Between May and July 2024, the European Cancer Organisation joined forces with leading national oncology experts and organisations representing the 6 tumour types included in the EU screening recommendations (breast, colorectal, cervical, lung, prostate, gastric) to document the experience of individuals involved in cancer screening, whether on the provider or receiver side. The positive and negative anecdotes collected reflect the state of cancer screening implementation across Europe. These powerful narratives are essential to understanding the experience of cancer patients from different demographic backgrounds and understanding how the current practice of performing these screenings can be improved, made more inclusive, effective and efficient.
The survey responses highlight key challenges in breast and prostate cancer screening related to income inequality, geographic location, and - in the case of breast cancer - breast density, which impact early diagnosis and treatment options.
Many respondents who could afford private care avoided potentially fatal delays, while some of those relying on public healthcare experienced life-threatening waits. Rural residents face further barriers with limited access to screening. Most notably, the vast number of testimonials about dense breast tissue underscore gaps in cancer detection, with many tumours remaining hidden in standard mammograms.
Several participants shared stories of being able to afford private healthcare, which saved their lives. One respondent noticed her nipple turning inwards and sought immediate care, but the public health system doctor dismissed the issue as non-urgent. She could afford to seek private treatment, where she insisted on a specific ultrasound angle where she felt discomfort, revealing a large tumour, 2 mm from the chest wall. Another respondent, unable to get quick action from the public health system due to a low PSA score, chose to pay for a private prostatectomy and received prompt treatment. These examples show that wealthier individuals can access quicker, life-saving diagnostics, while others face delays in public health systems, potentially worsening outcomes.
A stark divide exists between those living in urban and rural areas when it comes to screening access. Some participants, especially those in rural areas faced significant barriers, needing to travel long distances or take expensive trips to reach screening facilities. One respondent from a rural area had to advocate for BRCA (BReast CAncer gene) testing based on her family history after being denied locally. It wasn't until she transferred to an urban centre, where she received better care, that she was found to be BRCA2 positive. Meanwhile, mobile screening initiatives in urban settings are proving to be successful, with one respondent noting how convenient and accessible it was to get screened in a supermarket car park. This approach could help increase screening uptake, particularly for people who may have missed screening appointments due to travel difficulties or conflicting commitments.
A large number of responses reported problems with dense breast tissue, a condition that significantly complicates cancer detection. A striking number of respondents stated that mammograms, the standard screening tool, repeatedly failed to detect tumours in dense breasts. One participant had routine mammograms for eight years before an MRI finally revealed cancer in both breasts - lobular cancer in one and ductal in the other. Another respondent had a ‘clear’ mammogram, only to be diagnosed a year later with Stage 4 metastatic invasive lobular carcinoma (ILC). One individual had a 65 mm lobular tumour and an mm macromet in a lymph node that were completely missed by mammography and ultrasound but were detected by an MRI. Respondents expressed frustration at the limitations of mammograms for dense breasts and called for the use of MRIs, which, although more expensive, could detect cancer at earlier stages. Others found mammography to be uncomfortable and woman-unfriendly, suggesting that the compression of breasts between plates could be harmful and advocating for thermal scans as their preferred approach to cancer detection.
