Cancer is a multi-partner issue and certainly reaches way beyond just medicine. It affects people in all life stages, also in the most active part of the population, and it affects a person throughout their life. Even after treatment is completed, the risk of recurrence and secondary disease remains, but the point is that cancer is now also a chronic disease that can be cured and can have much less health risk associated compared to a non-malignant but unregulated chronic disease – this was just one of many messages of this year's 2nd Conference Living with Cancer after Cancer - Europe's Beating Cancer Plan (EBCP) in Practice, summarized by the event’s chairman dr. Tit Albreht, epidemiologist, head of the iPAAC Joint Action.

The conference took place at the Medical Chamber of Slovenia in Ljubljana, co-hosted by OnkoNet, the umbrella association of Slovenian cancer patient’s organizations, and Forum. At this year's conference, speakers highlighted two very important topics from the EBCP - the possibility of expanding existing screening programs in Slovenia and the «right to be forgotten». Mag. Barbara Stegel, Secretary General of Forum pointed out that "a period after treatment is completed is a period we are witnessing due to progress in diagnostics and treatment – all this progress consequently puts more and more patients in the role of cured people and puts the society as a whole in front of a growing challenge on how to help this growing group of people to live normally and without discrimination. "

Slovenia has been among one of the leading countries in Europe in cancer treatment ever since the first EU Presidency 14 years ago, when our country made cancer treatment one of its central priorities and continued to do also after the Presidency, said dr. Vesna Kerstin Petrič, head of Public Health Directorate at the Ministry of Health.

In the first part, the conference speakers considered scientific and other basis for extending screening programs to lung and prostate cancer. Prof. dr. Harry J. de Koning, an epidemiologist at Erasmus University in Rotterdam, who, as a member of SAPEA, said that all the data, research and models that have been done so far provide a solid base for extending screening to lung and prostate cancers. "We have more than enough evidence that population-based screening programs for early detection of cancer save lives and reduce both the social and individual burden of cancer across the EU. In recent months, scientists have been actively discussing the relevance and usefulness of expanding screening programs for lung, prostate, esophageal and gastric cancer. "

At the round table that followed, Sonja Tomšič, national coordinator of the National Cancer Control Program for the period 2022-2026, said “our existing screening programs are very good and even some developed countries are lagging behind. If we want any screening program to be successful and give the desired result the response rate should be at least 70%."

Dr. Urška Ivanuš, head of National commission for screening programs, added that despite the desire for screening for as many cancers as possible, not every cancer is suitable for screening. “Even if it has the potential for screening, the obstacle may be that we simply do not have suitable technologies to do so. A typical example is ovarian cancer. However, there are clear scientific and professional criteria for any screening program, which must be met in order for the disease to be included in the screening program, otherwise we risk doing more harm than good. "

Screening for lung cancer would reduce mortality by a quarter

When we talk about the need for introducing a screening program for lung cancer, the basic data is clear and obvious. Oncologist Martina Vrankar, head of the Lung Cancer Council at the Oncology Institute, stated “there is 1,500 newly diagnosed patients with lung cancer every year while as many as 1,200 die from it. About half of the patients already have a metastatic form at the time of diagnosis, so their disease is incurable, despite remarkable progress and innovations in the treatment of lung cancer. According to the latest data from the Slovene cancer registry, the survival rate of patients is around 20 percent. Survival will improve, but we seem to have reached a certain limit, and survival rate is improving very slowly. Patients who are diagnosed at earlier stages have a survival rate of 60 to 90 percent, depending on the stage, so data shows that screening would reduce mortality from this cancer by as much as 24 percent. "

As smoking remains the leading cause of lung cancer this population group will also be targeted for the screening program, however the key question is how to reach smokers. In this context dr. Aleš Rozman, director of the University Clinic for Lung Diseases Golnik, suggested that Centers for Health Promotion and reference clinics, which are very successful at the primary level, could also include a screening questionnaire for selecting patients with higher risk of lung cancer that would be later invited to a screening program. Special attention to the male part of the population is required, since men's response to prevention programs is traditionally worse compared to women. While smoking in men is declining, it is increasing in women, which will certainly be reflected in the number of new cases per year for a few more years. This brings us back to the issue of prevention."

Screening for prostate cancer and issues to consider

The story of prostate cancer is different. For years, there has been so-called opportunistic screening, which is not organized at the national level. Urologist Tomaž Smrkolj from the University Medical Center Ljubljana pointed out that no one benefits from unbridled opportunistic screening, only unnecessary panic is created with patients. It is thus crucial to carefully select and address men, for whom screening would be beneficial. Age is the leading cause of the prostate cancer however it does not cause problems with the majority of men. That makes it even more important to sensibly select only men with increased risk of developing aggressive forms of prostate cancer, that calls for urgent treatment."

The right to be forgotten - a social contract

Cancer has long been considered a death sentence and the main goal of treatment was to prolong the survival of patients as much as possible. However, due to screening programs, better diagnostics and new and very effective treatments, more and more cancers are slowly turning into manageable chronic diseases that can also be cured. All this progress has on the other side created a growing group of people who have encountered cancer and survived and when they want to return to normal life, they often encounter various obstacles due to their previous diagnosis. That is why the so-called right to be forgotten is increasingly being talked about across the EU. Dr. Francoise Munier, former director of the European Organization for Research and Treatment for Cancer (EORTC), explained “a cured cancer patient should not be discriminated against just because he or she once had cancer. It is important that these issues are addressed at EU level, as it has already happened in the Benelux countries and France, with Italy, Romania and Portugal, Ireland and Cyprus soon to follow. In any case, the goal is to make recommendations for the entire EU by 2032. "

According to the experience of Slovene cancer survivors, the so-called economic toxicity is not such a major issue, but rather other, more subtle forms of discrimination, especially on the employment market, pointed out prof. dr. Metoda Dodič Fikfak, head of the Clinical Institute of Occupational, Traffic and Sports Medicine.

And what do patients think? Prof. dr. Jaka Cepec said that from the patient's point of view things look rather simple, "We must just find someone who will take the paper, write down those eight points and get the thing through the parliament. All of us who are aware of what the right to be forgotten is about, all are unanimous that this needs to be regulated at the system level and no one opposes the idea. However, those who should be implementing it systemically do not have enough knowledge about this issue or are not interested in it."

At the end of the round table, MP Iva Dimic, said that she alone, even as an MP, does not have enough power to legalize the right to be forgotten, but added "I am persistent since I know the disease first hand and I am well aware of all problems we have heard about today. That is also the reason we will once again try to re-establish the subcommittee on cancer at the National Assembly and try to ensure that discrimination against cancer survivors is legally prevented as soon as possible."