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Breast Cancer Patients Find Support Online

Article date: September 26, 2012

Makiko Fliss

"WhatNext is the place to ask questions intimately with people I feel comfortable with."

 

Breast cancer patient Makiko Fliss lives in Cranbury, NJ and has a cancer health care team and supportive family and friends. But one of the most important members of her support network is a woman named Lee Penn who lives 1,200 miles away in Minneapolis. The two met through WhatNext — an online support network developed in part with the American Cancer Society that matches users with peers and resources.

Lee PennFliss was used to running 4 to 5 miles a day before she got sick, but after starting chemotherapy treatments, she didn’t have the energy. Without exercise, her appetite decreased, and she began losing weight. Penn, who is also in treatment for breast cancer, is an avid bicyclist. When she read Fliss’ WhatNext posts describing her struggle to exercise while undergoing chemo, she suggested cycling. Fliss gave it a try. She found pedaling was easier, and she liked it. Soon, her appetite increased, she began eating more, and she regained some of her energy. Fliss and Penn began trading messages several times a day to encourage each other through their breast cancer treatments and discuss biking. Fliss recently completed a 62-mile fundraising ride.

Fliss said, “Lee is amazing. She’s given me so many insights. I want to go to Minnesota with my bike to meet her.”

A growing trend

Advances in medical care are helping more people get through a cancer diagnosis successfully – in fact, there are nearly 3 million breast cancer survivors in the United States today. But cancer treatment can also cause problems, both physical and emotional, for survivors and those who care for them.

Fliss and Penn are among breast cancer patients turning to a growing number of Internet cancer support groups for help, information, and emotional support. Online support can be accessed from the convenience of home and offers 24-hour access, anonymity, and information. Fliss said she gets tons of support from WhatNext, and when she needs help, receives it immediately. Fliss said, “WhatNext is the place to ask questions intimately with people I feel comfortable with.”

Cancer Survivors Network (CSN) is another American Cancer Society online community, where users can join discussion boards, communicate privately with other users, and post pictures and songs to online galleries. The breast cancer group is the largest and most active. According to Greta Greer, MSW, LCSW, American Cancer Society, director, survivor programs, members of CSN’s breast cancer board have created a group identity based on trust, solidarity and support. Greer says many members take an active role in greeting new members, providing information, and responding to posts, but many others benefit from simply reading and observing others’ interactions.

Thousands of survivors and caregivers have participated in telephone and online workshops from CancerCare. Top clinicians, researchers, and practitioners in the field offer cancer survivors, their families, friends and health care professionals practical information to help them cope with concerns that arise after treatment ends.

The educational workshops, which are free and open to the public, are a collaboration of CancerCare, the American Cancer Society, the National Cancer Institute: Office of Cancer Survivorship and Office of Communications and Education, LIVESTRONG , Intercultural Cancer Council, Living Beyond Breast Cancer and National Coalition for Cancer Survivorship.

Makiko Fliss said the online support she’s received has been invaluable. Fliss said, “I didn’t realize cancer is a family disease – an emotional disease. There are so many options and decisions you have to make, and it never ends. Because of WhatNext, I have a place to go to keep my sanity in check.”