Latest Press Release [29 Oct 2012]
Cancer of Unknown Primary Foundation – Jo’s friends welcomes the latest step forward in the battle for better treatment of CUP patients.
National cancer charity, Cancer of Unknown Primary Foundation – Jo’s friends have welcomed the publication (24 October 2012) of the Cancer of Unknown Primary Peer Review Measures by the National Cancer Action Team. The Measures give ‘teeth’ to the NICE 2010 Guideline on CUP.
Charity Director John Symons said:
“Hospitals treating CUP patients in England will be subject to peer review for their compliance to the Measures and this marks a welcome advance for CUP patients in their challenging pathway. The introduction of the CUP Guideline in 2010 has already created a significant step forward because it gives treating clinicians an evidence- based approach to the management of this complex condition. Until the introduction of the NICE Guideline, a patient presenting with CUP suffered from ad hoc approaches as cancer networks sought to do their best for the patient with little support or understanding. The patient was often “bounced” between different site-specific Multi Disciplinary Teams (MDT) as each tried to find a primary site of the cancer with a multitude of tests. Now CUP patients in England and Wales should be treated by a specialist CUP MDT with focused expertise. The Guideline with the addition of the Measures is a very significant and welcome step forward for enhancing treatment.”
Dr Richard J. Osborne MD FRCP, consultant in medical oncology at the Dorset Cancer Centre and the lead clinician for the NICE Guideline on CUP said:
“The inclusion of CUP Measures in the Manual of Cancer Services marks another stage in the development of this care pathway by recognising that treatment and care for CUP patients should be as good as for those patients diagnosed with site specific cancers.”
What is CUP?
Cancer of Unknown Primary (CUP) is hidden cancer. The term is applied when a patient is diagnosed as having cancer which has spread, but its origin cannot be identified. This makes treatment, which is based on the profile of the primary cancer, extremely difficult.
- Patients suffer the double agony of a cancer diagnosis with the added distress of not being able to explain the origin of their cancer.
To see the content of our latest 5-fold information brochure click here. Click here for access to published articles, authored by Jo's friends, and other information resources. Contact us if you require further particulars.
Why Jo's friends?
Jo’s friends was established in memory of Jo Symons who died of CUP in September 2006, a few days after her 46th birthday. To her family and friends it seemed incomprehensible that, in the 21st century, it was not possible to make a primary diagnosis and that little was being done to promote awareness and research; or to offer information and support to CUP patients and their carers.
- Jo’s friends has been in existence since may 2007 and has quickly filled the gap that existed for patient information and support. The charity acts also as an advocate for those affected by this unknown disease.
- The Cancer of Unknown Primary Foundation - Jo's friends is a Registered Charity (No: 1119380)
CUP incidence and further explanation
CUP is one of the 10 most commonly diagnosed cancers and the 4th commonest cause of cancer mortality. It represents about 4% of cancer incidence affecting some 12,000 people in the UK each year.
- CUP biology is not understood other than that the primary cancer stays small or disappears, yet the cancer spreads unpredictably, often to more than one organ.
- Most CUP definitions are of carcinoma of unknown primary where (unlike sarcoma, lymphoma and melanoma) further distinctions are needed to achieve effective treatment.
- Because the cancer cells have lost their unique features in the cancer spread, identifying the original cancer cells (the target of chemotherapy) is difficult.
- The primary cancer may remain hidden during treatment (and at post mortem). This makes CUP a challenging diagnosis for both doctor and patient.
- There are few standard treatments, because the cancer is likely to be different for every patient, with widely different outcomes. Some of those who have a provisional CUP diagnosis may be treated successfully.
- Life expectancy of those with confirmed CUP rarely extends beyond 8 months. For some, it is a matter of weeks.
Problems with this orphan disease
- Doctors lack understanding of the disease and patients presenting with CUP do not have the medical and other benefits available to those with site-specific cancer.
- There is a lack of research into CUP or even agreed definitions of the disease.
What do CUP patients need?
- Rapid identification with early and appropriate specialist involvement
- Efficient arrangements to manage the initial diagnostic investigations without delay
- Support and information about CUP
- Early involvement of specialist palliative care.
What do the CUP Foundation - Jo's friends do?
Our mission is to Make the Unknown, Known by:
- Providing information & support to CUP patients and their carers.
- Raising awareness of CUP.
- Promoting research that improves diagnosis and treatment leading to the end of CUP.
Some examples of our work
- Jo's friends website – www.cupfoundjo.org – provides essential information for patients and carers. Each month we are accessed by people from 20-40 countries. The site includes a moderated area for people affected by CUP to interact.
- Jo’s friends has worked with Macmillan Cancer Support to produce a free booklet on CUP for distribution to cancer centres throughout the UK.
- Raising awareness of a disease that has a very low profile is the precursor of stimulating demand for change and the funds for research. We have published articles in medical magazines, and have been the subject of features in the New York Times and on CNN.
- In 2008 the NHS through NICE initiated the development of a Guideline for the management and treatment of CUP. Jo’s friends was a stakeholder and the Director was a member of the Guideline Development Group.
- Jo's friends have joined with Southampton University and others to research the experiences of CUP patients, their carers and treating physicians.
- Jo’s friends is supporting a 3 year multi-centre, Phase II trial (CUP-One) testing diagnostic approaches and treatment of patients in a project funded by Cancer Research UK.
- In 2009, and again in 2012, Jo's friends brought together CUP experts from around the world for a conference on CUP.
Pan Macmillan, one of the largest general book publishers in the UK, has Jo's friends as their nominated charity.
Some patient endorsements
At first I was tired of answering the questions about CUP .. but this website has helped me realize that the world needs to know about us.
Your site is so great. I have a hard road ahead but feel calmer now that I've started a targeted chemo treatment. I fully understand the importance of your website and help.
Soon after my diagnosis my daughter contacted you and you were kind and gave her hope.
What a brilliant site, it provides a light in the grey world of CUP.
Your website is such a good way of providing information that empowers the patient/carer.
Thank God for this forum! I cried when I found it! Have to say that the immense relief that I have obtained so far from just reading everyone’s stories on this site is incredible. Up to this point I have felt so very alone as no one could give me any advice, nothing to read, nothing to comfort me as I flounder in this no man's land called CUP!
I also want to thank you personally for setting up the website and this forum, I feel empowered!
Some medical practitioner endorsements
CUP is a neglected area. I am delighted to support the work of Jo's friends. This website is a fantastic resource. Dr Maurice Slevin, Medical Oncologist
You have established an important island in the UK which I hope grows with support from many. Dr Tony Greco, Director of Sarah Cannon Cancer Center - USA.
Already a fantastic achievement as a resource!!! Dr. H Wasan, Consultant and Hon Senior Lecturer in Medical Oncology.
This site provides much needed and accessible help for CUP patients and their loved ones - I'm very, very impressed. Nicola James
Macmillan Nurse Consultant
Phil’s half marathon, with a matching donation from employer HBOS, raises some £2,000
The Wilson family present money raised in memory of Tracy.
Photo: The Mansfield Chad and Hucknall Dispatch.
Teas on the Green - Brockham.
Hundreds of cups of tea provided with information about Jo's friends.