Rare cancers and hereditary cancer syndromes
Each year approximately 22% of newly diagnosed cancer patients, or 7000 people, are diagnosed with a rare cancer in Finland. Rare cancers also include rare subtypes of common cancers. There are many challenges associated with rare cancers:
- Diagnostic tools may be inadequate or there may be a delay in getting a diagnosis because primary care physicians do not have sufficient knowledge of rare cancers.
- Not all healthcare facilities have the pathology expertise required to confirm the correct diagnosis.
- A significant number of patients see many physicians before getting the correct diagnosis.
- Many patients are misdiagnosed one or several times before the correct diagnosis.
- It is also more difficult for patients with rare cancer to find information about their condition, or there is no information available.
The rare cancers project
Launched in 2022, the rare cancers project is a national project by FICAN South and FICAN Mid to develop treatment pathways and medical treatment for patients with rare cancer.
The project brings together FICAN’s regional cancer centers, cancer specialists (e.g. geneticists, oncologists, gastrointestinal surgeons, pathologists), cancer organization representatives, and patients.
In addition, members of HUS’s rare cancers and hereditary syndromes customer panel participate in the project as necessary (more information below) to ensure the planned measures and changes are user oriented.
The project will continue until the end of 2026.
Objectives and themes
The aim of the project is to develop an operating model that meets the needs and requirements of users – both patients and professionals – and that improves the quality of treatment of rare cancers, treatment outcomes, and patient experiences. The project has three main components: treatment pathways and patient experiences, medical treatment and availability of medicines, and hereditary cancer syndromes.
What has been done so far?
In summer 2022, FICAN South and the Association of Cancer Patients in Finland conducted a Webropol survey (n=270) for people with a rare cancer to obtain information about the problems patients have encountered along the treatment pathway. After this, the project team analyzed the survey responses and developed solutions to the problems and issues, such as producing information for professionals and patients. In addition, ERN EURACAN (adult solid tumors) subgroups have been established. The subgroups have clinical representatives from HUS and Tampere University Hospital. The working groups discuss challenging patient cases and develop treatment plans together. In addition, a national training event for both professionals and patients has been held once a year since 2023.
In May 2024, a website on rare cancers and hereditary cancer syndromes was published in Cancer House of the Health Village portal, which contains an extensive information collection for both patients and their families and friends. At the same time, the project team started to work together with cancer organizations for purposes such as combining communications.
Training
The ERN EURACAN and GENTURIS training day organized by FICAN South and FICAN Mid is intended for professionals. The event is held annually in May at Hilton Helsinki Kalastajatorppa. The next training event will take place on Friday May 23, 2025.
For patients, an event focusing on rare cancers and hereditary cancer syndromes known as Patient’s Day is held annually in November. The next Patient’s Day will take place on November 13, 2025, at the Meilahti Bridge Hospital, and attendees are welcome to participate in the event in person and via a remote connection.
Research and customer panel on rare cancers
HUS has a research and customer panel on rare cancers. The panel members are adults with rare cancer or hereditary cancer syndrome. The topics discussed at the panel meetings include challenges associated with the condition and how the services could be developed to better meet the needs of the patients and their loved ones.
In addition to the panel members, the meetings are also attended by healthcare professionals. The meetings are conducted remotely via Teams and they are held 4–5 times a year. Applications to join the panel can be submitted online using the application from on the Customer Involvement website of HUS at https://www.hus.fi/en/about-us/development-hus/customer-involvement
What’s next?
In 2025, the key theme of the project will be medical treatment and the availability of medicines. This is also reflected in the FINPROVE trial, where participants with rare cancers receive investigational medical treatment after exhausting standard treatment options.
Approximately 20 treatment guidelines will be made for hereditary cancer syndromes, which will be published on the Terveysportti portal. PDF versions of the treatment guidelines and links to the guidelines will be published on the FICAN website. In addition, 2025 will see an information sheet produced for people with a rare cancer as well as articles published in academic journals.
Rare cancers and hereditary cancer syndromes on the Health Village portal
More information in Finnish about rare cancers and hereditary cancer syndromes, peer support, and treatment pathways is available in the Cancer House of the Health Village portal: https://www.terveyskyla.fi/syopatalo/harvinaiset-syovat-ja-syopaalttiusoireyhtymat/harvinaiset-syopataudit
Contact
Anne Kairenius
Project Manager
firstname.lastname@hus.fi
Annika Auranen
Person Responsible
Director, FICAN Mid
firstname.lastname@pirha.fi
