Interview with Violeta Astratinei, Core member of Melanoma Patient Network Europe and Founder of Melanom Romania.
Please tell us who you are and why you are particularly interested in Early Detection
I am a former researcher and got involved in patient advocacy after losing my sister to melanoma. In 2014 I joined Melanoma Patient Network Europe (MPNE) and founded the Association Melanom Romania (AMeR), hoping to help others to survive melanoma. Having my sister diagnosed at a relatively higher stage made me think about what we could do in Eastern European countries to discover melanoma earlier, ideally at the point that gives a person a maximum chance to survive. Although she was seen regularly in a dermatology unit as a high-risk patient, her primary melanoma was missed by standard dermoscopy controls. So when Melanoma Patient Network Europe joined iToBoS, I saw it as an opportunity to participate in a large European initiative to improve the early detection of melanoma and, hopefully, survival for people like her.
Can you give us some more details on the situation in Romania?
Romania reports a relatively low incidence of melanoma of 7.9 cases per 100 000 residents, according to European Cancer Information System (ECIS), but this figure is likely an underestimation, considering the absence of a national melanoma registry. 1547 people were diagnosed with melanoma in Romania in 2020, out of which one-third lost their lives.
If we look at the survival statistics, e.g. AJCC the 8th edition, melanoma patients have a good survival rate of 96-99% in stage I and 82-93% in stage II, but the prognosis looks quite different in the Eastern European region. A study from 2018 (Allemani et al.) shows Melanoma 5 years survival rate exceeded 90% for Nordic and Western countries but was below 60% in Eastern Europe for people diagnosed in the last decade.
As for early detection, signals are equally worrisome. 10 years ago, when my sister was diagnosed, estimates from Bulgaria and Romania showed that 25% of patients were diagnosed with stage III and IV disease, while thin melanomas under 1 mm thick comprised less than 10% of newly-diagnosed cases. This is in contrast to Western Europe, where up to 70% of newly-diagnosed melanomas are <1 mm thick. Again, this is a worrying difference showing that the government in Romania must take systematic measures and not rely on education and opportunistic actions performed by NGOs or professional societies.
What can be done? What difference will iToBoS make for patients in Romania and elsewhere?
We noticed in our communities a tremendous interest in tools that could prevent or detect melanoma as early as possible. We know that in patients with many atypical moles, also called dysplastic naevi, the risk of missing a melanoma is significant, even with many excisions of benign lesions in every patient. Useless to say patients are terrified by that. As the interventions are not reimbursed, patients spend their own money on accessing digital dermatoscopy to map the lesions at risk and follow their evolution. This makes, unfortunately, early detection affordable only for the educated and wealthy.
"We need interventions to accurately diagnose melanoma at affordable costs for every European country and beyond and ensure their accessibility for ALL patients in need."
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iToBoS aims to identify melanoma in people by scanning the whole body of patients at high risk and then processing large patient datasets by artificial intelligence (AI) and deep learning. The model integrates moles’ images, clinical (age, sex, family history), and genetic or histopathological data to accurately identify melanomas. At the same time, attention is put into the Whole Body scanner design, functionality and cost to make it accessible, so we look forward to the first iToBoS prototype and its successful implementation in as many European hospitals as possible.
What are your goals as a patient community beyond this project?
We hope iToBoS will become one of the precision diagnostic technologies affordable in hospitals all over Europe, including Romania and other Eastern European countries. In this respect, more effort would be required to educate stakeholders and health authorities on how to understand and reimburse this new generation of diagnostic tools for cancer. Beyond iToBoS, there is a need to understand and to better define the predisposition and risk for aggressive melanomas. Who is going to get melanoma, and who are those patients whose melanoma will metastasise fast or even after 10-20 years after diagnosis? And what can we do about that? These are questions occurring and reoccurring in melanoma patient communities for which we look to get answers via the synergy of iTobos with other European projects.
References
- Allemani C, Matsuda T, Di Carlo V, et al. Global surveillance of trends in cancer survival 2000–14 (CONCORD-3): analysis of individual records for 37 513 025 patients diagnosed with one of 18 cancers from 322 population-based registries in 71 countries. Lancet. 2018;391(10125):1023–1075. doi: 10.1016/S0140-6736(17)33326-3.
- Gershenwald, J. E., Scolyer, R. A., Hess, K. R., Sondak, V. K., Long, G. V., Ross, M. I., Lazar, A. J., Faries, M. B., Kirkwood, J. M., McArthur, G. A., Haydu, L. E., M. Eggermont, A. M., Flaherty, K. T., Balch, C. M., & Thompson, J. F. (2017). Melanoma staging: Evidence-based changes in the American Joint Committee on Cancer eighth edition cancer staging manual. CA: A Cancer Journal for Clinicians, 67(6), 472-492. https://doi.org/10.3322/caac.21409
- Fechete O, Ungureanu L, Șenilă S, Vornicescu D, Dănescu S, Vasilovici A, Candrea E, Vesa ȘC, Cosgarea R. Risk factors for melanoma and skin health behaviour: An analysis on Romanian melanoma patients. Oncol Lett. 2019 May;17(5):4139-4144. doi: 10.3892/ol.2018.9737. Epub 2018 Nov 19. PMID: 30944607; PMCID: PMC6444336.
- Forsea AM. Melanoma Epidemiology and Early Detection in Europe: Diversity and Disparities. Dermatol Pract Concept. 2020 Jun 29;10(3):e2020033. doi: 10.5826/dpc.1003a33. PMID: 32642304; PMCID: PMC7319793.
- Şuteu, Ofeliaa,b; Blaga, Mihaiela L.a; Nicula, Floriana; Şuteu, Patriciaa,b; Coza, Ovidiua,b; Achimaş-Cadariu, Patriciua,b; Coza, Danielaa. Incidence trends and survival of skin melanoma and squamous cell carcinoma in Cluj County, Romania. European Journal of Cancer Prevention 26():p S176-S182, September 2017. | DOI: 10.1097/CEJ.0000000000000382
- ECIS - European Cancer Information System https://ecis.jrc.ec.europa.eu/