondo Beach in Los Angeles County, says he often hears people tell others that they can cure themselves if only they take X or eat Y.

-- Don’t monopolize conversations.

-- Avoid partisan politics.

-- Keep in mind that it’s easier to misunderstand someone online than in person.

-- Try not to be alarmed at the experiences of others. Support groups tend to attract the newly diagnosed, those with advancing disease, and those with physical impairments. You're less likely to meet people who were treated years ago, whose cancer has not returned, and who can still do whatever they did before their diagnosis.

"You are not alone" is the motto of the Sarcoma Alliance, a national nonprofit based in Mill Valley, Calif. It serves the newly diagnosed, long-term survivors, family members, caregivers and friends. All services are free.

Sarcoma is a cancer of connective tissue, including muscle, bone, fat, nerve, cartilage and blood vessels. It can occur throughout the body, and it strikes men, women and children of all ages.

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