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Breast cancer, what patients ask

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Breast cancer, what patients ask

Take a new photograph of someone with breast cancer. This was done by the “Health: an asset to be defended, a right to be promoted” Group (which brings together 45 associations), within the “In contact” initiative, which includes a series of online questionnaires aimed at patients. Objective of the new fact-finding survey: to highlight the strengths and critical points of taking care of those who are being treated for breast cancer (it is possible to review the event “Breast cancer: information, treatment path and quality of life” at this link).

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There are 223 patients – 99% women and 1% men – who responded to the survey, distributed via the Group’s Facebook page (the sample is quite well distributed throughout the national territory). What emerges? “The first important aspect to underline – he says Annamaria Mancuso, president of Salute Donna ODV and coordinator of the Group – is that on the national territory the care and assistance of these patients is decidedly good, of high quality and widely spread at a regional level. Another significant data is the population’s awareness of breast cancer and regular adherence to mammography screening programs.”

However, there remain unsatisfied needs: first of all the request for an integrated and multidisciplinary approach, which takes into account not only the tumor, but many other aspects linked to the disease and treatments, and the well-being of the person at 360 degrees. The answers then bring to light other problems: communication with doctors considered not to be exhaustive, difficulties in scheduling checks, the need for greater psychological support and more information on the breast centers to turn to. Well, let’s get to the data.

The (updated) numbers of breast cancer by Tiziana Moriconi 12 January 2024

The age of the sample

Most of the participants are over 50 years old. Specifically: almost a third are between 51 and 60, 52% are between 61 and 75, and 5% are over 76. However, there remains around 12% who are under 50: 11% are between 41 and 50 years old and 1% are under 40 years old. Several patients, therefore, are still of reproductive age, as we also know from epidemiology.

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How was breast cancer discovered?

For 4 out of 10 participants the discovery occurred by chance, after feeling a lump during self-examination, while around 6% had noticed changes in the nipple. A quarter (25.6%) discovered it following mammography screening and 8% during family history checks.

At what stage?

In more than 90% of the sample the tumor was discovered in an early stage: in over half of the cases it was less than 2 centimeters without involving the axillary lymph nodes; in a third it was always in the initial stage, but greater than 2 centimeters and with one or more lymph nodes involved; in 11% it was locally advanced and in 3% it was metastatic.

Mammography, if done regularly, can reduce mortality by 66% by Barbara Orrico 01 December 2023

Participation in screening programs and breast examination

Early diagnosis is a topic on which there seems to be great sensitivity: 54% of women declare that they consistently adhere to the organized screening programs offered free of charge by the national health system. However, there remains 12% who have never been reached by a communication on mammography screening and another 11.7% who do not fall within the age groups for which it is offered. 40.8% of the sample undergoes a breast examination once a year and 26% every two years. However, there remains 28.3% of the sample who have never done it, or only rarely. As regards breast self-examination, 43% of the sample does it regularly but over 50% do it rarely or never. “The survey underlines how crucial communication aimed at the general population and patients is – he underlines Nicla La VerdeDirector of the Oncology Unit, ASST Fatebenefratelli Sacco PO Luigi Sacco of Milan – The data also demonstrate how high women’s awareness of this specific neoplasm is, allowing adherence to secondary prevention such as mammographic screening”.

What type of tumor was it?

The most frequent type of breast cancer (46.6%) is hormone receptor (HR) positive, followed by HER2 positive tumor (24.2%) and triple negative tumor (10.3%). It must be said that approximately 19% of the sample was unable to provide this information, a figure which according to the associations highlights a criticality in communication at the time of diagnosis.

Breast cancer: what the biopsy can tell us by Tiziana Moriconi 02 February 2024

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Breast Unit o no?

Half of these patients declare that they were treated in a specialized breast unit, while a third were treated in an oncology department, and 13% in a general surgery department. “In Italy the presence of Breast Units is very high and widespread in a rather widespread manner, certainly available in the hospitals of all large cities – underlined La Verde – The Breast Unit is a highly specialized structure for the diagnosis and treatment of breast cancer breast, which allows patients to be taken care of by a team of different professionals (surgeon, oncologist, radiologist, radiotherapist, pathologist, psycho-oncologist), and guarantees the best standards in terms of surgical and medical treatments”. “The situation has improved a lot compared to years ago, but today it is important to think in terms of Pdta, i.e. Diagnostic Therapeutic Assistance Pathway, which also includes palliative care and other important aspects of care – added Mancuso during the online event – The Pdta is a much broader container than the Breast Unit and into which today’s Breast Unit falls. It is time to combine the two concepts so as not to create confusion in patients.”

What treatments?

Beyond surgery (carried out in this sample by approximately 72% of patients) – the treatments were: hormonal therapy (64%), radiotherapy (approximately 64%), chemotherapy (approximately 45%), target drugs (approximately 11 %) and immunotherapy (approximately 10%). In 65.5% of cases these are oral therapies, in 26% drugs administered intravenously and in 8.5% drugs administered subcutaneously.

Familiarity and genetic testing

Less than 1 in 2 patients reported a family history of breast cancer in first and second degree relatives. The genetic test for BRCA 1 and 2 mutations – which can be prescribed on the basis of very precise criteria, such as young age at diagnosis, strong family history or the presence of male breast cancers in the family – was offered to a third of patients .

Tumors and mutations Jolie, the appeal for a day of awareness by Tiziana Moriconi 15 December 2023

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What patients ask for

As regards the treatment path, the request to be followed by a multi-specialist team stands out to guarantee an integrated approach to the person, a need expressed by almost 4 out of 10 patients. The second need is to be able to count on greater availability of time from doctors (about 3 in 10). This is followed by: greater information on the disease and available therapies (approximately 23%), having psychological support (approximately 21%), greater protection of rights in the workplace and social spheres (approximately 21%), facilitated courses in clinics and day hospitals (approximately 12%) and more information on reference centers (around 7%).

The impact of cancer and treatments

The survey also highlights the impact of the disease on quality of life and psychological well-being. 34% of the sample declared suffering from anxiety or depression, 19% reported sequelae related to the surgery, 17% difficulties in communicating with the oncologist and another 16.6% the absence of a psychological support. Furthermore, 16% had problems managing therapies or checks, in the latter case mainly due to organizational reasons. Finally, inconveniences related to the distance between home and hospital have been reported.

Lung cancer, photography of patients in Italy by Dario Rubino 14 December 2023

In short, there is no shortage of critical issues to work on, Mancuso continues: “We need to expand the offer of genetic tests and screening to other age groups, especially for young subjects with a family history and at greater risk. And we need to think about strengthening the structures, improve organization, procedures for checks, lengthen doctor-patient meeting times, psychological support and pay greater attention to patients’ daily lives, with an eye on rehabilitation and the after-effects of surgery. – he concludes – our Group is committed, through constant dialogue, to providing national and local political decision makers with proposals for feasible solutions that take into account first and foremost the needs of the sick”.

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