Useful contacts
Jo's Friends like:
About Health. This US website includes cancer information.
Cancer Care. Another US website. Very helpful on side effects of chemotherapy, amongst other resources.
Cancer emergency response tool. An 'app' for Android phones to help those on chemo (developed by Dr Richard Osborne).
Cancer Options. Cancer Options is a private consultancy where (for a fee) you can obtain guidance on orthodox, complementary and integrative cancer treatments and therapies. Services are available through the charities Yes to Life and The Holly Eatwell Trust, for those that would like to explore an integrative approach but may not have the financial resources.
Cancer Research UK. Their site has a wealth of information about cancer and research. CancerHelp UK at www.cancerhelp.org.uk is the patient website of Cancer Research UK. They have a specialist nurse helpline, and a database of cancer trials in the UK.
Carers Direct (NHS). Carers Direct is a national information, advice and support service for carers in England. Available online at www.nhs.uk/carersdirect and as a free, confidential helpline seven days a week on 0808 802 0202, it provides accurate, relevant information for carers and those who support them.
Counselling Directory. The purpose of the site is to enable those in distress to find a counsellor close to them and appropriate for their needs.
CUP Action - Cancer of Unknown Primary Inc. This is a site to let people know what is happening about CUP in Australia. It also helps connect people who are affected by CUP. www.actiononunknownprimary.org
Macmillan Cancer Support. This large UK charity seek to improve the lives of people affected by cancer by providing practical, medical, emotional and financial support. (In 2008 Cancerbackup became part of Macmillan). They provide information on cancer and its treatments through a website and telephone support manned by nurses. They also publish useful free booklets. Jo's friends collaborated with Macmillan on the booklet Understanding Cancer of Unknown Primary (ref: MAC11689) which can be found and ordered here . We would recommend also their book entitled: Recipes. This advises on poor appetite and weight loss as well as giving details of nutritional supplements and snacks and recipes.
Marie Curie Cancer Care - They provide free nursing care to terminally ill patients to allow them to die at home.
Maggie’s Centres. The aim of Maggie's Centres is to help people with cancer to be as healthy in mind and body as possible and enable them to make their own contribution to their medical treatment and recovery. There are patient "havens" in friendly and innovative buildings close to major cancer hospitals in: Edinburgh, Glasgow, Dundee, Highlands, Fife, Lanarkshire, Nottingham, Oxford, Cambridge, London, Cotswolds, Swansea. They overcome Plato's concern that in the treatment of the human body," physicians separate the soul from the body."
Penny Brohn Cancer Care. (the new name for Bristol Cancer Help Centre). The Bristol Approach is a combination of complementary therapies and self-help techniques. It is designed to work alongside medical treatment.
Sarcoma UK - They offer information & support about Sarcoma and its treatment in the UK. A small number of those initially diagnosed as CUP may be found to be Sarcoma.
Sue Ryder Care. Sue Ryder specialise in palliative and neurological care maximising and supporting patient choice and independence.
Travel insurance companies for people undergoing cancer treatment. We have no particular recommendations but know that this is often problematic. Have a look at: insurecancer.com; free-spirit.com; avanti.co.uk; all cleartravel.co.uk; insurancewith.com; freedominsure.co.uk; jdtravelinsurance.co.uk; world-first.co.uk.
The Princess Royal Trust for Carers. The Princess Royal Trust for Carers is the largest provider of comprehensive carers support services in the UK.
The Brigitte Trust. The Brigitte Trust offer emotional support and practical help to the whole family when a life-threatening condition is diagnosed, and up to twelve weeks bereavement support. Working in Surrey with a sister organisation, Hospice Home Support in West Surrey/Hampshire.
The Stroud Foundation. A US - based organisation raising awareness of CUP which includes a forum for patients and carers to interact.
If you value an organisation or website not listed here that could be of use to others please e-mail us. If you want to add a brief sentence by way of support we may add it e.g. “Organisation X proved enormously helpful in encouraging me to find something my husband could taste and gain nutrition from”. Mrs Y of Edinburgh.
Message board
If you have a useful publication to add to the list or a term to add to the dictionary please contact us with your suggestion.
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Endorsements
When teaching junior oncologists I have encouraged them to look at your effective website. Dr Simon Grumett, Consultant & Honorary Senior Lecturer in Medical Oncology
Thanks for your help. My family, son is also a doctor, have found it an invaluable resource from day 1 [of my husband’s CUP diagnosis]. Gillian (UK GP)
This is an excellent resource for patients and relatives. Keep up the good work!
Dr. David Farrugia. Consultant Medical Oncologist
This website is a fantastic resource.
Dr Maurice Slevin, Medical Oncologist
Not only is the website an essential resource but the Foundation has been instrumental in bringing together experts from across the world and encouraging the development of research to improve the outcomes of patients with CUP. Dr Andrew Fowell, Macmillan Consultant in Palliative Medicine
Your website is such a good way of providing information that empowers the patient/carer.
Anne (former CUP patient)
A valuable patient support organisation that advocates much needed research and change for this neglected group.
Prof. Orest Mulka (former GP)
Already a fantastic achievement as a resource!!!
Dr. H Wasan, Consultant and Reader in Medical Oncology
Many congratulations on establishing such a superb website. Dr Robert H Phillips, Consultant Radiotherapist and Physician 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
Your website and John were my life line when I was diagnosed with CUP in 2009. Jane, Australia.
You have established an important island in the UK which I hope grows with support from many.
Dr Tony Greco, Director of the Sarah Cannon Cancer Center