Ovarian cancer, concrete help from patients

Two years after being diagnosed with ovarian cancer, Sandra Balboni founded the Loto association to raise awareness of a disease that was talked about too little. On the occasion of the tenth birthday of the association we interviewed the president

President Balboni, how has the scenario of ovarian cancer changed in recent years?

In 75% of cases the diagnosis comes when the disease is already in an advanced stage, but today, thanks to research, we have innovative drugs available, PARP inhibitors, which are created for women with the BRCA1-2 genetic mutation but which then evolve even for non-mutated patients. New therapies have made it possible to achieve better survival rates.

How does the association work?

The Loto family is characterized by harmony and cohesion, a claim that I always use is “simplicity but concreteness”. Being in the area is essential to be closer to patients and their families.
We organize moments of confrontation between patients who have had or are facing the disease, this helps them feel less alone, have support and share hope. We try to take care of people, who are not just patients, by offering massages, wigs, physical activity and support groups. We also provide assistance from a practical point of view with support for exemptions, disabilities, etc. Every year we organize a cruise with the patients, because sometimes even a little levity can help.
On the communication front, informing and raising awareness is certainly one of the main objectives for which Loto is working because an improvement in communication processes is the first weapon of prevention. Knowing the symptoms, listening to each other more, being aware and having regular checks: these are the messages we try to communicate. There is certainly no lack of support for research, we have funded numerous scholarships for sonographers.

What communication projects have you undertaken?

Thanks to the information work, the patients who have joined recognize that they have greater awareness of what they are facing, especially on new therapeutic opportunities, but also through their involvement in those activities that can help them during the treatment process, both psychologically and physically. This has a major effect on quality of life and the course of the disease. We have involved all the pharmacies in Italy associated with Federfarma to allow the pharmacy to become a privileged contact who can provide information to better understand the pathology and its symptoms. We also carry out company workshops, many companies led by women or with a prevalence of female staff ask us to go and talk about the small, medium and large prevention activities that can be achieved through knowledge.

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What are Loto’s goals for the future?

As an association, Loto wishes to obtain an increasingly active participation in institutional tables in order to be able to significantly influence improvement paths. The aspect that is, on the other hand, little controlled to date is the active role of the patient in the process of his own treatment. The patient is faced with choices made correctly with the support of multidisciplinary teams, who however sometimes tend to want to find a cure without evaluating what consequences this cure will have on the quality of life.
The Loto Care Center is one of the answers that are taking shape: with the collaboration of the Agostino Gemelli Foundation University Hospital in Rome, Loto is trying to give patients the integrated medicine support they need, and together with the Sant’Orsola Hospital in Bologna, it will launched an acupuncture project as therapeutic support.