SJK Foundation (Ireland), CupFoundJo (the UK) and Missie Tumor Onbekend (the Netherlands), three national patient organisations dedicated to improving quality of care & life and providing information and support for patients with cancer of unknown primary (“CUP”) have joined forces and are launching the first pan-European and world awareness week for CUP in 2021.
Cancer of Unknown Primary: Is the unknown now known?
3pm-4pm | 21st June 2022
This special one-hour webinar is sponsored by Cancer of Unknown Primary Foundation – Jo’s friends and is free to attend. It has been designed to examine how today’s leading edge research can benefit CUP patients and what is needed to consign CUP to history.
CUP Awareness Week: connecting researchers, clinicians and patient advocates
Cancer is usually diagnosed and treated based on where it began. If the disease originates in the lung, it is called lung cancer even if it spreads to the bones or the liver. This matters because it informs treatment decisions, prompting oncologists to follow standard pathways of care.
Visualizing the patient pathway in precision medicine
Precision medicine is here and ready to improve outcomes, yet patients cannot access the necessary tools and supports, the recent PEOF heard Precision medicine represents a paradigm shift in the treatment of many of the most serious diseases, with the promise of tailored therapies and much-enhanced outcomes. Yet global access to this approach remains patchy and inconsistent, and inequality dominates.
Patient story: A cutting-edge DNA test put Inke Logtenberg on the right treatment path. Now she hopes others with Cancer of Unknown Primary (CUP) will have swift access to personalized care. Inke knew something wasn’t right. She had some swelling in a lymph node in her groin, prompting a trip to the doctor. After a physical examination, the doctor was not very concerned and recommended a ‘wait and soon’ approach.
Warnyta Minnaard lost her partner, Hederik, to Cancer of Unknown Primary (CUP). Heartbreak inspired her to spearhead a campaign for the reimbursement of whole genome sequencing in the Netherlands so that others might be spared the same fate. Hederik was just 32 when he became ill three years ago. It began with a drooping eyelid and prompted him to go to hospital in search of answers. Doctors were able to confirm after several months that he had cancer, but could not determine where it began. This matters because diagnosis informs treatment.
“We were in pure panic that the oncologist did not know what it was,” says Tanya Knott, whose sister, Sarah, suffered from a rare condition called Cancer of Unknown Primary Origin or CUP for short. “It was such a roller coaster ride going from one possible diagnosis to another—from uterine cancer, to lymphoma, to germ cell, then back to lymphoma,” Tanya explains. The fact is, none of Sarah’s oncologists ever knew with certainty what kind of cancer she had up until the day she passed away in 2015 at the age of 31.
Tanya Knott, Director, SJK Foundation, spoke to Danielle Barron about her vision of personalized medicine and the personal tragedy that drives her to make it a reality. I am the founder and director of the Sarah Jennifer Knott Foundation. I established the foundation with family and friends in 2016 following the death of my sister Sarah aged 31 from cancer of unknown primary also known as CUP. The aim of the foundation is to raise awareness, education and research into CUP.
“Cancer of unknown primary (CUP) is a diagnosis in itself and doctors will tell you it’s not ‘unknown’, just that we can’t find the primary,” says Tanya Knott, director of the Sarah Jennifer Knott (SJK) Foundation, Ireland, who founded the organization after her sister, Sarah, died from CUP at the age of 31. “After a tumor was found in her uterus and then one in her neck, my sister experienced several diagnoses—it wasn’t until three months after her first presentation, and multiple diagnostic tests, that she was diagnosed with cancer of unknown primary.”