The first cancer organisations In the early days of independent Finland, the main focus of government and private charities in the health sector was on tuberculosis, which killed 9,000 Finns a year in the early 1920s. The disease was not only a public health problem, but also a national economic problem, as it killed people of working age in particular. Concentration on the fight against tuberculosis meant that treatment of cancer patients was left behind. There was no hospital specialising in cancer in the country until the radiotherapy clinic at Helsinki General Hospital opened in 1936. When the eight doctors on the committee set up by the Finnish Medical Association met at the State House on 18 March 1936 to plan the objectives for an association against cancer, they were aware that cancer was not only a medical problem but also a social and societal one. The majority of cancer patients received only surgical treatment, and that too inadequately, and the poor hardly any at all. Therefore, the organisation that was to be set up had to aim at combating cancer on a broad scale. The work of the CSF, founded on 21 November 1936, got off to a good start when it was able to acquire 5.69 grams of radium for the treatment of cancer patients, thanks to a donation of five million marks (just over 200 000 euros) from Active State Councillor Waldemar von Frenckell. Most of the radium was leased to the state, which used it in the ‘radium cannon’ of the Radiotherapy Clinic. For a long time, the rent was the basis of the CSF’s finances, along with membership fees. The opening of the Radiotherapy Clinic did little to improve the cancer situation in Finland. This was noted by Sakari Mustakallio, an associate professor of medical radiology, who in an article published in 1938 suggested that a thousand or so more people died of cancer in Finland than the 4 000 reported by official statistics. This was partly due to an increase in the average age of Finns, as cancer was mainly a disease of middle and old age. Mustakallio sought to counter the common perception that cancer was an incurable, inevitably fatal disease. He aimed to show that cancer could be controlled and vanquished. In this task he was supported by Arno Saxén, Professor of Pathology, elected CSF chair in 1943, who also paid great attention to educational work. The CSF, led by eminent figures, was unable to reform cancer work significantly due to its limited resources, and was criticised for being too ineffective, especially by young doctors. They decided to set up a foundation to create the conditions for early detection of cancer. So on 12 February 1948, the Cancer Foundation was born, with the aim of fighting cancer through donations. To the disappointment of the founders, the donations received amidst the post-war reconstruction were small. The Cancer Foundation began to plan a fundraising campaign to secure its finances. To get a united front behind the fundraiser, it also presented the idea to the CSF. A consensus was quickly reached and the two organisations decided to focus on a major fundraising event in 1950 to raise money for cancer prevention and education. The work went so well that in 1952 the two organisations agreed to work together on a permanent basis. An advisory board was set up to carry out the fundraising, with M.Phil Niilo Voipio as its secretary. The collection was a great success. Although there were several large charity collections going on in the country at the same time, the result was almost FIM 42.5 million. When the next year’s follow-up collection was able to add more than FIM 17.5 million, the total raised was around FIM 60 million (about EUR 2.1 million). The funds raised were used to establish a radium nursing home with cancer clinics in the Taka-Töölö district of Helsinki, to purchase equipment for radiotherapy at the Turku Provincial Hospital and to prepare for the establishment of a radium nursing home in Turku. The successful fundraising also made it possible to send Niilo Voipio, secretary of the advisory board, on a trip to Norway, Sweden and Denmark to learn about cancer work in these countries. The hope was to find new solutions to improve cancer work. And such a solution was found – cancer statistics, although it was nothing new in Finland. Plans to start producing cancer statistics From the outset, the development of cancer research had been hampered by a lack of data on cancer incidence. Although as early as 1909 Gustaf Heinricius had proposed that cancer statistics should be compiled in Finland, the idea only became a reality with the foundation of the CSF in 1935. At that time, Yrjö Seuderling proposed that the future association should undertake a comprehensive collection of cancer-related data. Due to financial difficulties, the CSF was so slow to get started that it was not until spring 1938 that progress was made. The preparation of the statistics was entrusted to the secretary of the association, A. Omar Arho and Sakari Mustakallio. The men were able to act quickly, as Mustakallio had understood from his work at the Radiotherapy Clinic the importance of accurate statistics and monitoring of cancer patients. He had been familiar with the development of patient charts since 1936 and was therefore able to design a comprehensive questionnaire. After Arho and Mustakallio advocated the introduction of cancer statistics, the CSF board approved the proposal in June 1938. A budget was set aside for the collection work, including the taking of biopsies from patients’ tumours, and once the medical board had approved the plan, the collection began in September 1938. The CSF’s board decided to pay for the examination of biopsies taken from indigent patients, which was considered important both for the treatment of patients and for the reliability of the data. The work started promisingly, as by early October 1939 more than 3 500 cases of cancer had been reported. The collection was then halted by the Winter War, but work continued for some months after the end of the war, so that by the end of 1940 a total of 6 540 cancer cases had been collected. After the outbreak of the Second World War, the study of cancer biopsies continued intermittently during the war years and then until the end of 1949. The data collected on cancer was processed until 1948, when Helmi Jaakkimainen, a doctor appointed as secretary of the CSF visited the Cancer Registry that had been set up in Denmark six years earlier. Jaakikainen’s description of the registry’s activities and the calculations based on it showed that the CSF did not have the means to set up a similar registry. The CSF tried to get insurance companies to finance the project, but they did not help. The organisation had no choice but to wait for a better time, which came in 1951 thanks to a fundraising campaign. Formation of the Cancer Registry Arno Saxén, the CSF Chair, was the strongest advocate for initiating cancer statistics. Following Jaakikainen’s report on his trip to Denmark, he was convinced that the Danish Cancer Registry offered a starting point for statistical work in Finland. He therefore urged Niilo Voipio, during his trip to the Nordic countries in the autumn of 1951, to study the Danish Cancer Registry in particular. The information gathered by Voipio provided Saxén with the basis for pursuing the matter further. Saxén revealed his deep concern about the cancer situation at the first meeting of the Committee for the Prevention of Cancer, set up by the government on the initiative of the CSF and to which he had been invited as CSF Chair, in Turku on 14 May 1952. At the meeting he reiterated the view he had already expressed earlier that the treatment of cancer in Finland had reached “the stage of a complete scandal”. Yet it was a completely false notion that cancer would always lead to death. This misconception, he said, was partly due to the fact that there were far too few places for radiotherapy in Finland. Three radiotherapy clinics should be set up quickly in Finland: in Helsinki, Turku and perhaps Oulu. Realising that it was pointless to expect quick solutions from the state, Saxén decided to approach the problem from the angle of cancer education and prevention. The CSF was currently looking at how best to use the funds raised by the fundraising campaign, so cancer statistics would be a good option. He therefore prepared carefully for the CSF board meeting of 3 June 1952, which was also attended by members of the Cancer Prevention Committee, Professors Sakari Mustakallio, Lauri Kalaja and Ivar Wallgren. In order to give his proposal as much weight as possible, Saxén asked Helmi Jaakkimaisen to help him, who had handed over the duties of secretary to Niilo Voipio, who had been appointed as the association’s ombudsman, at the beginning of the year and had become its enlightenment director. He also asked his son Erkki Saxén, who had just returned from the United States and was working as a postdoctoral researcher at the US National Cancer Institute (NCI) , to prepare a proposal for the meeting on the organisation of cancer statistics. Arno Saxén started the meeting by presenting the population-wide cancer registries established in Denmark, Norway and some US states, which provided a good basis for cancer research and cancer control in general. He also drew attention to the international importance of establishing a cancer registry, which would enable Finland to participate in the geographical mapping of cancer diseases sought by the International Union against Cancer (UICC). This was a good move, as appealing to the fact that Finnish research could attain internationally significant achievements has often made it easier to obtain funding. Saxén was followed by Jaakkimainen, who detailed the importance of cancer statistics. He handed out copies of the written justification for the appointment of a statistical committee, a summary of the results of the cancer statistics started in 1939 and a memorandum on cancer research prepared by Dr Erkki Saxén. According to Jaakkimaisen, it would be of great importance for awareness-raising work if, in addition to the mortality figures, it were possible to present the following data: number of people with cancer difference between the number of cancer cases and deaths the increase in this gap This would demonstrate that a cancer diagnosis is not a death sentence, but that cancer detected early is curable. Jaakikainen said that the quick start of the project would be helped by the possibility of involving Arno Saxén’s son Erkki, who had written a memorandum on how cancer should be researched in Finland. According to Saxén, tackling cancer called for research into the prevalence and forms of cancer based on answers to a carefully designed questionnaire. As the survey would use modern statistical methods and scientific nomenclature, it would also be of considerable international importance. The fact that Erkki Saxén had a template of the questionnaire, or patient card, ready is a sign of his father’s encouragement. In addition to basic information about the individual, it asked only the most important questions, such as the type of cancer, the location of the primary tumour, how far the cancer had spread when it was diagnosed and how it had been diagnosed. By keeping the list of questions short, Saxén wanted to ensure that the card was easy to fill in and return. Saxén’s patient card was much the same as Sakari Mustakallio’s 1938 questionnaire. This shows that Finland would have been at the very forefront of cancer statistics in the world had the Second World War not delayed its start by more than a decade. After noting that the project was fully supported by Atle M. Mali, Head of the general department of the National Board of Health (forerunner of the present-day Finnish Institute for Health and Welfare, THL) and Aarre Tunkelo, Director of the population statistics department of the Central Office of Statistics (now known as Statistics Finland), Jaakkimainen proposed that the government set up a committee to prepare the matter and carry out statistical research. The board decided to support the proposal and elected Mali, Tunkelo, Jaakkimainen, Erkki Saxén and Viljo Turtola as members of the Cancer Registry Committee. Its immediate task was to compile the necessary material and guidelines for the collection of data and to present an estimate of the costs involved. Time was short, as data collection was to begin as early as the beginning of 1953. During the summer, the committee prepared the requested assessment, using Johannes Clemmesen, founder of the Danish Cancer Registry, as an expert. It decided to propose a budget of FIM 2 000 000, which would at least get the work started. The CSF board, chaired by Arno Saxén, discussed the evaluation at its meeting on 4 September 1952 . It agreed with Clemmesen that the statistics should obviously be compiled over a two-year period to reduce the possibility of errors but granted the committee the budget it had proposed. The Cancer Registry was thus effectively established. The decision was significant, as Finland obtained a cancer registry only 10 years after Denmark, the pioneer country in cancer registration, one year later than Norway and six years earlier than Sweden. The most important thing about the establishment of the registry, however, was that the CSF gained a fourth dimension to its cancer work: cancer statistics, in addition to patient care development, cancer research and cancer education. The accumulating data on cancers provided national medical authorities and politicians with accurate information on the current cancer situation. This information enabled authorities to plan the number of hospital places needed for cancer patients, the equipment needed to treat them and the medical staff needed in different regions. This information also allowed them to make estimates of how the cancer situation would develop in the future. Within a few months, Arno Saxén had completed the work that Sakari Mustakallio had started in 1938. He had found the person who was to lead the work, and who was to head the Cancer Registry for the next 36 years. In that time he had only a few months to live, for he died unexpectedly on 19 November 1952. Saxén had felt duty bound to support the work of the CSF, a commitment he accomplished to the full.