Italian patients with advanced breast cancer in search of information

Breast cancer is the most widespread and frequent type of cancer in Italy, with new diagnoses amounting to over 55,000 annually. In total, 834,000 women were living with a breast cancer diagnosis in Italy in 2020. [Shutterstock/Jo Panuwat D]

This article is part of our special report Metastatic Breast Cancer: Still a lot to be done.

Read the article also in Italian.

Despite efforts to raise awareness by the authorities, patients with metastatic breast cancer in Italy are still struggling to understand what options they have and often lose precious time trying to identify the latest available treatments.

“Italy still lacks awareness of how far treatments for metastatic breast cancer (MBC) have come,” Dr Rossana Berardi, president of the Women for Oncology, told EURACTIV Italy, adding there was still “work to do in communicating medical and scientific progress in Italy”.

“I do not feel political or social resistance to this, but many are still not fully aware of the consistent results that can be obtained from new kinds of therapies in MBC patients, especially those with a biological profile that benefits from hormonal therapies or from biomolecular target drugs,” she said.

Berardi’s call for a better communication strategy mirrors previous calls from experts in the country.

Earlier this year, professor Adriana Bonifacino, president of IncontraDonna Onlus, an NGO helping breast cancer patients, stated that “an effective and scientifically appropriate language” is central to the scientific literacy process.

“The ultimate goal is to make women understand how it is possible to live with the disease,” Bonifacino said.

“Plenty of communication efforts have been targeted at patients with non-metastatic forms of breast cancer – campaigns aimed at the majority of women who manage to achieve a cure. For this reason, metastatic patients often report being left alone and at the mercy of unclear, confused and in any case not comforting information,” she added.

Breast cancer is the most widespread and frequent type of cancer in Italy, with new diagnoses amounting to more than 55,000 annually. In total, 834,000 women lived with a breast cancer diagnosis in Italy in 2020.

Among them, more than 37,000 women had metastatic breast cancer, an advanced stage of cancer where the disease spreads to other parts of the body, usually the liver, brain, bones, or lungs. The past 30 years have seen a steady decline in mortality and an extension of the life of diagnosed women.

Thanks to the latest advances in science and medicine, MBC is now a treatable disease, although not yet curable,  meaning that it can be kept under control for years with therapies, but patients still have to live with the fact that metastases tend to reappear.

MBC patients must therefore undergo frequent checks, since any new symptom can be a reason to re-evaluate the therapy. Still, the medical field has made some significant progress in allowing MBC patients a long, quality life – especially when the disease is diagnosed early on.

Patients are confused

But MBC patients in Italy often report feeling confused and disoriented in trying to navigate information and options available to them, to the point that, by the time they have identified the signs, their disease is at an irreversible stage.

The government instituted 13 October as the National MBC Awareness Day, starting in 2021, and a few initiatives to place focus on MBC patients’ quality of life have been launched on a regional level. For example, the Marche region is set to launch a regional programme for the reintegration of MBC patients in the workplace.

National training sessions for journalists to cover MBC in an informed and helpful way have also been held. Since 2016, “Pink Room” initiatives have provided patients with free medical consultations on every aspect of living with the diagnosis, from nutrition to rehabilitation, and supplementary treatments ranging from yoga courses to mental coaches.

The country has also seen a strong rise in the number of specialised Breast Units, going from 84 in 2012 to 173 in 2020.

According to an agreement between the central government and the regions, each region must have a multidisciplinary breast care centre for every 250,000 inhabitants; each centre must treat at least 150 new cases every year and must have at least a core team of six dedicated professionals, radiologist, surgeon, pathologist, oncologist, radiotherapist, data manager.

Almost 50% of all Breast Units are in the north of the country, while 28.8% are in the centre and 25.6% in the south.

On the downside, this year, a survey on mental health services in 44 Breast Units showed that only 17% of patients benefit from psychological support.

Part of the reason is a lack of dedicated and qualified personnel to manage this delicate aspect of cancer care, with 30% of health professionals working on this in the Breast Units being made up of part-time consultants, doctoral students, postgraduates and trainees.

[Edited by Sarantis Michalopoulos/Zoran Radosavljevic]

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