patients move

It is a reality that social networks and the Internet accumulate hundreds of hoaxes related to breast cancer and other diseases, but they also serve as a vehicle to contact other patients or associations similar to yours. For Mar Mateos, president of the Patients Association, Las Triples, «Social Networks are our pillar, we have met through the telegram channels, then Instagram arrived, and the rest of social networks. On a personal level I was reluctant to them, however, I have been able to meet wonderful, generous people, friends through the networks that are already family. The La Triples association was founded on March 3, 2022, International Triple Negative Breast Cancer Day, as the first triple negative breast cancer association in Spain. It is made up of women who have gone through or are going through this disease. On the reason for the need to create this association, Mar Mateos states: «When we are diagnosed with triple negative breast cancer, it is inevitable to search for information on the internet. However, the information is scarce and in official sources there is hardly any mention. They are joined by the fact that they were diagnosed in the midst of the Covid-19 crisis «In the midst of a pandemic, given the lack of information, you look for help in other places and look for people who have the same type of tumor as you to share doubts and fears; This is how the groups of breast cancer patients were created on Telegram”, adds Mateos. Triple negative breast cancer is the subtype with the worst prognosis defined by the absence of expression of hormone receptors and HER2. It is estimated that 15% of diagnosed breast cancers are triple negative tumors; In Spain, some 33,000-34,000 cases of breast cancer are diagnosed, and the triple negative can affect some 5,000 women a year in our country, explains Isabel Echavarría, scientific secretary of the Spanish Society of Medical Oncology (SEOM). This type of tumor is generally diagnosed in young women, premenopausal, with an active life, with work and, if they are mothers, with small children. One of the most mentally healthy ways to cope with a diagnosis like this is to talk, share, identify other people who are like you, says Mar Mateos. “In the triple negative chat there was a lot of talk about our needs, such as giving visibility to our type of tumor and demanding specific treatments that, in 2022, we still do not have. In this way, eight women decided to undertake the task of creating a national association that can help other patients”. Urgent Needs The patients with this type of breast cancer, and specifically the members of the Three Triples, detected three urgent needs that they wanted to echo; The most specific request is to facilitate access to innovative medicines that are already approved by the European Medicines Agency (EMA), which, however, are not in Spain. “The most urgent thing is that the government approves the marketing, distribution and administration of medicines already approved by the European Medicines Agency. There are drugs for metastatic triple-negative breast cancer that are already available in the rest of the European countries, but not in Spain,” Mar points out. Secondly, specific treatments are needed for triple-negative breast cancer and triple negative metastatic breast cancer, claims the spokeswoman for the Triples, Mar Mateos. “Now we only have traditional chemotherapy and we call for more targeted research and specific treatments for triple negative. Currently we do not have specific treatments for primary cancer and for patients with metastasis there are two treatments approved by the EMA which, however, are not yet incorporated into the national health system due to the delay in the authorization process for their financing, which is about 15 months to wait. Meanwhile, patients can only access them by “compassionate use” ». Finally, Mateos adds a third claim: “achieve territorial and hospital equity in relation to the accessibility of patients to all treatments against triple negative breast cancer and promote collaboration and integration between care centers, hospitals and research centers. It is essential that innovation and approval reach these patients for whom time is against them soon.” For Rosa Echevarría, from the SEOM, in recent years great progress has been made in this disease, with the development of immunotherapy, which has proven to be effective in a subgroup of these patients, in combination with chemotherapy, both in patients with tumors localized as in advanced disease. To which Mar Mateos clarifies: “The arrival of immunotherapy has opened up new possibilities for us, however, not all patients can access these treatments since most are administered through clinical trials.” And she adds that “in order to materialize this objective, it is necessary to invest in research and streamline the process of marketing a medication. It is useless to invest in research and innovation if the medicine instead of reaching the patient is in a cabinet. Dr. Echevarría adds a new group of drugs as innovations, antibody-conjugated drugs, which have also been shown to increase the survival of patients with advanced triple-negative breast cancer. The impact of having new treatments that not only lengthen or improve the prognosis of these women, but are also better tolerated than the chemotherapies we had until now, is going to be an important improvement in the future of these patients, she assures. Related News Beauty standard No The new technique to reconstruct the areola and the nipple after a mastectomy Araceli Nicolás Fix Nip consists of the implantation of a silicone device that is performed on an outpatient basis For this reason, adds Echevarría, it is necessary, on the one hand , develop innovations that offer solutions and hope to these women, change their prognosis and, for this, it is necessary to collaborate with all the agents involved, since innovation is only useful if it reaches patients quickly. On the other hand, it is a priority to raise awareness about this subtype of breast cancer, for which it is necessary to mobilize and create social awareness around this problem. Las Triples, at the service of its associates or sympathizers Mar Mateos tells us about her hopes for the future as an association: «Our long-term goal is to be able to have a psychological support service with specialized professionals, since we, after all, we are also breast cancer patients. What we can offer now is a support group among equals, where we try to resolve doubts, always based on our experience, and give each other support throughout the process.” “A year ago the association was a dream, today it is a reality. We have a great media reach », she concludes.