Forget Me Not: A Doctor’s Drive to Ensure MBC Patients are Heard
MEDICAL PERSPECTIVE

Dr. Fatima Cardoso has dedicated her career to ensuring MBC patients no longer feel forgotten, spearheading guidelines that improve both quality of life and survival.

 

A decade ago, two surveys changed the course of Dr. Fatima Cardoso’s life - and with it, the trajectory of treatment for metastatic breast-cancer patients worldwide. The two research papers found that amid the progress in combating early-stage breast cancer, women with a metastatic form of the disease felt forgotten. "These women, a full third of breast cancer patients, felt lost in the pink message," says Dr. Cardoso, now Director of the Breast Unit of the Champalimaud Clinical Center in Lisbon, Portugal, and a top breast cancer specialist. "They felt totally alone and abandoned by everyone, including physicians, scientists, even the advocacy world. And on top of that they felt guilty, as though the cancer had come back because they had done something wrong."

Dr. Cardoso, who describes herself as unable to ignore a problem once she’s aware of it, set out to change that. It turned out to be harder than she’d imagined. She discovered that MBC was a taboo topic in the advocacy community, for one thing. "People wanted to talk about a cure, about eating well and living well so that everything would be fine," she says. "And that’s not true. So the message is not a happy one and people shy away from that." Practitioners were no more enthusiastic. In 2006, Dr. Cardoso asked the European Breast Cancer conference, a top annual gathering of breast cancer specialists, to use the conference to develop consensus guidelines for MBC. "Research had proven that developing and applying treatment guidelines had improved survival for early breast cancer patients. I was convinced if we did the same for metastatic breast cancer, we could improve survival there as well,” she says. But all she could manage was one session devoted to that issue. Nobody expected it to be very well-attended," Dr. Cardoso recalls. "But even though it was on the last day, there were more than a thousand people in the room. There was a real need for guidance because physicians were also lost on how best to manage this disease."

Since then, Dr. Cardoso’s ongoing determination has ushered in major changes in MBC treatment. The Advanced Breast Cancer conference, which she started in 2011 with the European School of Oncology, draws more than a thousand people every other year and issues gold-standard global guidelines for treatment and support. "In the absence of a cure, quality of life is one of the principal goals," says Dr. Cardoso. One logical consequence of this guideline: aggressive treatments are inappropriate for MBC patients, not only because they don’t provide a survival advantage but also because they decrease patients’ quality of life. Recently, Dr. Cardoso says she’s seen an increase in the number of MBC-only information sources, including the Metastatic Breast Cancer Network, Metavivor and AdvancedBC.org. And there’s been progress in the advocacy and support community, including adapting the support-group concept to webinars and getaway weekends where MBC patients can discuss their concerns openly with fellow patients. Still, she believes, there is much more to be done. In many places, MBC remains a taboo topic among both physicians and the general public."But I think we are getting closer to a world in which these patients don’t feel forgotten," says Dr. Cardoso. "If we keep on developing and updating the guidelines, driving the studies and providing the data, little by little people’s minds will change."