Greece’s sprawling geography makes metastatic breast cancer care particularly tricky. A new web database aims to inform and empower patients and caregivers alike.
For metastatic breast cancer patients in Greece, geography can be a challenge. Women living on one of Greece’s many islands or in its mainland villages are typically hours away from expert-care facilities, may have limited access to essential medical information, and often don’t know about nearby support networks - if such networks even exist. Compounding the geographic isolation, particularly in areas where cancer still carries a stigma, MBC patients can "be shy and closed into themselves, because they have the feeling that from the moment they’re diagnosed, that’s it: They’ve failed to beat the disease and their lives have a deadline," says Dr. Helena Linardou, a medical oncologist representing the "Women 4 Oncology-Hellas" organization, a group of women professionals in oncology. "Of course that’s not true," she continues, stressing that medical and psychosocial advances mean many MBC patients live long, fulfilling lives after their diagnosis. "But many women in Greece don’t know that. We need to tell them that their MBC diagnosis doesn’t immediately mean death, and include them in the larger conversation about breast cancer." Women with early breast-cancer diagnoses also need to know that the disease can return, learn its symptoms, and continue their follow-up care and preventative lifestyle, so potential metastasis can be diagnosed promptly and managed.
That’s why the W4O-Hellas joined forces with KEFI, a patient and volunteer association, to create a support network for metastatic breast cancer patients in Greece. Since 2014, W4O-Hellas has been fostering communication and support between women doctors and their female patients, as well as running free-of-charge programs for access to oncology tests and care throughout Greece. Now, W4O-Hellas and KEFI aim to create an online database to inform and educate about MBC issues including treatment and support options. Funded by a grant from the Union for International Cancer Control (UICC) and Pfizer, as part of the Seeding Progress and Resources for the Cancer Community (SPARC) program, work on the database started in December 2015. By June 2016, a rough "oncology map" of Greece, including the locations of public and private medical facilities as well as volunteer, support and advocacy groups, should be online. The platform’s address will be "w4life.gr," meant to evoke "women for life" or "life for women with stage 4 disease." Such a map will be a major accomplishment, because while researchers estimate that some 6,000 Greek women suffer from MBC, no formal registries exist.
After the basic location information’s been mapped, the database organizers plan to run a quality of life survey among women with MBC, to analyse their specific needs, including gaps in medical and support networks. By the summer of 2017, Greek women with MBC, along with their doctors and families, should have access to an interactive web-based database of "everything that’s relevant to MBC patients," says Dr. Linardou, including national and local treatment options, support groups, and clinical trials. Knowledge of and access to such trials is particularly important given Greece’s ongoing financial crisis. "Many centers across Greece now participate in international cancer studies and have access to the latest drugs," says Dr. Linardou. "In a country in crisis, that’s a very big deal. It means MBC patients who are uninsured can get expert care and the latest therapies for their disease."
The project’s coordinating committee reflects its wide scope and includes journalists, health economics advisors, state representatives, and volunteer-group leaders. Project leaders from W40-Hellas include six medical oncologists - Sofia Agelaki, Eleni Galani, Helena Linardou, Zenia Saridaki, Athina Chrstophoulou, and Amanda Psyrri – as well as two KEFI leaders, Zoe Grammatoglou and Elisabeth Psilopoulou. "The SPARC project is a great opportunity to put metastatic breast cancer patients in the picture, so that awareness and advocacy includes these women as well," says Dr. Linardou.