A Room of Their Own: Portuguese MBC Patients Get a Forum
PATIENT PERSPECTIVE

A breast-cancer support and information group in Portugal will address metastatic breast-cancer issues, hoping to help MBC patients make the most of their time.

 

Moreover, she says, "people face it in a much more positive way than you can ever imagine. They can resolve open issues, direct decisions regarding their family, and structure their care according to their prognosis. For all that, you need to have the information." Now, thanks to Mama Help Advanced, Portuguese women with MBC will have access to the information they need to make the most of their lives.

In 2011, it became clear to Portuguese breast surgeon Maria João Cardoso that breast-cancer patients needed opportunities to discuss their disease, beyond the time allotted them in brief clinical appointments. The Porto native also felt it was crucial that Portuguese patients – many of whom learned English in school but don’t use it in everyday life – be able to learn more about their disease in their own language. So Dr. Cardoso founded Portugal’s first breast-cancer support and information center, called Mama Help. Now in its fifth year, Mama Help holds monthly information sessions at its Porto headquarters and in the capital city of Lisbon. Its Portuguese-language website includes schedules for the popular monthly talks as well as plain-language summaries of relevant medical news. The group has 1,000 paying members and a Facebook page with more than 5,500 fans. In five years, Mama Help has become a crucial source of information and support for Portuguese women with breast cancer.

But Dr. Cardoso realized recently that more was needed. "At the end of our sessions," she says, "metastatic breast cancer patients were always asking, ‘What about us? We are different.’" Although Dr. Cardoso believes breast cancer is a continuum and many issues - such as nutrition and lifestyle - are relevant for all patients, she came to see that MBC patients have concerns requiring specific attention. "The message that comes with early-stage breast cancer is survivorship. The pink idea, you know?" she says. "But when the cancer comes back, you don’t have a club. You don’t have anywhere to discuss death, or how you’re going to manage the disease with your family." Determined to give Portuguese MBC patients a forum, Dr. Cardoso applied for and received 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. With the funding, Dr. Cardoso is expanding the Mama Help website to include a Mama Help Advanced section focused on MBC, including a map of national clinical trials, 26 brochures about MBC-specific issues, and links to international MBC organizations. The lecture series will also expand to include up to 20 sessions on MBC-specific topics.

The need for such a forum was reinforced during the first MBC session, called "Metastatic Breast Cancer: What It Is and How to Deal With It," held in Lisbon in February. About 100 people attended. Dr. Fatima Cardoso, Medical Oncologist, Clinical Director of the Breast Unit, and a leading expert on MBC, noted that the median survival time after an MBC diagnosis is three years. When the session ended, the two doctors were flooded with questions from attendees who, despite having been diagnosed with MBC, didn’t have this basic survival information. "In medical schools, we don’t have communication training," says Dr. Cardoso, by way of explanation. "One of the most difficult things you can do is give another human being the information that their life span is likely to be shorter than they expected." But that, she notes, is exactly what MBC patients need to know.