Like a label that sticks and closes the doors to a ‘normal’ life. This is what the many people who have recovered from a tumor feel on them. In Italy there are about one million and despite being clinically cured they are not from a social point of view because they face obstacles that prevent them from resuming a normal life after the termination of anticancer treatments: they are discriminated against in accessing financial services, bank loans or when they ask to take out mortgages or insurance policies. We need rules that allow them a real and effective return to life after cancer, on a par with healthy people. It is the so-called ‘right to be forgotten’ for which a cancer patient should not be forced to declare the previous pathology, after a certain period of time has elapsed from the diagnosis and the conclusion of the treatments. The request comes from oncologists and patients at a press conference in Rome at the Chamber of Deputies for the presentation of the book “Healed and Chronic. Clinical Oncology Manual “ (edited by Armando Santoro, Antonella Surbone, Paolo Tralongo, ed. Edisciences).
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Patients recovered
There are 3.6 million citizens in Italy who live after being diagnosed with cancer. 27%, about one million people, can be considered cured because they have left the disease behind and do not need other treatments. “The healed have the same life expectancy as the general population of the same sex and age – he says Paolo Tralongo, Director of Medical Oncology, Umberto I Hospital, Syracuse. “For this a new categorization of patients is needed. As a result of improved screening programs, advances in therapies and an aging population, a long-term life expectancy is increasingly common in the journey of people who have been diagnosed with cancer ”.
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A question (also) of language
The cultural revolution also passes through the language used. “The term ‘survivor’ in Anglo-Saxon culture is characterized by a positive connotation, related to resilience – he explains Giordano Beretta, president of the Aiom Foundation. “In other countries, however, it is often considered an unwelcome label, because it associates the person’s identity with the disease. Just like anticancer treatments that are increasingly targeted at patient subgroups, so too long-life interventions need to be customized in clinical practice. Many patients, after a certain number of years from diagnosis, consider themselves cured and want to be declared so also by their oncologists. Nonetheless, some clinicians are still reluctant to apply the term ‘cured’, fearing that hopes may be raised, preferring expressions such as ‘no evidence of disease’ or ‘remission’, whose resonance is different for patients and professionals. “
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A new category of patients
Therefore, oncologists today are faced with a great cultural challenge because more and more patients today have the opportunity to heal or live long and rightly claim the right to return to a dignified social context and quality of life. “In the transition towards a culture of oncology in which cancer is considered a chronic disease – continues Tralongo – there is a need for clarity on the similarities and differences between all long-term cancer patients. This allows for their new categorization, which in turn can provide clear support for care based on the risk of developmental recovery and the development of side effects of long-term therapies, an improvement in follow-up and the elaboration of specific recommendations and of surveillance guidelines “.
The example of other countries
France was the first country to establish by law that people with a previous cancer diagnosis, ten years after the end of treatment or five years for those who have had cancer before the age of majority, are not required to inform insurers or agencies. loan on their previous illness. To date, after France, Belgium, Luxembourg, Holland and more recently Portugal have adopted a similar discipline, but other countries are also facing this problem. “Under the broad definition of ‘survivors’ of cancer, we now include patients living with chronic malignancies characterized by alternating remission and relapse; those whose cancer progresses slowly, often accompanied by an acceptable quality of life; those who, after years of disease absence, can be declared cured and those who are in clinical remission for long periods of time or for life – explains Armando Santoro, director Humanitas Cancer Center of the Humanitas Irccs Clinical Institute, Rozzano (Milan).
Distinguish based on the tumor
According to oncologists, a new categorization is needed, less rigid than that adopted in France, considering the possible evolution of each tumor. “The time needed to reach the same life expectancy of the general population and to define the person cured, in fact, varies in relation to the different neoplasms and is less than 5 years for thyroid cancer and less than a decade for that of the colon and melanoma ”, continues Santoro. “For some frequent cancers, such as those of the breast and prostate, an excess risk of the disease returning, although small, remains very long, for over 20 years. Even for people with bladder or kidney cancers, non-Hodgkin’s lymphomas (particularly large B-cell or follicular lymphomas), myelomas and leukemias, especially for chronic variants, an excess risk compared to the general population persists for over 15 years after diagnosis “. In Italy, in 2020, 377 thousand new cases of cancer were estimated.
A position paper on survivorship care
Today, many people cured of cancer, especially young people, are denied access to financial products, such as bank loans and mortgages, or insurance or, in the best of cases, benefit from them with tariff increases or partial exclusion clauses of insurance risk, even decades after completing the therapeutic process. Even the planning of life is subjected to discrimination, starting with adoptive parenting. In the coming months, Alleanza Contro il Cancro, together with all the oncological Irccs and with Aiom (Italian Association of Medical Oncology) and Aimac, will publish a position paper on the Italian model on survivorship care and on the reasons that must be at the basis of the legislative recognition of the right to oblivion of people cured of cancer, a prerequisite for breaking down the stigma of cancer equals death.
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