Video: Cancer Survivor Sharon Anderson on the Importance of Patient-Donated Data


In 2002, Sharon Anderson was diagnosed with a rare form of cancer called leiomyosarcoma (LMS). She joined an online discussion group to explore treatment options with other LMS patients, and tried a drug typically used for breast cancer. Her treatment was successful. In the video above, she tells us how she helped fellow LMS patients gather data about their own tumors and share it with a researcher. The resulting cancer vaccine is now in a phase I clinical trial.

At Cancer Commons, we encourage patients to get involved in the research process. It can be as simple as donating your data to scientists. Anderson’s story is a reminder of just how important patient-donated data can be.

Anderson’s story is further explored in this excerpt from an article by Rachel Trachten, originally published in The East Bay Monthly:

 

Patient, Not Passive

For many, a life-threatening diagnosis means it’s time to log on, join forces, and get creative.

When she was diagnosed in 2002 with leiomyosarcoma (LMS), Sharon Anderson had already watched a friend die of the rare but aggressive cancer. “I knew it was doom and gloom,” says Anderson, who retired from her job as a social worker after the disease—which affects just four in a million people annually—was discovered. “No treatments worked; I was just giving away my possessions and telling people this was the beginning of the end.”       

Anderson—a 52-year-old San Francisco resident with wavy, dark blond hair and a no-nonsense demeanor—had cause for pessimism. She’d been diagnosed at stage IV on the classic cancer assessment scale that ranges from I to IV (there is no stage V), meaning that cancer had spread beyond the initial site along the muscle wall of her uterus. In LMS, malignant tumors develop from the body’s smooth muscle tissue, so they can appear in many locations.  

But Anderson’s fears never came true. When she posted information about herself on an online LMS support group, 20 people from the online list immediately wrote back and told Anderson that, in their opinion, her doctor was using incorrect surveillance to track the growing tumor in her lung. Through daily reading of postings to the list (a forum hosted by the Association of Cancer Online Resources, acor.org), Anderson learned what was working for other patients and what the latest research showed. “People on the list start from zero,” she says. “It’s like learning a foreign language. But people will hold your hand, and little by little it all starts to sink in.”

Ultimately, Anderson found a new doctor—one whose techniques were in line with the recommendations of her electronic peers. Following the suggestion of another LMS patient, a doctor who belonged to the online group, Anderson tried a drug typically used to treat breast cancer. Today, she has been disease-free for six years—thanks, she says, to online networking and self-advocacy…

To read the rest of the article, please visit The Monthly.

 

You can find Anderson and a few hundred other families dealing with LMS at the ACOR L-M-Sarcoma (online discussion group) here: http://listserv.acor.org/archives/l-m-sarcoma.html