World CUP Awareness Week 2022

Cancer of Unknown Primary World Awareness Week

About Cancer of Unknown Primary World Awareness Week

It is our goal to increase much needed awareness and a sense of urgency for CUP as a very challenging oncological syndrome that needs more support from global communities, research institutions and medical organisations to achieve better care opportunities. We believe we need to really raise alarm bells on enhancing access to better molecular diagnostics/personalised diagnostics/CGP and targeted treatment/trials for all cancer patients. We want to use the growing awareness for CUP to further educate patients, medical specialists and policy makers on this important matter and show parties what diagnostics/care is being developed and will soon be available for patients. We hope that this website will help all those with an interest in Cancer of Unknown Primary to connect and contribute to potential research collaborations across the world.

Following the success of the first ever world cancer of unknown primary awareness week in 2021, SJK Foundation (Ireland) and Missie Tumor Onbekend (Netherlands) two national patient organisations dedicated to improving quality of care & life by providing information and support for patients with Cancer of Unknown Primary (“CUP”) are joining forces again for World CUP Awareness Week 2022. The theme of this year’s awareness week is ‘The patient journey’. We hope to identify challenges and opportunities for Cancer of Unknown Primary patients, families healthcare professionals and researchers.

Once again, the awareness week will bring together CUP experts from around the world in Lunchtime Webinars on the 20th, 21st & 23rd September 2022 (12pm GMT 1PM CET).

Follow our social media campaign on Instagram, Facebook, Twitter and Linkedin and register on our website to keep updated!

What is Cancer of Unknown Primary

Cancer of Unknown Primary (CUP) is when a secondary cancer is diagnosed, but doctors can’t tell where the primary cancer started. The secondary cancer is named after the primary cancer. For example, a cancer that starts in the lungs and spreads to the liver is still a lung cancer.

The secondary cancer in the liver is made up of lung cancer cells and not liver cells. Secondary cancers are also usually treated according to the primary cancer. Knowing where the cancer started helps the doctors to know what types of treatment to use for the secondary cancer. For example, a lung cancer that has spread to the liver will be treated using lung cancer treatments. It’s treated differently to a cancer that starts in the liver (primary liver cancer).

With CUP, the primary cancer isn’t known. This means that treatment choices are often more difficult to make. (Macmillan.org.uk)

For some patients the origin of the cancer will be found through further tests, however for many patients the primary cancer will never be identified and will remain unknown. A cancer diagnosis in itself is devastating for patients, families and friends, but for the cause of the cancer to be unknown is entirely overwhelming.

Patients diagnosed with CUP need expert coordinated multidisciplinary support, effective communication is vital between teams, patients and their families regarding treatment plans and tests.

Lunchtime Webinars om 2021

Update on Cup Initiatives & Research in Australia (2021)

Update On Cup Initiatives & Research in The United Kingdom (2021)

Update from Investigators on The Cupisco Trial (2021)

Innovative Diagnostics for Cup (2021)

Update on CUP Initiatives & Research In The Netherlands (2021)

Latest Innovations in Cup Research (2022)

Clinical Cup Diagnostics & Care Pathways (2022)

Dealing with the Uncertainty of the CUP Diagnosis (2022)

Register to partecipate to our latest webinars live or browse our website to REplay the ones from our previous editions worldcupawareness.org

Speakerspast&present

Dr. Alicia-marie Conway Clinical Research Fellow The Christie Nhs Foundation Trust

Dr Natalie Cook Clinical Snr Lecturer Exp Cancer Med The Christie Nhs Foundation Trust

Edwin Cuppen Prof of Human Genetics At Umc Utrecht Scientific Director at Hartwig Medical Foundation

Dr Manel Esteller Director Josep Carreras Leukaemia Research Institute (IJC)

Dr. Phil Febbo Medical Oncologist & Chief Medical Officer at Illumina

Dr. Tony Greco Director Sarah Cannon Cancer Center at TN Oncology

Karlijn Hermans Phd Researcher in Cancer Epidemiology Maastricht University

Fatameh Kazemzadeh Phd Researcher In Pathology, Radboud University Hospital

Tanya Knott Founder & Director Sarah Jennifer Knott Foundation Dublin, Ireland

Caroline Loef Post Doc Researcher Integraal Kankercentrum Nederland (IKNL)

Dr Mark P. Lythgoe Academic Clinical Fellow in Medical Oncology Imperial College London

Dr Faisal Mahmood Assistant Professor of Pathology Harvard Medical School, Division of Computational Pathology, Brigham & Women’s Hospital

Prof. Linda Mileshkin Deputy Director Medical Oncology Peter MacCallum Cancer Centre, Victoria

Warnyta Minnaard Co-founder Missie Tumor Onbekend, Amsterdam, The Netherlands

Claire Mitchell Consultant In Medical Oncology, Clinical Lead for Acute Oncology & Cup Services

Piarella Peralta Social Psychologist & Patient Advocate at Inspire2live

Dr Kai-keen Shiu Consultant Medical Oncologist UCLH Gastrointestinal Oncology Service, CUP Service, Honorary A/professor UCL Cancer Institute

Prof. Penelope Schofield Head Of Behavioral Science Peter MacCallum Cancer Centre, Victoria Prof Of Health Psychology at Swinburne University Of Technology

Dr. Petur Snaebjornsson Pathologist Netherlands Cancer Institute

Dr Mark Stares Specialist Registrar in Medical Oncology Edinburgh Cancer Centre

John Symons Founder & Director Cancer Of Unknown Primary (CUP) Foundation - Jo’s Friends, Uk

Alison Taylor CUP Nurse Consultant The Clatterbridge Cancer Centre

A/prof. Richard Tothill Associate Professor at University of Melbourne

Léon Van Kempen Clinical Molecular Biologist in Pathology Laboratory For Molecular Pathology At Umc Groningen

Marieke Vollebergh Internist Oncologist The Netherlands Cancer Institute

Research, Publications and Projects Worldwide

Research Programs/ Researchers / Institutes

We compiled an interactive list of all the CUP Researchers, Specialists and Institutes around the World, making sure the contact details are always up-to-date. If you don’t find what you are looking for, feel free to contact anyone on our team, we will help you find what you were looking for.

info@worldcupawareness.org

Research and clinical trials

today

cupfoundjo.org/research

CUP FOUNDATION – JO’S FRIENDS

was established in memory of Jo Symons who died with CUP in September 2006 a few days after her 46th birthday. Jo, a graphic designer, was diagnosed with cancer, and the primary site could not be identified. Different tests produced different ideas. (...) Jo endured 3 different chemotherapy regimens over 8 months before she died. Her primary remains ‘unknown’.*

To her family and friends it seemed incomprehensible that, in the 21st century, it was not possible to make a diagnosis and that little was being done to promote awareness and research; or to offer information and support to CUP patients and carers.

*For further background see CNN report.

cupp-nl.eu/projects forpatients.roche.com/en/trials

CANCER OF UNKNOWN PRIMARY PLATFORM / the Netherlands

CUPP-NL is the expert platform in the Netherlands that is committed to patients with metastatic cancer whose primary tumor cannot be found. By raising awareness and collaboration both nationally and globally, pooling current knowledge and stimulating scientific research, we aim to improve diagnostics and treatment options for CUP patients and CUP patient care in general.

FORPATIENTS is an informational resource for patients, their relatives, caregivers or doctors looking for information in clear and simple language about clinical trials or diseases where Roche/Genentech is doing research or supporting research conducted by others.

(CUPISCO) TRIAL SUMMARY

This study will compare the efficacy and safety of molecularly-guided therapy versus standard platinum-containing chemotherapy in participants with poor-prognosis cancer of unknown primary site (CUP; non-specific subset) who have achieved disease control after 3 cycles of first-line platinum based induction chemotherapy.

cup-syndrome.com

CUP SYNDROME here you can find useful information to learn more about the basics of CUP (cancer of unknown primary) including epidemiology, pathogenesis, diagnostic work-up and therapeutic options.

ARE YOU AWARE OF THE UNKNOWN?

CUP (cancer of unknown primary) syndrome is defined as a cancer for which only metastases but no primary tumour or site of origin are detectable at the end of a diagnostic and clinical work-up.induction chemotherapy.

nature.com

NATURE is a weekly international journal publishing the finest peer-reviewed research in all fields of science and technology on the basis of its originality, importance, interdisciplinary interest, timeliness, accessibility, elegance and surprising conclusions. (...)

NATURE'S MISSION STATEMENT

First, to serve scientists through prompt publication of significant advances in any branch of science, and to provide a forum for the reporting and discussion of news and issues concerning science. Second, to ensure that the results of science are rapidly disseminated to the public throughout the world, in a fashion that conveys their significance for knowledge, culture and daily life.

Patients st ies

Sarah was diagnosed with cancer in August of 2013. The tumour on diagnosis was a secondary, presumed uterine primary. Sarah’s consultant referred her for further scans. The biopsy test was inconclusive, the histopathologist was unable to obtain a definitive diagnosis due to the nature of the cells. Sarah was referred to a specialist gynaecologist surgeon and he discussed the possibility of the cancer being a lymphoma. A couple of days later she got a call from the nurse specialist to say the cancer was not a lymphoma, but perhaps it could be a germ cell tumour. Weeks passed, whilst we waited for a diagnosis so Sarah could start treatment.

At Sarah’s next appointment (5th appointment for a diagnosis) she was diagnosed with lymphoma. We were all so happy and relieved as this is a very treatable cancer. Sarah was admitted to hospital, to commence treatment, to which she had an amazing response, with a tumour in her neck disappearing after the first dose of chemotherapy. However just before Sarah was being discharged, her consultant delivered more devastating news, the histopathologist remained unconvinced the cell staining was a lymphoma and he was sending her biopsy to Boston, USA for further investigation. Weeks later, Sarah was called for the sixth time to get her cancer diagnosis only to be told, despite extensive testing, it was impossible to find the primary source of the cancer, and

she was officially diagnosed with Cancer of Unknown Primary.

This diagnosis was met by us with complete shock, very few people had heard of this type of cancer, including many healthcare professionals, it was very hard to find information outside of the hospital, and there were no patient support groups in Ireland adding to the mystery and agony of the diagnosis.

Sarah went on to have three different cycles of chemotherapy almost concurrently with a 4-month break, alongside numerous radiotherapy sessions.

Sarah received the highest standard of care from all the members of the multidisciplinary team from diagnosis to treatment, and was especially grateful to her oncologists, and all the nursing team, for their, care, support, and kindness. Sarah continued fundraising for the Irish Cancer Society in between chemotherapy treatments.

Sarah died on the 11th April 2015 at the age of 31.

Hederik de Vries, 32 years young, started an unclear medical process in June 2018 – to what later turned out to be a PTO process – with slightly double vision in his right eye. Initially, he went to an orthoptist who suggested checking his vision after the summer to see if there would be an improvement in the complaints. During that summer, his right eyelid began to droop and the double vision gradually got worse. After a CT scan in early August, a long period of uncertainty started in which numerous possible diagnoses emerged, coupled with further investigation. It was initially thought that the “space-occupying lesions” found on his third cranial nerve and later on other cranial and spinal nerves were an aneurysm, a benign brain tumor (bridge angle tumor), or a special form of neurocysticercosis. However, the picture was not entirely consistent with comparable, known conditions. And that is why they also looked for possible tropical diseases because Hederik had spent a lot of time in several Asian and African countries in recent years for his work as a management consultant.

In the meantime, there was constant testing for all possible infections, autoimmune disorders, and cancers, and Hederik underwent ultrasound, CT, MRI and PET scans of multiple organs and body parts. He could be found in the hospital once or twice a week for another examination. Each time, nothing conclusive came out and a diagnosis was not forthcoming. Until the end of November 2018 in a new hospital for the first

time the conviction came that it must be cancer, because that was actually all that was left. All possible existing tumors were (re)examined for this. At the beginning of December, in yet another new hospital, the doctors again went down the route of a possible infection because what they found did not actually belong to the known forms of cancer. At the end of December, there was no other choice than to take a biopsy of a sensory nerve via a risky and radical operation, and on Christmas Eve it was clear that it was definitely metastatic cancer. For the first time, the diagnosis PTO came forward. Doctors still wanted to continue the search for where the primary tumor was, because PTO was actually a half-diagnosis, and there was also talk about treatment options.

After all, Hederik was so young, and until recently, fit so if anyone could handle a treatment it was Hederik. In the meantime he had been in hospital since early December, he had lost weight and weakened and unfortunately his pain could not be permanently controlled. However, his doctors could not give a prognosis, let alone say anything about the quality of his life, because the primary tumor was missing.

It was decided to start a first treatment in the form of a general course of chemotherapy on January 11, 2019. For the first time, doctors had the cautious hope of being able to improve his situation, after a diagnostic process of more than six months.

For Hederik himself, his loved ones, loved ones and friends, that also gave hope amid all the constant fear. It did not help. Hederik died on January 12, 2019, at much too young age, in the arms of his girlfriend at the intensive care. His death was therefore unexpected and his doctors had not seen it coming in this way.

Hederik’s girlfriend and groups of friends joined forces in the autumn of 2019 to find a solution for CUP, also in memory of their good friend and loved one. They have united in the Friends of Hederik Foundation. Together with the Stars Foundation, they founded Missie Tumor Onbekend in 2020.

Francine van der Heijden, 2021: Nine years ago, in four months time, I would lose both my father and my sister Carin to the form of cancer we call CUP. My mother died a year later of a broken heart. It was like a Greek tragedy, it was a bomb on a normal and happy family. In 2014, my last remaining relative, my sister Anne-Marie, would contract a four-year illness with breast cancer. But this is only half of my story about Cup. The second half starts in 2019, when researcher Caroline Loef reports that she has almost finished her broad study on CUP. She introduces me to Warnyta Minnaard who, like me, is raising awareness about CUP.

Our foundations merge into Mission Tumor Unknown: Missie Tumor Onbekend. Every day I think of my sister Carin, mother of two young children and taken from us when she was only 41 years of age. She herself bravely started the first patient-information on a Dutch website for the many patients who are diagnosed with CUP every year. Who spend their last days in great uncertainty but without a form of case management. These days people work hard to improve this situation, which remained virtually unchanged in the Netherlands until 2020. Hard work is being done not just by Warnyta, Caroline, Anne-Marie and myself. There are now two specialist CUP- teams in Amsterdam and Rotterdam. There is better research to find the primary source of this form of cancer, but there is need for improvement, as the number of CUP patients in the Netherlands is still increasing. Raising awareness is of the utmost importance!

donateFundraising

Every year, approximately 1 million people around the world are diagnosed with Cancer of Unknown Primary or CUP. Their individual cancer pathway is very different to those diagnosed with other cancers – their journey is very much unknown.

We created a toolkit that will help you or your group to organise activities to raise awareness and raise funds for Cancer of Unknown Primary.

Funds raised will go towards education, awareness and research into Cancer of Unknown Primary. Founders, directors and extended support team are all volunteers. Choose the CUP charity you would like to support today.

You can find more ideas and info on our booklet ‘Together into the Unknown’, available for download on our website.

organisers

Tanya Knott

Director, Sarah Jennifer Knott Foundation info@sjkfoundation.org

Tanya has worked in the healthcare industry for over 25 years. A graduate of King's College London and Trinity College Dublin, Tanya has worked as a registered general nurse specialising in cardio thoracic, intensive care and emergency nursing. Tanya also has years of experience working in the pharmaceutical industry in market access. When Sarah was diagnosed with cancer of unknown primary, Tanya realised there was a huge gap in knowledge and research in this disease area and set up the foundation in the aim of promoting improved awareness, research and education into cancer of unknown primary (CUP). Tanya is co- founder of world cancer of unknown primary week www.worldcupawareness.org working with global experts, patients, health care professionals, researchers and industry to promote education, awareness and research into CUP. Tanya has written published articles and a white paper on the unmet needs of patients with cancer of unknown primary and has presented at many CUP international conferences. Tanya is a board member of 'From Testing to Targeted Treatments'. FT3 is a global initiative to help ensure access to precision medicine for all those that need it www.fromtestingtotargetedtreatments.org

Warnyta Minnaard

Co-founder, Missie Tumor Onbekend warnyta@missietumoronbekend.nl

Warnyta is an investment manager at Noaber & Co, board member (treasurer) at CUPP-NL, the expert platform on CUP. Missie Tumor Onbekend is a stakeholder within CUPP-NL and in that capacity

Warnyta is a member of the Board of Management.

Missie Tumor Onbekend is a collaboration between Stars Foundation, The Friends of Hederik Foundation and the Dutch Federation of Cancer Patient Organizations (NFK). Both foundations were founded by relatives of PTO patients, Carin van der Heijden and Hederik de Vries. Carin himself initiated the first website with information about PTO.

Mission Tumor Unknown is affiliated with the Platform Rare Cancers of the NFK. Stars Foundation rolls up its sleeves for: more information about PTO and provide palliative care for PTO patients and attention to the problems of their loved ones.

The Friends of Hederik Foundation was established on May 15, 2020 in memory of our beloved and good friend Hederik de Vries, who passed away on January 12, 2019 at the age of 32 from the consequences of PTO. The Friends of Hederik Foundation is a CBF-recognized charity.