The World of Rare Cancers

For a person to be “rare” they have to stand out from a crowd in a one-of-a-kind manner. This distinction is often associated with pleasing qualities that make people want to know more about the individual and understand the distinctive attribute that attracts interest. And this inquisitive and prying desire to analyze “rare” is needed in the oncology world.

Congressionally Directed Medical Research Programs define a rare cancer as one having an incidence of 6 or fewer cases per 100,000 people per year.¹ Two hundred forms of rare cancer make up 20% to 25% of all US cancer diagnoses and affect more than 400,000 Americans per year.¹ Sixty-seven percent of the cancer types that impact individuals who have served in the military are considered rare cancers,¹ and because the cancer rate in children is low, all children’s cancers could be considered rare.

Instead of being in the spotlight for a gratifying “rare” quality, the survivors of a rare cancer often face a drawn-out diagnosis since research to identify causes or develop strategies for prevention and early detection is limited. Because fewer patients are affected by the disease, there are an insufficient number of experts with access to smaller quantities of research. The experience of cancer can be further intensified in this population with lack of information tailored to their specific condition.

The analytical nature of healthcare professionals in the oncology world has opened more targeted and personalized treatment options because of the distinct genetic mutations of the tumor. With highly targeted treatments that specifically attack those mutations, efficacy in treatment is gained with fewer side effects and overall better outcomes.

Creative and collaborative patient-centric approaches like ones by The Rare Cancer Research Foundation is foundational to this investigative approach.² Patients with a rare cancer at any hospital can donate a tissue sample directly to researchers studying their disease. The researchers can advance their understanding of the rare cancer and create cell lines fueling the future of research. How gratifying for a patient to be an active part of care!

Social media is a way to facilitate communication and community building. And as always, oncology navigators are there for these patients who do not have a ribbon or a race. They give a voice and strong advocacy support as they educate about the disease, coordinate therapies, and identify resources to enhance best care.

References

1. Congressionally Directed Medical Research Programs. Rare Cancers. https://cdmrp.health.mil/rcrp/
2. The Rare Cancer Research Foundation. We Are Fiercely Patient Centric. https://rarecancer.org/about-rcrf