Patient Meeting Presentations
Research into Neuroendocrine Tumours – a presentation given by Dr Christos Toumpanakis on World NET Cancer Day 10th November 2011. Available to download in four parts: Part I, Part II, Part III, Part IV
Familial Syndromes and Neuroendocrine Tumours – a presentation given by Prof Ashley Grossman on World NET Cancer Day 10th November 2011. Available to download here.
Presentation on NETs and trials by Dr Pippa Corrie given in Cambridge on 10 September 2011, available to download here.
Presentation on Nuclear medicine given by John Buscombe in Cambridge on 10 September 2011, available to download here.
On the web
NETipedia: A more advanced complement to PubMed aimed to improve knowledge & education. It is an information tool structured according to the concepts of “from detail to overview” and “from bench to bedside”.
Extensive understanding of tumors is a prerequisite for correct diagnosis and treatment. Increased knowledge about different molecules relation to neuroendocrine tumors in combination with a preclinical to clinical perspective will improve our possibilities to utilize them as diagnostic, prognostic and/or therapeutic entities.
The NETipedia project is set to create a free of charge knowledge web database. The database gathers, structures and shares information related to an understanding of NETs. It enables anyone to add or comment on information in the database. All scientific statements or information will require references (published or unpublished). Several connections with high class public databases will be available to facilitate information gathering. NETipedia is a new and state of the art information project to improve the possibility to analyze research information.
Please note that NETipedia is aimed principally at researchers in the field of NETs. Patients and their families may find some of the information upsetting.
To visit NETipedia, go to www.netipedia.org
Rarer Cancers Report – a report compiled by the Specialised Healthcare Alliance. This draws heavily on the discussion and conclusions from a rarer cancers stakeholder workshop held on 31st March 2011 which was organised by the Alliance and the National Cancer Action Team.
The following article appeared in the British Medical Journal in August 2010. It highlights some of the issues surrounding the diagnosis of carcinoid syndrome.
Many thanks to Chris Bunting, who has recommended the following articles as interesting reading:
- Cancer.NET overview of NETs
- NHS Guide to Gastrointestinal Neuroendocrine and Carcinoid Tumours
- Annals of Oncology – Symposium Article on NETs
- Annals of Gastroenterology – Biology and Management of Gastric NETs
- The Oncologist – Carcinoid Tumours
- American Journal of Roentgenology – Carcinoid Tumours of the Stomach
- Multidisciplinary Symposium – Neuroendocrine Tumours
- Carcinoid Foundation – A Review of Carcinoid Disease
- National Cancer Institute – Gastrointestinal Carcinoid Tumors Treatment
- Macmillan – Carcinoid Tumours
Access to Interim Cancer Drugs Fund (ICDF) – East Midlands
The Rarer Cancers Foundation has produced a new factsheet explaining arrangement for accessing the Interim Cancer Drugs Fund (ICDF) in the East Midlands. Download the factsheet here.
The Kidney Cancer Support Network has a fantastic section on PCT Drug Funding including advice and downloadable templates.
Before contacting travel insurance companies you may find it helpful to prepare by having certain information ready. Continue reading →
What books have you found helpful?
Unbreakable by Lindsey Hunter
Published by HarperCollins, priced £12.99 and tells the story of Lindsey and her ‘Prince Charming’ the snooker star Paul Hunter through their young romance to his death from NETs at the age of just 26.You can read Lindsey’s recent account of her husband’s illness in the Daily Mail.
Contact us with a book review.
Many thanks to Tim Cahill, who has provided us with the following list of books that he has found helpful:
- The Anatomy of Hope, by Dr Jerome Groopman, published by Simon and Schuster, 2004
- Love, Medicine and Miracles, by Dr Bernie Siegel, published Rider, 1999
- It’s Not About the Bike, by Lance Armstrong, published by Yellow Jersey Press, 2001
I have also found these books very useful:
- Fighting Cancer from Within, by Dr Martin L. Rossman, published by Henry Holt & Company, 2003
- What to Eat if You Have Cancer, by Maureen Keane and Daniella Chace, published by Contemporary Books, 1996
ISBN:0-8092-3261-8 – a guide to adding nutritional therapy to your treatment plan
- The Power of Food – Cancer: Food, Facts and Recipes, by Dr Clare Shaw (recipes by Sara Lewis), published by Hamlyn, 2005
ISBN: 0-600-61110-8 – written in collaboration with the Royal Marsden Hospital, London
- How to Prevent and Treat Cancer with Natural Medicine, by Dr Michael Murray, Dr Tim Birdsall, Dr Joseph E. Pizzorno and Dr Paul Reilly, published by The Berkley Publishing Group, 2002
- Guided Imagery for Self-Healing, by Dr Martin L Rossman, published by H J Kramer, 2000
- Learned Optimism: How to change your mind and your life, by Martin Seligman, published by Pocket Books
- Anatomy of an Illness: As perceived By the Patient, by Norman Cousins, published by W W Norton & Company, 1979
- Cancer Fitness, by Anna L. Schwartz, published by Fireside,2004 ISBN: 0-7432-3801-X
- The Importance of Living, by Lin Yutang, published by William Heinemann Ltd, 1938
- The Cancer Directory, by Dr Rosy Daniel, published by HarperThorsons, 2005
- Man’s Search for Meaning, by Victor Frankl, published by 2004 by Random House
- The Okinawa Diet Plan, by Bradley Wilcox, Craig Wilcox and Makoto Suzuki, published by Three Rivers Press, 2004
Another Kid in the Kitchen: Recipes for Kids to Eat and Make.
Proceeds from this book go to the “Quiet Cancer Appeal” at the Royal Free Hospital.
What can I do to help? – Deborah Hutton
Peter Gwilliam, the husband of the late Liddy Oldroyd says Deborah Hutton’s book contains ‘invaluable practical information’ for everyone who knows a cancer patient.
Peter was a friend of the late author, who had been a close friend of his own late wife, Liddy and had been a great support through Liddy’s illness.
Peter, a founder of Living with Carcinoid, writes:
“Deborah Hutton and Liddy were at York University together. Debs went on to become health and beauty editor at Vogue magazine, while Liddy went on to become a TV comedy director, winning numerous awards for her work.
In November 2004 Debs was diagnosed with lung cancer – she gave up smoking 23 years prior – and she died in July 2005. But she wrote this book in that time. It provides excellent practical examples of how friends and family can help to make a really substantial difference after a cancer diagnosis.
The book – What Can I Do to Help?- contains contributions from a host of celebrities, politicians and people with high profile. She was very well connected, and able to gather this wonderful advice in a very short time.
The book was launched at the Palace of Westminster, residence of Lord Charlie Falconer, just days before she died. PM Tony Blair attended and even though she was very ill she spent 15 minutes talking to him about the perils of teenage smoking.
Sadly she died soon afterwards but there was another legacy – an Internet blog diary she wrote about her experiences of diagnosis and treatment contained some sensational pieces of writing.”