Patient Advocacy: A Patient’s Perspective

IT WAS LATE June 2004 when Trisha Torrey discovered a golf-ball-sized lump on her torso. Little did she know her life was about to change in more significant ways than she could ever imagine. “I contacted my family doctor the next day, and he immediately sent me to a surgeon to remove it that afternoon,” she says. “He told me they’d let me know as soon as they heard back from the lab.”

A week passed with no word, so she contacted the surgeon’s office and was told they didn’t have the results back yet. After yet another week, the surgeon finally called with grim news: Torrey had a very rare cancer — a lymphoma — called subcutaneous panniculitis-like T-cell lymphoma. A second devastating blow came when Torrey was told that the reason the lab results took so long was because the outcome was so rare, and that a second lab had been called for a second opinion. “Two labs have independently confirmed these results,” she was told. “We’ll make an oncology appointment for you as soon as possible.”

While waiting two weeks for the oncology appointment, Torrey scoured the Internet for information about her rare diagnosis, and the dismal prognosis and high death rate only fueled her fears. When she finally met with the oncologist, she was surprised when additional blood work and a CT scan showed no signs of lymphoma. Even more surprising was the fact that despite doubts being raised, her physician insisted she begin chemotherapy immediately. “I asked about the possibility that the lab results were wrong,” she explains. “I was told there was not a chance since two labs had independently confirmed the results.”

Unconvinced, Torrey sought a second opinion. Offended when he learned she was postponing chemo, one of her doctors confronted her, snapping: “What you have is so rare, no one will know any more about it than I do!” Torrey says the anger she felt in that moment caused a shift in her perspective that not only propelled her to get a referral to an oncologist with expertise in her diagnosis, it also prompted her to take a closer look at her own lab results, where she uncovered numerous inconsistencies. “If I had to pinpoint an exact moment when my patient advocacy mission began, that moment would be it,” says Torrey.

At her insistence, Torrey’s biopsy was sent for review to a specialist at the National Institutes of Health, and three weeks later came the shocking news: Torrey did not have cancer. Her second diagnosis was panniculitis (an inflammation of fat cells), although that proved to be inaccurate as well. To date, Torrey has never been correctly diagnosed.

After working through the shock, anger and relief, Torrey was left with something else: purpose. “I believe everything happens for a reason,” she says. “I am here today advocating for others — an outcome from a horrible experience that can result in good for others. Today I write, speak, and look for ways patients, their caregivers, advocates and providers can collaborate to make the healthcare system work.”

Widely recognized as Every Patient’s Advocate, Torrey says her mission is helping patients get what they need from the healthcare system, whether that comes from advice, improved communications between patients and their providers, or by matching them with an advocate who can help them. The author of six books, Torrey was named CNN’s Hero of Patient Empowerment in 2008. “One of the biggest blessings in my life has been my ability to use my personal experiences to propel my work, and that the very worst thing that had ever happened to me (a terminal cancer diagnosis) has turned out to be the very best thing that ever happened to me (a career that I love),” she says. “The lesson is that one can take anger, fear and frustration and disable its death grip by using it to create good in the world.”