World CUP Awareness Week 2022

Cancer of Unknown Primary World Awareness Week

About Cancer of Unknown Primary World Awareness Week I

t is our goal to increase much needed awareness

F

ollowing the success of the first ever world

and a sense of urgency for CUP as a very challen-

cancer of unknown primary awareness week in

ging oncological syndrome that needs more

2021, SJK Foundation (Ireland) and Missie Tumor

support from global communities, research

Onbekend (Netherlands) two national patient

institutions and medical organisations to achieve

organisations dedicated to improving quality of care

better care opportunities. We believe we need to

& life by providing information and support for

really raise alarm bells on enhancing access to

patients with Cancer of Unknown Primary (“CUP”)

better molecular diagnostics/personalised diagno-

are joining forces again for World CUP Awareness

stics/CGP and targeted treatment/trials for all

Week 2022. The theme of this year’s awareness

cancer patients. We want to use the growing

week is ‘The patient journey’. We hope to identify

awareness for CUP to further educate patients,

challenges and opportunities for Cancer of

medical specialists and policy makers on this

Unknown Primary patients, families healthcare

important matter and show parties what diagnostic-

professionals and researchers.

s/care is being developed and will soon be available for patients. We hope that this website will

Once again, the awareness week will bring together

help all those with an interest in Cancer of

CUP experts from around the world in Lunchtime

Unknown Primary to connect and contribute to

Webinars on the 20th, 21st & 23rd September 2022

potential research collaborations across the world.

(12pm GMT 1PM CET).

#makethemysteryhistory WORLDCUPAWARENESS.ORG

What is Cancer of Unknown Primary C

ancer of Unknown Primary (CUP) is when a

W

ith CUP, the primary cancer isn’t known.

secondary cancer is diagnosed, but doctors can’t

This means that treatment choices are often more

tell where the primary cancer started. The secon-

difficult to make. (Macmillan.org.uk)

dary 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

F

(primary liver cancer).

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.

ollow our social media campaign on

Instagram, Facebook, Twitter and Linkedin and register on our website to keep updated! #MAKETHEMYSTERYHISTORY

Lunchtime Webinars

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

WORLDCUPAWARENESS.ORG

Speakers

past&present

Dr. Alicia-marie Conway

Dr Natalie Cook

Edwin Cuppen

Dr Manel Esteller

Clinical Research Fellow The Christie Nhs Foundation Trust

Clinical Snr Lecturer Exp Cancer Med The Christie Nhs Foundation Trust

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

Director Josep Carreras Leukaemia Research Institute (IJC)

Dr. Phil Febbo

Dr. Tony Greco

Karlijn Hermans

Fatameh Kazemzadeh

Tanya Knott

Caroline Loef

Dr Mark P. Lythgoe

Dr Faisal Mahmood

Prof. Linda Mileshkin

Warnyta Minnaard

Claire Mitchell

Piarella Peralta

Dr Kai-keen Shiu

Prof. Penelope Schofield

Dr. Petur Snaebjornsson

Dr Mark Stares

John Symons

Alison Taylor

A/prof. Richard Tothill

Léon Van Kempen

Marieke Vollebergh

Medical Oncologist & Chief Medical Officer at Illumina

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

Pathologist Netherlands Cancer Institute

Director Sarah Cannon Cancer Center at TN Oncology

Deputy Director Medical Oncology Peter MacCallum Cancer Centre, Victoria

Specialist Registrar in Medical Oncology Edinburgh Cancer Centre

Phd Researcher in Cancer Epidemiology Maastricht University

Co-founder Missie Tumor Onbekend, Amsterdam, The Netherlands

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

Phd Researcher In Pathology, Radboud University Hospital

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

CUP Nurse Consultant The Clatterbridge Cancer Centre

Founder & Director Sarah Jennifer Knott Foundation Dublin, Ireland

Social Psychologist & Patient Advocate at Inspire2live

Associate Professor at University of Melbourne

Post Doc Researcher Integraal Kankercentrum Nederland (IKNL)

Consultant Medical Oncologist UCLH Gastrointestinal Oncology Service, CUP Service, Honorary A/professor UCL Cancer Institute

Clinical Molecular Biologist in Pathology Laboratory For Molecular Pathology At Umc Groningen

Academic Clinical Fellow in Medical Oncology Imperial College London

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

Internist Oncologist The Netherlands Cancer Institute

#MAKETHEMYSTERYHISTORY

Research, Publications and Projects Worldwide W

e 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

WORLDCUPAWARENESS.ORG

world map

Research Programs/ Researchers / Institutes

Research and clinical trials

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.

today

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

cup-syndrome.com

nature.com

FORPATIENTS is an informational resource

CUP SYNDROME here you can find useful

NATURE is a weekly international journal

for patients, their relatives, caregivers or doctors

information to learn more about the basics of

publishing the finest peer-reviewed research in

looking for information in clear and simple

CUP (cancer of unknown primary) including

all fields of science and technology on the basis

language about clinical trials or diseases

epidemiology, pathogenesis, diagnostic work-up

of its originality, importance, interdisciplinary

where Roche/Genentech is doing research or

and therapeutic options.

interest, timeliness, accessibility, elegance

supporting research conducted by others.

(CUPISCO) TRIAL SUMMARY

ARE YOU AWARE OF THE UNKNOWN?

and surprising conclusions. (...)

CUP (cancer of unknown primary) syndrome is

NATURE'S MISSION STATEMENT

This study will compare the efficacy and safety

defined as a cancer for which only metastases

First, to serve scientists through prompt

of molecularly-guided therapy versus standard

but no primary tumour or site of origin are

publication of significant advances in any

platinum-containing chemotherapy in participants

detectable at the end of a diagnostic and

branch of science, and to provide a forum for

with poor-prognosis cancer of unknown primary

clinical work-up.induction chemotherapy.

the reporting and discussion of news and issues

site (CUP; non-specific subset) who have

concerning science. Second, to ensure that the

achieved disease control after 3 cycles of

results of science are rapidly disseminated to

first-line platinum based induction

the public throughout the world, in a fashion

chemotherapy.

that conveys their significance for knowledge, culture and daily life.

#MAKETHEMYSTERYHISTORY

Patients

stories

S

arah was diagnosed with cancer in August of

Primary.

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

WORLDCUPAWARENESS.ORG

she was officially diagnosed with Cancer of Unknown

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.

H

F

time the conviction came that it must be cancer,

For Hederik himself, his loved ones, loved ones and

unclear medical process in June 2018 – to what later

because that was actually all that was left. All possible

friends, that also gave hope amid all the constant fear.

in four months time, I would lose both my father and

turned out to be a PTO process – with slightly double

existing tumors were (re)examined for this. At the

It did not help. Hederik died on January 12, 2019, at

my sister Carin to the form of cancer we call CUP.

vision in his right eye. Initially, he went to an orthoptist

beginning of December, in yet another new hospital,

much too young age, in the arms of his girlfriend at the

My mother died a year later of a broken heart.

who suggested checking his vision after the summer to

the doctors again went down the route of a possible

intensive care. His death was therefore unexpected and

It was like a Greek tragedy, it was a bomb on a normal

see if there would be an improvement in the complaints.

infection because what they found did not actually

his doctors had not seen it coming in this way.

and happy family. In 2014, my last remaining relative,

During that summer, his right eyelid began to droop and

belong to the known forms of cancer. At the end of

Hederik’s girlfriend and groups of friends joined forces

my sister Anne-Marie, would contract a four-year illness

the double vision gradually got worse. After a CT scan

December, there was no other choice than to take a

in the autumn of 2019 to find a solution for CUP, also in

with breast cancer. But this is only half of my story about

in early August, a long period of uncertainty started in

biopsy of a sensory nerve via a risky and radical

memory of their good friend and loved one. They have

Cup. The second half starts in 2019, when researcher

which numerous possible diagnoses emerged, coupled

operation, and on Christmas Eve it was clear that it

united in the Friends of Hederik Foundation. Together

Caroline Loef reports that she has almost finished her

with further investigation. It was initially thought that the

was definitely metastatic cancer. For the first time, the

with the Stars Foundation, they founded Missie Tumor

broad study on CUP. She introduces me to Warnyta

“space-occupying lesions” found on his third cranial

diagnosis PTO came forward. Doctors still wanted to

Onbekend in 2020.

Minnaard who, like me, is raising awareness about CUP.

nerve and later on other cranial and spinal nerves were

continue the search for where the primary tumor was,

an aneurysm, a benign brain tumor (bridge angle

because PTO was actually a half-diagnosis, and there

Our foundations merge into Mission Tumor Unknown:

tumor), or a special form of neurocysticercosis.

was also talk about treatment options.

Missie Tumor Onbekend. Every day I think of my sister

ederik de Vries, 32 years young, started an

However, the picture was not entirely consistent with

rancine van der Heijden, 2021: Nine years ago,

Carin, mother of two young children and taken from us

comparable, known conditions. And that is why they

After all, Hederik was so young, and until recently, fit

when she was only 41 years of age. She herself bravely

also looked for possible tropical diseases because

so if anyone could handle a treatment it was Hederik.

started the first patient-information on a Dutch website

Hederik had spent a lot of time in several Asian and

In the meantime he had been in hospital since early

for the many patients who are diagnosed with CUP every

African countries in recent years for his work as a

December, he had lost weight and weakened and

year. Who spend their last days in great uncertainty but

management consultant.

unfortunately his pain could not be permanently

without a form of case management. These days people

controlled. However, his doctors could not give a

work hard to improve this situation, which remained

In the meantime, there was constant testing for all

prognosis, let alone say anything about the quality

virtually unchanged in the Netherlands until 2020. Hard

possible infections, autoimmune disorders, and

of his life, because the primary tumor was missing.

work is being done not just by Warnyta, Caroline,

cancers, and Hederik underwent ultrasound, CT, MRI

Anne-Marie and myself. There are now two specialist

and PET scans of multiple organs and body parts. He

It was decided to start a first treatment in the form of a

CUP- teams in Amsterdam and Rotterdam. There is

could be found in the hospital once or twice a week for

general course of chemotherapy on January 11, 2019.

better research to find the primary source of this form of

another examination. Each time, nothing conclusive

For the first time, doctors had the cautious hope of

cancer, but there is need for improvement, as the number

came out and a diagnosis was not forthcoming. Until

being able to improve his situation, after a diagnostic

of CUP patients in the Netherlands is still increasing.

the end of November 2018 in a new hospital for the first

process of more than six months.

Raising awareness is of the utmost importance!

#MAKETHEMYSTERYHISTORY

Fundraising

donate

E

very 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.

WORLDCUPAWARENESS.ORG

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unds 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.

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ou can find more ideas and info on our booklet ‘Together into the

Unknown’, available for download on our website.

#MAKETHEMYSTERYHISTORY

Meet the organisers Tanya Knott

Warnyta Minnaard

Director, Sarah Jennifer Knott Foundation

Co-founder, Missie Tumor Onbekend

info@sjkfoundation.org

WORLDCUPAWARENESS.ORG

warnyta@missietumoronbekend.nl

Tanya has worked in the healthcare industry for over 25 years. A graduate

Warnyta is an investment manager at Noaber & Co, board member

of King's College London and Trinity College Dublin, Tanya has worked as

(treasurer) at CUPP-NL, the expert platform on CUP. Missie Tumor

a registered general nurse specialising in cardio thoracic, intensive care and

Onbekend is a stakeholder within CUPP-NL and in that capacity

emergency nursing. Tanya also has years of experience working in the

Warnyta is a member of the Board of Management.

pharmaceutical industry in market access. When Sarah was diagnosed with

Missie Tumor Onbekend is a collaboration between Stars Foundation,

cancer of unknown primary, Tanya realised there was a huge gap in knowled-

The Friends of Hederik Foundation and the Dutch Federation of Cancer

ge and research in this disease area and set up the foundation in the aim of

Patient Organizations (NFK). Both foundations were founded by

promoting improved awareness, research and education into cancer of

relatives of PTO patients, Carin van der Heijden and Hederik de Vries.

unknown primary (CUP). Tanya is co- founder of world cancer of unknown

Carin himself initiated the first website with information about PTO.

primary week www.worldcupawareness.org working with global experts,

Mission Tumor Unknown is affiliated with the Platform Rare Cancers

patients, health care professionals, researchers and industry to promote

of the NFK. Stars Foundation rolls up its sleeves for: more information

education, awareness and research into CUP. Tanya has written published

about PTO and provide palliative care for PTO patients and attention

articles and a white paper on the unmet needs of patients with cancer of

to the problems of their loved ones.

unknown primary and has presented at many CUP international conferences.

The Friends of Hederik Foundation was established on May 15, 2020 in

Tanya is a board member of 'From Testing to Targeted Treatments'. FT3 is a

memory of our beloved and good friend Hederik de Vries, who passed

global initiative to help ensure access to precision medicine for all those that

away on January 12, 2019 at the age of 32 from the consequences of

need it www.fromtestingtotargetedtreatments.org

PTO. The Friends of Hederik Foundation is a CBF-recognized charity.

Endorsed by

Supported & Sponsored

#MAKETHEMYSTERYHISTORY

thank you worldcupawareness.org