Impact Factor 1.022
Volume 33, 12 Issues, 2023
  Letter to the Editor     March 2023  

Importance of Development of Rare Cancers National Tumour Board

By Laraib Khan1, Ahmed Nadeem Abbasi1, Sohail Rasool2


  1. Section of Radiation Oncology, The Aga Khan University Hospital, Karachi, Pakistan
  2. General Practice Clinic, Portlaoise, County Laoise, Republic of Ireland
doi: 10.29271/jcpsp.2023.03.364


Cancer is one of the leading causes of death worldwide and rare malignancies constitute about 22% of all reported cancer cases. In literature, there is no generally accepted definition for rare cancers. However, several definitions were proposed by different working groups. In the US, rare cancers are defined as those with incidence of <15 cases per 100,000 per year.1 As per the European RARECARE definition, rare cancers have an incidence of <6 cases per 100,000 per year. The incidence of rare cancers is more than any single commonly encountered cancer such as breast, colorectal and lung cancers having incidences of 16%, 13% and 13% respectively.2 Data on etiologies and risk factors are limited, while the pathological and molecular features are still obscure.

Several international collaborative groups have taken initiatives like RARECARE, International Rare Cancers Initiative, and Rare Cancers Europe, launched by the European Society for Medical Oncology in order to address clinical problems posed by rare cancers.3

Dealing with rare cancers is devastating for patients, their families, and clinicians. It becomes even more arduous to diagnose and manage such rare cancers in emerging low-middle- income countries and requires organisational infrastructure, such as comprehensive national databases, and rare cancer registries.4 Certain measures can be taken in order to improve outcomes in patients with rare cancers in Pakistan including the development of a separate tumour board for rare cancers at the national level, peer review meetings (PRM), rare cancer registry and database.

As established in literature, it is imperative to discuss all cases in multidisciplinary team (MDT) tumour board meetings to provide quality care.5 It is, therefore, needed to start a separate rare cancers MDT tumour board, consisting of an expert panel of surgical, radiation, and medical oncologists, pathologists, and radiologists. For this purpose, we can define rare cancers as tumours that do not qualify to be discussed in other site-specific MDT tumour board meetings like breast, urology, and lymphoma, etc. Peer review process of Rare Cancers management plans can also aid in quality improvement as supported by several studies.6

Rare cancers impose a major burden to healthcare in both developed and developing countries and efforts are required for early accurate diagnosis and better decision-making. Establishment of rare cancer tumour board can be an initiative which will serve as the base for further research and advancements in their management in Pakistan.

The authors declared no competing interest.

LK, ANA: Involved in designing, drafting, and revising of the manuscript.
SR: Coordinator of tumour Board Establishment Facilitation Forum (TEFF) has critically reviewed the manuscript.


  1. Greenlee RT, Goodman MT, Lynch CF, Platz CE, Havener LA, Howe HL. The occurrence of rare cancers in US adults, 1995-2004. Public Health Rep 2010; 125(1):28-43. doi: 10. 1177/003335491012500106.
  2. Gatta G, Van Der Zwan JM, Casali PG, Siesling S, Dei Tos AP, Kunkler I, et al. Rare cancers are not so rare: The rare cancer burden in Europe. Eur J Cancer 2011; 47(17): 2493-511. doi: 10.1007/978-90-481-9485-8_17.
  3. Keat N, Law K, Seymour M, Welch J, Trimble T, Lascombe D, et al. International rare cancers initiative. Lancet Oncol 2013; 14(2):109-10. doi: 10.1016/S1470-2045(12)70570-3.
  4. Mano MS, Arai RJ, Hoff PM. Rare Tumours research in emerging countries. Rare Tumours 2010; 2(3):142-3. doi: 10.4081/rt.2010.e49.
  5. Abbasi AN. Establishment and maintenance of quality of site-specific multidisciplinary Tumour boards in Pakistan. J Coll Physicians Surg Pak 2016; 26(10):805-7.
  6. Qureshi BM, Mansha MA, Karim MU, Hafiz A, Ali N, Mirkhan B, et al. Impact of peer review in the radiation treatment planning process: Experience of a tertiary care university hospital in Pakistan. J Global Oncol 2019; 5:1-7. doi: 10. 1200/JGO.19.00039.