Category Archives: Contacts

Finding Centres in Europe

Some helpful Cancer contact sites

 

United Nations World Health Organisation logo

United Nations World Health Organisation logo (Photo credit: Wikipedia)

 

 

These are some sites that provide helpful information when you are Googling to find somewhere for treatment.

 

Listing these sites does not constitute any kind of recommendation.

 

But readers will find a huge amount of information listing contacts at various centres abroad.

 

Most of the sites are written in English, or have a translation button to click on.

 

Organisation of European Cancer Institutes (OECI)

 

http://www.oeci.eu/

 

Under ‘Membership’ on the OECI website, there is a geographical breakdown:  e.g. 11 members are listed for France.

 

The Cancer Index website

 

http://www.cancerindex.org/clinks5f.htm

 

has a list of 22 French cancer resources here

 

Canceractive website

 

http://www.canceractive.com/cancer-active-page-link.aspx?n=435&Title=Centres%20of%20Excellence

Five ‘top’ cancer treatment centres are listed here;  one is the Institut Gustave Roussey in French, which treats many, many top politicians and VIPs from other countries.

Europa Donna

www.europadonna.org

EUROPA DONNA (ED), the European Breast Cancer Coalition, is an independent non-profit organisation whose members representing 46 countries are affiliated groups from countries throughout Europe.   The Coalition works to raise awareness of breast cancer and to mobilise the support of European women in pressing for improved breast cancer education, appropriate screening, optimal treatment and increased funding for research. ED represents the interests of European women regarding breast cancer to local and national authorities as well as to institutions of the EU.  Currently they are engaged in forming a list of recognised breast cancer treatment centres throughout Europe.

The International Agency for Research on Cancer

 

http://www.iarc.fr/

 

IARC is part of the World Health Organization, and provides an international perception.  They have a page dedicated to a series of ‘useful links’ on cancer organisations.  This is principally of interest to doctors and nurses working in oncology – but if you are an  ‘informed patient’ you might find just the data you are looking for!

 

IARC’s mission is to coordinate and conduct research on the causes of human cancer, the mechanisms of carcinogenesis, and to develop scientific strategies for cancer prevention and control. The Agency is involved in both epidemiological and laboratory research and disseminates scientific information through publications, meetings, courses, and fellowships.

 

They issue very useful and interesting monthly News alerts.  This is an extract from one such alert:

 

1.  IARC Scientific Publication No 163 – Molecular Epidemiology: Principles and Practices
01/04/2012 -
Molecular Epidemiology: Principles and Practices
IARC Scientific Publication No 163
Edited by Nathaniel Rothman, Pierre Hainaut, Paul Schulte, Martyn Smith, Paolo Boffetta and Frederica Perera.  This book captures the fascinating developments and provides an extended, forward-looking vision of the principles, practice and impact of Molecular Epidemiology. Written and coordinated by world leaders in the field, the book covers, in a systematic way, the major conceptual advances, with a strong emphasis on study design and on how to incorporate biomarker studies into epidemiology practice.  Read more , Order at WHO Press

 

2.  We are pleased to announce the publication of a list of carcinogenic agents – by cancer site – with sufficient or limited evidence in humans. The list will be updated regularly as new classifications are announced.

 

See List of Classifications by Cancer Site , IARC Monographs website
IARC Latin America Collaboration

 

3.  The directors of national cancer institutions from 15 Latin American countries met in Lyon in March 2012 under the initiative of the International Agency for Research on Cancer (IARC), to discuss the current status of research on cancer prevention and control in the region.

 

4.  The Lancet – Cancer mortality in India: a nationally representative survey
This landmark study, as well as providing a unique snapshot of the current Indian situation with respect to cancer mortality, paves the way for other emerging economies to implement similar systems in settings where the civil death registration systems (CRS) are either non-existent or too weak to provide reliable information on the numbers and causes of deaths.

 

Cancer mortality in India: a nationally representative survey.
R Dikshit, P C Gupta, C Ramasundarahettige, V Gajalakshmi, L Aleksandrowicz, R Badwe, R Kumar, S Roy, W Suraweera, F Bray, M Mallath, P K Singh, D N Sinha, A S Shet, H Gelband, P Jha, for the Million Death Study Collaborators
The Lancet, Early Online Publication, 28 March 2012 doi:10.1016/S0140-6736(12)60358-4

 

5.  El Espectador – Una vez más la salud en crisis
Interview of Dr Chris Wild for the Colombian newspaper El Espectador: Health in crisis, once again.
Read more (available only in Spanish) , Website El Espectador

 

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Blogs and other web information

Where to find kindred spirits

 

There comes a time in all our lives when we are spitting about lack of help and/or information we can find from health professionals.

In Britain, everyone from drug companies to nurses abdicates responsibility and says, “ask your GP”.  So when your GP has just told you, “you know more about cancer than I do”, one of these websites might be able to deflect anger – and even give you helpful information.

So before you send an email in UPPER CASE, click on one or two of the addresses below:

 

A BETTER NHS   Written by an NHS doctor, this has been set up to inform twitterers and others about the real scandal going on with the NHS, which is its conversion into a pre-1948 (start of the NHS) market economy as a result of steady lobbying from UK and US private health insurers.    www.abetternhs.wordpress.com

 

DANA-FARBER  My favcurite American Cancer Hospital has launched Insight, a blog providing expert commentary on the latest news in cancer research and care, and insight on issues relevant to cancer patients and their families. Dana-Farber is the first New England hospital to publish a blog that focuses exclusively on cancer-related topics, and will cover the latest scientific advances and treatment options, practical tips for patients and families coping with cancer, and patient stories. It will also feature on-the-scene commentary from some of the nation’s largest medical conferences.   www.dana-farber.org  then key Insight into search window.

 

GERMAN website:   for German readers  – www.medien-doktor.de 

 

GOOGLE SCHOLAR  A good source of medical information when you need details of clinical trials, and other stuff to shove under doctor’s noses when they turn them up because you aren’t medically qualified.   www.scholar.google.com

 

THE JOBBING DOCTOR    The Jobbing Doctor is a GP working in a large industrialised conurbation outside London. It is the online diary of an average doctor.    www.thejobbingdoctor.blogspot.com

                                                                                                                                                                                                                                              ROY LILLEY, well-known as a blogger extraordinaire, edits www.nhsmanagers.netHis comments are always to the point (although Cameron and Lansley must wince when they get a digest), and I often laugh out loud when I read this.

 

MAMMOGRAMS  There is a huge debate going on in medical circles about to screen – or not to screen.  i am NOT medically qualified, but if you want to find out about information not to screen,  Mitzi Blennerhassett has a very informative blog about screening mammography at www.evenstarsexplode.wordpress.com

 

MEDICAL LESSONS is a serious blog, really aimed at doctors, but worth reading because if you happen to have what it’s blogging about, you learn an awful lot!   http://www.medicallessons.net/

 

JUDITH POTTS   Judith was an actress, had breast cancer, and now produces a lively blog for the Telegraph  http://blogs.telegraph.co.uk/news/judithpotts/100140789/nhs-improvement-helping-change-cancer-care-in-britain/

 

PUBMED  This site comprises more than 21 million citations for biomedical literature from MEDLINE, life science journals, and online books. Citations may include links to full-text content from PubMed Central and publisher web sites.  Doctors use this, so they can’t turn up their noses if you cite PubMed as your source.  And, what doctors in UK don’t tell you, it is an American site, set up and run under US Government.   So info is really up-to-date.  http://www.ncbi.nlm.nih.gov/pubmed/

 

THE CANCER MADE ME DO IT  It’s Carol’s blog, and she has no hesitation in taking on High School kids who laugh at her strange headgear, or so-called friends who discuss her medical condition and think she can’t hear – right in front of them.  We can all remember ‘friends’ who utter crass statements;  when this happens, just log on to this website and have a wry laugh.  www.thecancermademedoit.com

 

And if you know a good blog – add it to the Comments box please.

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CONTACTS AROUND THE WORLD

Overseas cancer organisations


This is a list of cancer organisations in countries outside the UK, provided by Cancer Research UK, and other organisations.

I haven’t contacted ALL of these organisations, so please check!

I use this list frequently -

  • when I receive a press release about some research carried out in another country, I go through to relevant organisation and ask if they have any info.
  • when a reader asks about something happening in another country;  recently I probably saved one reader over £4,000 – he had had official-looking  and reassuring correspondence with someone – who, thanks to contacts with cancer society in their country, turned out to be a complete charlatan.
  • you can check with the relevant society if you want more information, and verify if it is accurate

Organisations very enormously in size, so if you ask for help take this into account.  Smaller organisations might be a one-person office supervised by an unpaid volunteer, so don’t ask for a huge amount of information that could take a long time to answer.
The Cancer Council Australia
Provides telephone, email and online information in English for people with cancer.                                                          website: www.cancer.org.au
Email: info@cancer.org.au
Phone: (02) 8063 4100
Helpline: 13 11 20 (Mon-Fri 9.00am-5.00pm – local rate)

The Barbados Cancer Society
Provides counselling to patients and their relatives, and has a hospice outreach program to support patients at their homes. Also provides information on early detection and prevention of cancer.                                                                  Phone: (246) 436 8888 or 427 9005
Email: info@barbadoscancersociety.com
Website: www.barbadoscancersociety.com

Belgium
Fondation Contre le Cancer (Foundation Against Cancer)
Provides support to people with cancer in French.                                                                                                                               Website: www.cancer.be
Phone: 0800 15 801 (Monday 9am – 7pm, Tuesday to Friday 9am to 1pm)

The Canadian Cancer Society
Provides telephone, email and online information in French and English for people with cancer.                                  Website: www.cancer.ca
Email: info@cis.cancer.ca
Phone: 1 888 939 3333 or (416) 961 7223

China
The Hong Kong Anti-Cancer Society
Provides comprehensive online information in Chinese for cancer patients and their caregivers.

Website: www.hkacs.org.hk
Email: admin@hkacs.org.hk
Phone: (852) 3921 3821

The Cyprus Anti-Cancer Society
Provides support and care for people with cancer at their homes. Information provided in Greek and English. The website includes local contact telephone numbers.

Website: www.anticancersociety.org.cy
Email: info@anticancersociety.org.cy
Czech Republic
Liga Proti Rakovine Praha (League Against Cancer Prague)
Provides information to cancer patients in Czech.

Website: www.lpr.cz/
Email: lpr@lpr.cz
Phone: 224 919 732 or 224 920 935
Kræftens Bekæmpelse (Danish Cancer Society)
Provides information for cancer patients in Danish.

Website: www.cancer.dk
Email: info@cancer.dk
Phone: 80 30 10 30

Eesti Vähiliit (Estonian Cancer Society)
Provides information and support for people with cancer. Information on their website is in Estonian, Russian and English.

Website: www.cancer.ee
Email: info@cancer.ee
Phone: 0 800 2233 (Mon-Fri, 10.00am-12.00; 6.00-8.00pm)

Syöpäjärjestöt Finnish Cancer Organisations / Cancer Society of Finland
Provides information and support for people with cancer in Finnish, Swedish and English.

Website: www.cancer.fi
Email: society@cancer.fi
Phone: 0800 19414 or (358) 9 135 331

France
Fédération Nationale des Centres de Lutte Contre Le Cancer (FNCLCC)
(The National Federation of French Cancer Centres)
Provides online information for people with cancer in French.

Website: www.fnclcc.fr
Email: infocom@fnclcc.fr

Ligue Nationale contre le Cancer (National League Against Cancer)
Provides information for people with cancer in French.

Website: www.ligue-cancer.asso.fr
Email: aidea@ligue-cancer.net
Phone: 0810 111 101 (Monday to Friday, 8am to 8pm)

Cancer Support France
Provides support in English to people in France.

Website: www.cancersupportfrance.info
Forum: www.csf-forum.org
Email: cancersupportfrance@orange.fr
Phone: 05 45 893005 (10.00 to 12.30. They also have an answer phone and aim to return calls within 24 hours)

Deutsche Krebshilfe (German Cancer Aid)
Provides advice and information for people with cancer in German, including booklets that you can download from the website.

Website: www.krebshilfe.de/
Email: deutsche@krebshilfe.de


Greece
The Hellenic Cancer Society
Provides information and support for cancer patients. The information on their website is in Greek and English.

Website: www.add.gr/org/hc/index.html
Open Telephone Line: (210) 64 01 200 (8.00am – 8.00pm, for cancer information)

Krabbameinsfélagið (The Icelandic Cancer Society)
Provides information and support to people with cancer. The information on their website is in Icelandic.

Website: www.krabb.is
Phone: (354) 540 1900
India
Cancer Patients Aid Association
Provides information and support to people with cancer. Has branches in several cities; website has local contact details. Information on their website is in English.

Website: www.cpaaindia.org
The Indian Cancer Society
The society provides food, medicines, transport, prostheses and counselling to cancer patients. It has branches and affiliated groups in many towns and cities. Information on their website is in English.

Website: www.indiancancersociety.org/
Email: info@indiancancersociety.org
Phone: 91-22-2202 9941 / 2202 9942

The Irish Cancer Society
Provides support and information in English to patients with cancer.

Website: www.cancer.ie
Email: helpline@irishcancer.ie
Helpline: 1 800 200 700 (Mon-Thurs 9.00am-7.00pm; Fri 9.00am-5.00pm)
Israel Cancer Association
Funds research and provides information and support to cancer patients. Information is provided in Hebrew, English, Arabic and Russian.

Website: www.cancer.org.il/
Phone: 1 800 599 995 or (972) 3 5721616

Italy
Associazione Italiana Malati di Cancro (AIMaC)
Provides information in Italian and support to cancer patients, their families and friends.

Website: www.aimac.it
Email. info@aimac.it
Phone: 840 503579 (free)

Jamaican Cancer Society
Provides information and support for people with cancer.

Website: www.jamaicacancersociety.org
Email: mail@jamaicacancersociety.org
Jordan
King Hussein Cancer Center (KHCC)
A cancer treatment centre that also provides online information in English about common types of cancer. Most of the information on their website comes from links to the US National Cancer Institute website.

Website: www.khcc.jo
Email: info@khcc.jo
Hotline (free): 0800 22 66 2 (8am to 5pm, Saturday to Wednesday)

Lebanese Cancer Society
A professional and volunteer organisation that has a website in English. Cancer information on the website is provided via links to other organisations, mostly in English and French.

Website: www.cancer.org.lb/
Email: lcs@cancer.org.lb
Phone: (961) 1 217342

Malaysia
Majlis Kanser Nasional (MAKNA) (National Cancer Council)
Provides support and information for people with cancer. They also have some cancer information in English on their website.

Website: www.makna.org.my
Email : makna@makna.org.my
Phone: (60) 3 2162 9178
Persatuan Kebangsaan Kanser Malaysia (National Cancer Society of Malaysia)
Provides an email, telephone and drop-in service for people with cancer in Bahasa, Melayu, English, Chinese and Tamil. Also runs support groups, and offers medical services.

Website: www.cancer.org.my
Email: contact@cancer.org.my
Phone: (60) 3 2698 7300

Cancer Association of Namibia
Provides information and support for people with cancer including care at home and financial advice. Also provides information through email and telephone. The information on their website is in English.

Website: www.can.org.na/
Email: canwdh@africaonline.com.na
Phone: (264) 61 237 740 or (264) 61 237 741

Cancer Society Nepal
Provides information and support for people with cancer

Website: www.cancersocietynepal.org.np
Email: csninfo@cancersocietynepal.org.np
Telephone: 977 016 22 5663
Netherlands
KWF Kankerbestrijding (The Dutch Cancer Society)
Provide online and telephone information in Dutch for people with cancer. There is also some information about the organisation in English on the website.

Website: www.kwfkankerbestrijding.nl
Email: info@kwfkankerbestrijding.nl
Phone: 0800 022 66 22


New Zealand
Cancer Society of New Zealand
Provides funding for research into the causes and treatment of cancer. They provide information in English and support for people with cancer and their families. They also have an online chat forum.

Website: www.cancernz.org.nz
Email: admin@cancer.org.nz
Phone: 0800 CANCER (0800 226 237)

Kreftforeningen (Norwegian Cancer Society)
Provide support and information for cancer patients in Norwegian.

Website: www.kreftforeningen.no
Email: servicetorget@kreftforeningen.no or kreftlinjen@kreftforeningen.no
Cancer Helpline: (47) 800 48 210 (Monday to Wednesday, 9am to 8pm, Thursday and Friday, 9am to 3pm)

Liga Portuguesa Contra o Cancro (The Portuguese Cancer League)
Provides information and support to people with cancer. All information in Portuguese.

Website: www.ligacontracancro.pt
Email: info@ligacontracancro.pt or linhacancro@ligacontracancro.pt
Phone: 351 217 221 810 or 808 255 255

Liga Româna de Cancer (The Romanian Cancer League)
Provide online information about cancer in Romanian and English.

Website: www.romaniancancerleague.org/
Email: office@romaniancancerleague.org
Phone: 40 21 314 69 33
Saudi Arabia
Saudi Cancer Society
Provides information and support for people with cancer. Information on their website is in Arabic and English.

Website: www.saudicancer.com
Phone: (966) 1 440 2006 or (966) 1 440 1771

Serbian Society for Fight against Cancer
Provides information about the prevention and treatment of cancer.

Website: www.serbiancancer.org/
Email: serbca@ncrc.ac.yu
Phone: +381 11/2656-386

Singapore Cancer Society
Provides free public cancer screening services, financial assistance, rehabilitation, support and hospice home care for cancer patients. Information on the website is in English.

Website: www.singaporecancersociety.org.sg/
Email: enquiry@singaporecancersociety.org.sg
Telephone: 65 6221 0133

Liga Proti Rakovine (League Against Cancer in Slovakia)
Provides support and information in Slovakian.

Website: www.lpr.sk
Email: lpr@lpr.sk
Phone: 421 02/52 96 51 48 (Monday to Friday, 9am to 1pm & 2pm to 4pm)

The Cancer Association of South Africa (CANSA)
Provides support and information services in English for people with cancer.

Website: www.cansa.org.za
Email: info@cansa.org.za
Helpline (free) : 0800 22 66 22 (Mon-Fri 8.00am-4.30pm)

Spain Asociación Española Contra el Cáncer (AECC)
Provides online and telephone information in Spanish for people with cancer.

Website: www.aecc.es
Phone: 900 100 036 (cancer information)
Email: informacion@aecc.es

José Carreras Leukaemia Foundation

Website: www.fcarreras.org
Provides information and support for leukaemia patients. The website is available in English and also in Spanish and Catalan.
Cancerfonden (The Swedish Cancer Society)
Provides information and support in Swedish.

Website: www.cancerfonden.se
Email: info@cancerfonden.se or infostodlinjen@cancerfonden.se
Phone: 020 59 59 59 (Monday to Friday, 9am to 1pm)

Krebsliga Schweiz (Swiss Cancer League)
Provides online and telephone information in German, French and Italian.

Website: www.krebsliga.ch/
Email: helpline@krebsliga.ch
Phone: 0800 11 88 11 (Monday to Friday, 10am to 6pm)

National Cancer Institute of Thailand
Provides information for people with cancer. The information on the website is in Thai.

Website: www.nci.go.th
USA
American Cancer Society
Provides online, email and telephone information for people with cancer in English and Spanish.                                Website: www.cancer.org Help line: 1 800 227 2345

National Cancer Institute
Coordinates, conducts and supports cancer research. They also provide online, email and telephone information in English and Spanish.

Cancertreatment.net – a very friendly-looking website where you can link up with people with same interests.  They have a large section of support links for Breast Cancer survivors.   There are also details of interesting articles for cancer survivors.                                                                                                                                                                                                Website: http://www.cancertreatment.net

Website: www.cancer.gov
Phone: 1 800 4 CANCER (1 800 422 6237) Monday to Friday, 8am to 8pm

http://breast-cancer.supportgroups.com/

Cancer Association of Zimbabwe
Provides information and support for people with cancer

Email: cancer@mweb.co.zw
Phone: 263 (0)4-705522 or 707444 or 707673

Other international cancer organisations

Union for International Cancer Control (UICC)
UICC is the world’s largest independent, non profit, non governmental association of cancer organisations. It is based in Switzerland. UICC brings together a wide range of organisations, including voluntary cancer societies, research and treatment centres, public health authorities, patient support networks and advocacy groups. The website is in English.

Website: www.uicc.org
Phone: (+41) 22 809 1811

Association of European Cancer Leagues (ECL)
ECL was created in 1980 and consists of 27 members. The objectives of the association are to improve communication and to foster collaborative activities between European cancer leagues and organisations that are members of the ECL. The website is in English.

Website: www.europeancancerleagues.org
Email: info@europeancancerleagues.org
Phone: (+32) 2 256 2000
Nordic Cancer Union

The Nordic Cancer Union is a collaboration of five countries to improve cancer control in Scandinavia. Members include Finland, Norway, Denmark, Sweden, Iceland and the Faroe Islands. Their website is in English.

Website: www.ncu.nu/
Email: info@cancerfonden.se or ncu@kreftforeningen.no
Phone: +46 8 677 10 00 or +47 815 70 477

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Helplines and useful websites for cancer patients

Using the Internet

Websites can be incredibly helpful,  and Breast Cancer Care say 74% of patients who use websites, use them as a primary source of informtion;  apparently only 11% ask their doctor first!

There are Websites set up in many countries. Many of the dud ones seem to have given up, leaving the good ones to survive.  And even doctors now acknowledge there is some good stuff out there!

You still have to be wary when you find a new website, but below are some of the useful and helpful ones I have found for HAVING FUN AFTER CANCER!  I have added notes that might help when you are looking for the right contact.

If you are in UK, it is often helpful to go to websites in other countries.  Although our charities have excellent sites, our NHS sites are sometimes not so brilliant.  So try American, Canadian, Australian and European sites (usually with an English option).

Action Cancer – for those living in Northern Ireland, there is a helpline, information, downloads and some free complimentary therapies.  028 9080 3344  www.actioncancer.org

Age Concern -even if you not an OAP, Age Concern has some of the most practical and sensible advice I have seen for coping with disabilities, benefits, etc.  You don’t have to be an OAP to take note of what they say, but if you are you will find they are incredibly helpful.  0800 00 99 66  http://www.Age concern.com/

Anaemia - also known as Anemia in US.  This can happen to us when we have to take drugs, and needs expert attention.  If you feel desperately tired, check with your doctor just in case you have this.  If you want more information, the best website I have come across is www.anemia.org

British Red Cross Depending on where you live, they offer an incredible amount of helpful services, from transporting you to medical appointments, to care in the home.  It is hard to give an overall list, as the Commissioners will assess the most important needs in their area, and try to step in and fill them.  Go to their website to find out what is available in your region. There may be a charge for some services.                                                                                                 Red Cross and Red Crescent are in countries all over the world.  See your local branch for access to their services.  http://www.redcross.org.uk

 

Breast Cancer Care 0808 800 6000 or 020 7620 0077                            www.breastcancercare.org.uk

 

Breakthrough Breast Cancer 08080 100 200 www.breakthrough.org.uk

Cancer Club’s founder, Christine Clifford Beckwith, is just my type of person.  Waking up in the middle of the night, she started to think of the humorous side of cancer, and from this came a stream of cartoons – which she has turned in to books.  She founded The Cancer Club®, an organization that specializes in marketing humorous and helpful products internationally to help people with cancer.  The club has a newsletter, and to see one of her cartoons click on Hair, Hands and Feet, and you can order these books by clicking on the Amazon icon or direct from www.cancerclub.com

Cancer Myths The Canadian Cancer website has an excellent section exploding ‘Cancer Myths’.  Look up the myth and the reality under Cancer Myths on www.cancer.ca/Canada wide and type in Myths in Search window.

Christie Hospital This hospital is probably THE leading cancer treatment hospital in Britain. There is an informative website, even if you aren’t an in-patient, and full marks to them – under Complementary Therapies they have a short list of other centres that provide these services in the area.  www.christie.nhs.uk

Clinical Trials – there is nothing to stop you, if you wish, asking to join with any trials you think might be useful. If you are treated privately, nurses have told me that they think it a shame that private patients lose out on this. Obviously you will ensure that, as far as you know, these trials are conducted in the most professional way possible – and you should be aware there is always a risk. To find out what’s going on                                        http://www.cancerhelp.org.uk/trials/trials/default.asp

Cancer Advocacy Very useful site for many pieces of info about cancer.  http://www.canceradvocacy.org/toolbox/

Cancer Counselling Trust www.cancercounselling.org.uk 020 7704 1137

Cancer Information Support Services Set up in Wales to provide Information and a Helpline.  01792-655025  www.ciss.org

Cancer Research UK 0808 800 4040  0207 7121 6699   www.cancerresearchuk.org Don’t be put off by name – this is one of most sensible and useful sites with accurate and helpful information, with with a world-wide reputation for excellence.   They have useful info also on www.cancerhelp.org.uk They also have an interesting free newsletter: subscribe by applying to  cancer.spotlight@cancer.org.uk

CARERS ORGANISATIONS IN UK:

Carers Trust (merger of the Princess Royal Trust and Crossoads Care)                      England  0844 800 4361;  Scotland  0141 221 5066;  Wales  0229 009 0087                         www.carers.org               www.youngcarers.net

Carers UK         0808 808 7777  www.carersuk.org.uk           

Crossroads Caring for Carers (Northern Ireland only)   028 9181 4455                                 www.crossroadscare.co.uk

www.chemocare.com Scott Hamilton was one of world’s top ice skaters, then    developed cancer.  He now fronts up webinformation sites such as this one.   Just about every side effect from chemo is listed, and some from hormonal drugs.  The site could be useful to print out and who any doctor who doesn’t believe your side effects could be caused by drugs.  It also gives some very sensible, albeit limited, advice on dealing with many side effect problems.

Cyclists Fighting Cancer

provide bikes, trikes and equipment to children and young people whose lives have been affected by cancer.  Their primary aim is to help children to reintegrate and rehabilitate after treatments in a fun and exciting way. Many of the Fund-raising events have a cycling theme, and if you like cycling, joining in as a good way to get exercise.

They also have a good fund-raising idea – offering a T-shirt that will stand out at sports events.  If you donate £50 or more, you get the T-shirt – and knowing human nature, someone goes onto the website to donate a tenner, but seeing the message will encourage them to be more generous!  www.cyclists.org.uk

Complaints

Trying to get a reply out of the NHS when something has gone wrong makes most patients give up – which could be said is what ‘they’ want!  However, you can have an Advocate to help you negotiate the minefield:  POhWER is an organisation that supports  you when making a complaint, has a self-help pack, puts you in touch with helpful people, and can meet you, go through paperwork and come to meetings.  0300 456 2370  www.pohwer.net

The Daisy Network. Information if you have suffered a premature menopause.  www.daisynetwork.org.uk

DANA FARBER CANCER INSTITUTE This American cancer centre, based in Boston, USA,  is acknowledged to be one of the most important cancer centres in the world, and consistently rated by doctors, patients and the press as one of best in world,  Its website is extremely helpful and there are special sections for patients written by patients!  Much of the information on my website, especially for Cancer in the News, comes via helpful contacts at this center.  And on a personal level I have found they are now the source I turn to first when I have a problem.   www.dana-farber.org More information under USA below.

DISABILITY, WELFARE RIGHTS AND BENEFITS
You are not alone if you find you are having to fight for what is lawfully your right: organisations are there to help.  When I needed the Council to do something, their response was “if we do this for you, it could set a precedent for other disabled people”. I just phoned Macmillan – they offered a grant – and although I said I didn’t need this, I used the offer to shame the Council into doing what they should be doing.                                                                                                                       The following have seen it all before, and are mines of useful information.   So phone or contact these organisations – they are incredibly helpful.

* Age Concern www.ageconcern.org.uk 0800 00 99 66                                                                                                                                  * Citizens Advice Bureau www.citizensadvice.org.uk Scotland www.cas.org.uk
* or see phone book for local number
* Disability Alliance 020 7247 8776  www.disabilityalliance.org

* Disability Law Service www.dls.org.uk 020 7791 9800
* European Disability Forum www.edf-feph.org

* Disability Now -magazine and website. www.disabilitynow.org.uk 020 7619 7323
* DISS – Disability Information Services www.diss.org.uk 01372-841 395
* RADAR www.radar.org.uk 020 7250 3222
* Community Legal Service 0845-345 4345 http://www.cl;sdirect.org.uk
* Scottish Legal Aid Board (Mon-Sun 7 anm – 11 pm) 0845-122 8686 www.slab.org.uk
* Northern Ireland Legal Services Commission 028 9040 8888 www.nilsc.org.uk
* Dept. Work and Pensions – Disabled People and Carers 0800 88 22 00 www.dwp.gov.uk
* Northern Ireland 0800 22 06 74
* Disability Living Allowance / Attendance Allowance 08457-123 456
* Carer’s Allowance 01253-856 123

General Council  for Massage Therapy www.gcmt.org.uk

La Roche Posay spa and treatment centre.  They developed the La Roche Posay skincare products, which have now been sold to L’Oreal, but are still prescribed in hospitals and have undergone over 20 clinical trials.

Look Good, Feel Better Set up by the giant Estée Lauder company, their idea has spread into countries all over the world.                                                                                                                                        Not only do they offer an afternoon of fun when patients finish their main treatment, but everyone who takes part goes off with enough make-up to last for several months! 01372-747500  www.lookgoodfeelbetter.co.uk

Lymphoedema Support Network www.lymphoedema.org 020 7351 4480

Macmillan Cancerline 0808 808 2020 www.macmillan.org.uk

Marie Curie Organisation www.mariecurie.org.uk www.mariecurie.org.uk/patientsandcarers is a direct link to patient and carer pages.   This organisation is brilliant at looking after patients needing palliative care  - but also does so much more to help cancer patients.

Medical Records : If you need to see your medical records, and find medics are being obstructive, remind them everyone is entitled to view their own health records. All competent patients may apply for access to their records under the Access to health records Act 1990 and data protection act of 1998    www.bma.org.uk

MedLaw  The MedLaw website  is a self help tool for patients to make applications and appeals for NHS funding for treatment. Information and guidance is provided on the processes to follow, the forms to complete, the evidence required and on the law.  It is written clearly, easy to understand, with a lot of sensible advice.

As they say, “many treatments are not routinely funded by the NHS and these include newer treatments for rare cancers, rare disease, and surgery. Consultants and GP on behalf of patients now have to make applications and appeals for funding under what is known as the Individual Funding Request (“IFR”) process.

For cancer patients, the Interim Cancer Drugs Fund acts as a “back stop” so you can apply to them for further funding for cancer drugs only once you have exhausted the application and appeal process”. 01752 872123 or 07812192832. www.medlaw.eu

Memorial Sloan Kettering is one of most famous cancer centres in the world.  Respected by oncologists worldwide,  it has useful, but cautious, information on http://www.mskcc.org/mskcc/html/1990.cfm (clicking on the publications box on the right side will take you to some journal articles) and http://www.mskcc.org/mskcc/html/58022.cfm

Mesothelioma Center has information on asbestos, mesothelioma, and other cancers that are caused by asbestos exposure (lung cancer, breast cancer, prostate cancer, etc.).   Their goal is to offer a one-stop resource on all asbestos and mesothelioma-related issues ranging from occupational exposure to mesothelioma treatment options.  The site has achieved HON code approval (Health On the Net (HON) and has employed a full staff of writers dedicated to research and writing about asbestos exposure and the diseases that result from exposure to the toxic mineral. In addition, their medical adviser and editor, Dr. Mauricio Salazar,M.D., who has worked in the field of cancer treatment for years, has personally reviewed, edited, and approved all medical information on the site.  (001) 407-965-5755.   www. Asbestos.com

Metastatic Breast Cancer Network gives information, education and raises awareness   www.mbcnetwork.org

National Electronic Library for Health is working with NHS libraries to develop a digital library for NHS staff, patients and the public.  www.library.nhs.uk

Moveonfromcancer.com is a very useful site set up by a Graham Cable, a cancer survivor.  www.moveonfromcancer.com

National Osteoporosis Society For  general information and charity publications phone the general enquiry line on 0845 130 3076,  but if you wish to speak to a nurse about osteoporosis contact the helpline on 0845 450 0230.

Talking to their helpline, they have an active person campaigning and talking to politicians;  this is very much needed as the way we treat this disease, compared to how it is handled in Europe, is disgraceful.    And it can help them with their work if you become a member of the National Osteoporosis Society – to join click here. Membership provides quarterly magazines to bring you up to date with all aspects of osteoporosis as well as supporting the charity’s work.   0845-450 0230  www.nos.org.uk

NHS If you want information about the NHS – What it does, how it works, and how to use it – . It also provides links through to other NHS organisations and local services.  I take no responsibility for accuracy of statements on this website!   www.nhs.uk

NHS DIRECT An on-line health encyclopaedia and self-help guide can be accessed via this website.  I found this very much depends on whom you get to talk to – but at no time did I ever get useful information about dealing sensibly with side effects – normal advice comes down to “ask your GP”.  But worth a try.   www.nhsdirect.nhs.uk

NICE National Institute for Clinical Excellence – the organisation that has to approve drugs before they can be supplied by NHS.  They nastily offer an 0845 number, but you can try the alternative contact number for main reception:  0207 045 2000 and for the Enquiry Handling team +0161 870 3002 (0900 – 1700 Monday to Friday) www.nice.org.uk

Occupational Therapy is one section of NHS which works extremely well – if only you knew about it.  OT  can provide marvellous air mattresses to make lying in bed softer and more comfortable, and when I decided it was too tiring to go in to work every day, and I would work from home, round came Craig to tell me what to do.  This included painstaking advice on the right chair – he got one company to send a trial – sent it back because it cost over £1,000 – then found Matt who works at SitSmart.  He came round, measured up, asked me what I wanted, and I have ended up with a superb chair, in colour I like (blue) and Sitsmart are going to offer a special rate if you mention this website of £136.  01892-510202  www.sitsmart.co.uk

Office of Oncology Drug Products (OODP)  http://www.fda.gov/cder/Offices/OODP/default.htm

PAC (positive free counselling service) 01373-455255

Physicians’ Guide to Clinique Products : this booklet lists ingredients in Clinique products and is invaluable for nurses and doctors who need more info on what’s in product. 01207-271209

Polio – This can affect your cancer treatment;  you may have had this as a child, and totally forgotten it. But if you are having an operation it is vitally important to inform your anaethetist – and to make sure they have read Dr. Spencer’s paper which can be supplied through the Polio Fellowship. My anaethestist totally disregarded the mention on my admission form, and as a consequence it took me about two months to recover from the anaesthetic. When I was faced with a seven-hour operation shortly afterwards at the Royal Brompton Hospital, my surgeon Mr. Mario Petrou, together with Dr. Hunter, took this on board, consulted with my polio doctor, asked me inumerable questions, and read Dr. Spencer’s paper. Result -I sailed through the op. without a single problem. More information from http://www.britishpolio.org . 0800 018 0586.

Private Treatment . Friends might tell you that you will be lonely in a private room on your own;  don’t believe it. Today you are rushed through surgery, and by the time you are waking up and feeling ‘I fancy something to eat’, the doctor comes in and says “you can go home now”. Chance would be a fine thing – but you won’t have a moment to feel lonely! To find a selection of private hospitals; www.privatehealthcare.co.uk .

Prostate Cancer hhttp://www.prostate-cancer.org.uk/info/publications_toolkit.asp

Scotland – CLAN - Helpline and support activities  01224-647000   www.clanhouse.org

The Facts About ….. This website belongs to the Cosmetic, Toiletry and Perfumery Association.  Yes, there will be lots of people who throw up hands in horror at the thought of me recommending a ‘commercial’ site.  But millions  of us who use their members’ products every day, and are grateful that their products keep skin lesions etc. at bay, will welcome the sensible, factual advice on this site about all sorts of ‘new’ words – and what they mean.   In defence of this industry, if one millionth of the things they are accused of by pressure groups came true, there wouldn’t be any skincare sold:  companies would be too scared of being sued.    www.thefactsabout.co.uk

Treatment Abroad. Over 75,000 of us went abroad for treatment last year, and if you want to find out more the company  www.treatmentabroad.net

UKONS     United Kingdom Oncology Nurses Society  has a very information website, but written – obviously for nurses, so has a lot of jargon.  However, for factual information, it is excellent.  www.ukons.org/downloads/index.html

Wahanda is a company with a website giving details of spas and beauty salones across the UK.    Some of them are mentioned on this website, some not, but if you need massage, reflexology or a facial, the Wahanda site should show you the nearest salon.  They do the marketing for many of them, and have come up with what they call MobDeals – these are sent out by email, and basically give you massage, facials, hairdos, etc. at a knockdown price.  I have just had a 90 minute massage and manicure, for which I paid £28 – and it was brilliant.  Well worth signing up for email alerts.
www.wahanda.com

Wales – Tenovus Helpline and support  029 2076 8850  www.tenovus.org

Wheelchairs – if you are having problems, or don’t know which chair to buy, this website has information from other users and was set up by John Dewar, a carer who couldn’t find information www.tell-me-first.co.uk

Work related – Telling colleagues and managers . This is a really sensible site on what and how to tell colleagues you have cancer.  http://www.cancerandcareers.org/women/share_news/how_to_tell_people_you_have_cancer/

OTHER COUNTRIES’ WEBSITES

EUROPA DONNA Over 40 countries in and around Europe belong to this organisation.  See details below.  www.europadonna.org

AUSTRALIA

Breast Cancer Network Australia http://www.bcna.org.au/

National Breast & Ovarian Cancer Centre, Australia http://www.nbcc.org.au/

Prepare To Live – P2L - is a very positive Australian website, aimed at younger people.  Watch the video of the Grim Reaper (complete with realistic and very sharp-looking scythe) being chased away by the young chemo patient.  www.preparetolive.com

National Breast Cancer Foundation, Australia http://www.nbcf.org.au/

BELGIUM Jules Bordet Institute, Boulevard de Waterloo 125,  1000 Brussels, is one of most famous cancer treatment and research centres  in the world. www.bordet.be

Canadian Breast Cancer Network – Réseau canadien du cancer du sein 331, rue Cooper Street, Suite 300, Ottawa, ON K2P 0G5   613-230-3044 ext. 222  1-800-685-8820 www.cbcn.ca

FINNISH SYMPTOM LINE EVERY cancer patient should have access to just such a helpline.   (For more information go to Good Ideas category (click on words in column on right hand side).  www.cancer.fi

FRANCE There is an excellent British-run organisation, run for ex-pat Britons by Britons.     www.cancersupportfrance.info

If you want to go to Europe for more up-to-date treatment, when you are unable to get problems sorted out here, France is probably the most sensible option;  exc ellent treatment, easy access (choice between train, ferry and car, and plane) and a seamless system that doesn’t seem to have waiting lists!  See further info under Treatment Abroad, or go to www.healthspanews.com

Warning! The French do NOT like ‘medical tourists’.  You cannot expect to turn up and wave your EHIC card if your treatment is not an emergency.

Germany A new guide to German hospitals has just been published,  called “Health Made in Germany” by UdoKessler.  It contains helpful background  for international patients, information about 50 hospitals, and details of staff.  www.treatment-in-germany.com.

USA

American Society Cancer www.cancer.org

Association of Cancer Online Resources www.acor.org

DANA FARBER CANCER CENTER This American cancer instiiture is acknowledged to be one of the most important cancer centres in the world, and its website is incredibly informative.  Much of the information in Cancer in the News comes via the incredibly helpful contacts at this center.  www.dana-farber.org

Their page for international patients includes contat information for both adult and pediatric:  http://www.dana-farber.org/pat/becoming/international/default.htm

They also have a Spanish-language site with an overview of services : http://espanol.dana-farber.org/

Dr. Susan Love is a doctor, expert in breast cancer and has an excellent website with sensible, proven information. On the site is a link to latest press releases and articles, mostly American, but that is no bad thing as they are serious about their treatment. Whilst I was being treated this was the site I turned to as being most accurate and informative. www.susanlovemd.com

National Cancer Institute . Typical excellent American Government website full of factual information, that is patient-friendly and gives accurate and sensible information.  Did you know doctors have been using radium to treat tumours since 1903? Very east-to-read diagrams. www.cancer.gov

Oncolink is an American website, written in sensible language with a wealth of information about cancer.  Sadly, their postings about side effects are somewhat dated, but still accurate – and they mention the research done in Dundee into side effects, which have been brushed under the carpet in Britain.  www.oncolink.com

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Helpful websites with cancer information from around the world

I wanna hold your hand
Hands reach out via Flickr

This isn’t just a list, but I have added notes that might help when you are looking for the right contact.

If you are in UK, it is often helpful to go to websites in other countries.  Although our charities have excellent sites, our NHS sites often are poor, and you will get much more information from American, Canadian, Australian and European sites (these are usually in English too).

FINNISH SYMPTOM LINE

This deserves top place as EVERY cancer patient should have access to just such a helpline.  www.cancer.fi For more information go to Good Ideas category (click on words in column on right hand side)

Action Cancer – for those living in Northern Ireland, there is a helpline, information, downloads and some free complimentary therapies.  028 9080 3344  www.actioncancer.org

Age Concern – has some of the most practical and sensible advice I have seen for coping with disabilities, benefits, etc.  You don’t have to be an OAP to take note of what they say, but if you are you will find they are incredibly helpful.  0800 00 99 66  http://www.Age concern.com/

American Association for Cancer Research has a zippy, informative online magazine aimed at Survivors  http://www.crmagazine.org/Pages/default.aspx

Anaemia - also known as Anemia in US.  This can happen to us when we have to take drugs, and needs expert attention.  If you get this, and want more information, the best website I have come across is www.anemia.org

www.astrazeneca.com They list some of the side effects of their cancer drugs – but I discovered a very nasty one that they knew about , but “are in the process of including in our information sheet”.

Asian Womens’ Breast Cancer Support Group

They hold meetings last Friday of month at The Kenmore Clinic,

Kenton, Harrow, Middx. HA3 9EN  http://www.awbcg.co.uk

A.I.C.R  (Association for International Cancer Research) Click on their website for links through to helpful organisations    http://www.aicr.org.uk/cancerinfo.stm

BELGIUM Jules Bordet Institute Boulevard de Waterloo, 125, 1000 Brussels is one of most famous cancer treatment and research centres  in the world. www.bordet.be

Betterdays Cancer Care was founded by Marina Raime to provide advocacy and support for women with breast cancer. The primary objective of this organization is to provide a strong support base, particularly for BME women, and an emotional safe haven for breast cancer survivors to express their fears, frustrations, and concerns.  Marina says “we provide updates of breast cancer educational information, to teach each member and non-member to take responsibility for their own health, so that they can reclaim a sense of control in their lives”. www.betterdays.uk.com

Breast Cancer Care 0808 800 6000 or 020 7620 0077 www.breastcancercare.org.uk

Breast Cancer Network Australia
http://www.bcna.org.au/
http://www.bcna.org.au/content/view/186/290/

British Red Cross Depending on where you live, they offer an incredible amount of helpful services, from transporting you to medical appointments, to care in the home.  It is hard to give an overall list, as the Commissioners will assess the most important needs in their area, and try to step in and fill them.  Go to their website to find out what is available in your region. There may be a charge for some services.                                                         http://www.redcross.org.uk/standard.asp?id=74

Red Cross and Red Crescent are in countries all over the world.  See your local branch for access to their services.

Canadian Breast Cancer Network  – Réseau canadien du cancer du sein 331, rue Cooper Street, Suite 300, Ottawa, ON K2P 0G5   613-230-3044 ext. 222  1-800-685-8820 www.cbcn.ca

Cancer BACUP 0808 800 1234 www.cancerbacup.org.uk

Cancer Club’s founder, Christine Clifford Beckwith, is just my type of person.  Waking up in the middle of the night, she started to think of the humorous side of cancer, and from this came a stream of cartoons – which she has turned in to books.  She founded The Cancer Club®, an organization that specializes in marketing humorous and helpful products internationally to help people with cancer.  The club has a newsletter, and to see one of her cartoons click on Hair, Hands and Feet, and you can order these books by clicking on the Amazon icon or direct from www.cancerclub.com

Cancer Myths The Canadian Cancer website has an excellent section exploding ‘Cancer Myths’.  Look up the myth and the reality under Cancer Myths on www.cancer.ca/Canada wide and type in Myths in Search window.

Cancer Research UK 0808 800 4040  0207 7121 6699   www.cancerresearchuk.org Don’t be put off by name – this is one of most sensible and useful sites with accurate and helpful information. They have useful info also on www.cancerhelp.org.uk They also have an interesting free newsletter: subscribe by applying to  cancer.spotlight@cancer.org.uk

Cancer Resource Centre (now known as Paul D’Auria Support Centre)   020 7924 3924 www.cancer-resource-centre.org.uk . Drop-in centre with helpful friendly people, and a very good library with information on cancer. President is Prof. Karol Sikora;  one reason why their AGM is standing-room only in a very large hall  Another is the food which always seems to be in adundance!   Currently they are running The Healing Journey programme, and offer marvellous therapies and massage to those recovering from treatment.  They were founded over 25 years ago – so much be the oldest cancer centre.

Chrysalis is the Crawley (Surrey) Breast Cancer group who meet at 7.30 every last working Monday of the month, at thePostgraduate Medical Centre, Crawley Hospital, West Green, Crawley.  www.chrysalisbreastgroup.org.uk

Clinical Trials – there is nothing to stop you, if you wish, asking to join with any trials you think might be useful. If you are treated privately, nurses have told me that they think it a shame that private patients lose out on this. Obviously you will ensure that, as far as you know, these trials are conducted in the most professional way possible – and you should be aware there is always a risk. To find out what’s going on http://www.cancerhelp.org.uk/trials/trials/default.asp
 

Complementary Medical Association 0845 129 84 34  If you are contemplating having complementary therapies, but are not quite sure … their website says:  The Complementary Medical Association is a non-profit organisation dedicated to promoting the very highest standards of complementary medicine and natural healthcare  www.the-cma.org.uk

DANA FARBER CANCER INSTITUTE This American cancer centre, based in Boston, USA,  is acknowledged to be one of the most important cancer centres in the world, and its website is extremely helpful.  Much of the information on this website, especially in Cancer in the News, comes via helpful contacts at this center.  www.dana-farber.org

More information under USA below.

DISABILITY, WELFARE RIGHTS AND BENEFITS

You are not alone if you find you are having to fight for what is lawfully your right: organisations are there to help. The following have seen it all before, and are mines of useful information. When I needed the Council to do something, their response was “if we do this for you, it could set a precedent for other disabled people”. I just phoned Macmillan – they offered a grant – and although I said I didn’t need this, I used the offer to shame the Council into doing what they should be doing. So phone or contact these organisations – they are incredibly helpful.

http://www.doh.gov.uk/cancer
Key cancer documents on this site such as the NHS Cancer Plan and the Manual of Cancer Standards.

http://www.doh.gov.uk/index.htm
Publications, information and National Electronic Library for Health

DOING RESEARCH ON INTERNET

We’ve all had the Patronising Doctor decrying information on the Internet.  To a certain extent PD can be right;  there is an enormous amount of rubbish out there, but you’ve got a brain – just be suspicious at first, and you will soon find that you develop a sense of what is right.  Elsewhere I have posted Breast Cancer Care stats about how many of us use the Internet for our information, and the good thing about the World Wide Web is there are always other sites to compare information.  One very interesting site is the http://groups.msn.com/chordoma ;

ESMO (European Society for Medical Oncology) has article on ten point Statement of Quality Cancer Care http://annonc.oxfordjournals.org/cgi/content/full/17/7/1063

EUROPA DONNA Over 40 countries in and around Europe belong to this organisation.  See details below.  www.europadonna.org

How to tell colleagues and managers . This is a really sensible site on what and how to tell colleagues you have cancer.  http://www.cancerandcareers.org/women/share_news/how_to_tell_people_you_have_cancer/

Carry on Gardening (thought this sounded fun!) www.carryongardening.org.uk 0118 988 5688

F.D.A (Food and Drug Agency) Australia, USA, UK etc. all have these agencies, who are Government funded organisations that test and check foods and medicines before they are released in that country.  Therefore if a product has been approved by an FDA agency, it has been rigorously tested.  The US agency has several interesting internet sites:

FDA: Beware Fake Cures on the Internet
http://www.fda.gov/oc/vonEschenbach/andys_take/Andys_Take_Fake_Cures.pdf

Oncology Tools http://www.fda.gov/cder/cancer/

Oncology Program http://www.fda.gov/cder/Offices/OODP/oncProgram.htm

Office of Oncology Drug Products (OODP)
http://www.fda.gov/cder/Offices/OODP/default.htm

Forums (or should it be Forii?)

Macmillans, Breast Cancer Care and the major charities have chat rooms and forums on their websites.

For example, Talking Cancer is a website where patients and carers share their experiences, and offer support and guidance.  You can connect with others 24 hours a day.  The webmaster says they are particularly interested in stories from around the world , especially on ‘after care’.    www.talkingcancer.com

France – two very helpful websites set up for English speaking visitors or residents in France, are

www.cancersupportfrance.info and www.pariscentresupport.com

Guise and Dolls

They were formed for Head and Neck Cancer patients at Guys and St. Thomas’ Hospitals in London (Florence Nightingale started St. Thomas’).  Their website is fun to navigate, and they have a moving poem from a breast cancer survivor on their site.  Good easy-to-read information about diet, and lots of fun things to click on.   www.guiseanddolls.org.uk  

Help – when you wake up in the middle of the night with heartburn, and think cancer – go to website dealing with Barrett’s Oesophagus. It is highly unlikely that you have cancer of the oesophagus, but this website is factual and reassuring. Barrett’s Oesophagus Foundation www.barrettsfoundation.org.uk or http://www.barrettsfoundation.org.uk/probe/ Nice people too.

Matt Hickey NCPEC BHScMRT PGSMed  Senior Radiotherapist, Sports Medicine Practitioner                                         CEO – INTAcare International Ltd.                                                                                                                                                                        Central Office:          49 Hedgerley Court. Woking. Surrey. England. GU21 3LZ Tel / Fax: 00 44 (0) 1483 761 619 Central Clinic:           Cromwell Hospital. London SW5 0TU. Tel: 00 44 207 460 5749 Fax 0044 270 460 5977
Email central office: matt.hickey@intacare.com
Email central clinic:  matt.hickey@cromwellhospital.com Website:                   www.intacare.com Mobile:                    00 44 (0) 7841 618 520

History The US WebMed website has a short history of discoveries related to breast cancer  http://www.webmd.com/breast-cancer/features/breast-cancer-research-milestones?page=2

La Roche Posay spa and treatment centre.  They developed the La Roche Posay skincare products, which have now been sold to L’Oreal, but are still prescribed in hospitals and have undergone over 20 clinical trials.  More information about trials on  www.la-roche-posay.info

Lanyngectomee Trust  http://www.cancerlt.org

Sara Lee Trust based in East Sussex, and offers therapies, acupuncture, massage, etc.  You need to be referred by a professional  (doctor, Macmillan or other nurse, GP, etc).                                                                                                                          25 UpperMaze Hill, St Leonards-on-Sea, East Sussex  TH38 OLB 01424-445177  www.saraleetrust.org

Living Beyond Breast Cancer. This is an American helpline and website.  http://www.lbbc.org.   (888) 753-5222

National LGBT Cancer Network (USA)  212-675-2633   www.cancer-network.org

http://www.library.nhs.uk
National Electronic Library for Health is working with NHS libraries to develop a digital library for NHS staff, patients and the public.

Look Good, Feel Better www.lookgoodfeelbetter.co.uk . Or www.lookgoodfeelbetter.com outside UK.
 

Lymphoma Assn. 0808 808 5555 www.lymphoma.org.uk

Lymphoedema Support Network www.lymphoedema.org 020 7351 4480

Macmillan Cancerline 0808 808 2020 www.macmillan.org.uk

Macmillan also say they have over 800 contact centres across UK,  Find nearest one on http://www.macmillan.org.uk/Get_Support/Cancer_support_groups/Search_Results.aspx?c=0

Maggie Centres are to be found in Edinburgh, Glasgow, Dundee, Highlands, Fife, London, Oxford, South West Wales, Lanarkshire and Hong Kong.  enquiries@maggiescentres.org 0131 537 2456                             or www.maggiescentres.org

Marie Curie Cancer Care Is one of the most helpful organisations, and also one of the UK’s largest charities, but has managed to keep its focus on why it was founded.  Founded in 1948 – the same year as the NHS – it  marks its 60th anniversary in 2008.

Employing more than 2,700 nurses, doctors and other healthcare professionals,  it provides care to around 27,000 terminally ill patients in the community and in their hospices, along with support for their families.

As services are always free of charge to patients and their families, this year they will need to raise more than £115 million.

0800 716146 (for a wide range of queries, from asking how to get a Marie Curie Nurse to getting involved in fundraising events or making a donation).

www.mariecurie.org.uk – general

www.mariecurie.org.uk/patientsandcarers is a direct link to patient and carer pages.

Medical Records : If you need to see your medical records, and find medics are being obstructive, remind them everyone is entitled to view their own health records. All competent patients may apply for access to their records under the Access to health records Act 1990 and data protection act of 1998 www.bma.org.uk

Medical Spas

Francehttp://www.cneth.org/ This  is in French, but if you want to find out names of spas dealing with skin problems, look for Dermatologie.  And use Babelfish – not brilliantly accurate, but you get the gist.

Germany :  For information in English: http://www.germany-tourism.de/ENG/destination_germany/master_tlkur-id1005.htm

Memorial Sloan Kettering is one of most famous cancer centres in the world.  Respected by oncologists worldwide,  it has useful, but cautious, information on http://www.mskcc.org/mskcc/html/1990.cfm (clicking on the publications box on the right side will take you to some journal articles) and http://www.mskcc.org/mskcc/html/58022.cfm

Move on From Cancer   is a website written by cancer survivor, Graham Cable, who is building up helpful links, information etc.  www.moveonfromcancer.com

National Cancer Institute . Typical American Government website full of factual information, patient-friendly and gives accurate and sensible information.  Did you know doctors have been using radium to treat tumours since 1903? Very east-to-read diagrams. www.cancer.gov

National Breast & Ovarian Cancer Centre, Australia
http://www.nbcc.org.au/

http://www.nbcc.org.au/resources/othersites.html

National Breast Cancer Foundation, Australia
http://www.nbcf.org.au/

http://www.nbcf.org.au/page.asp?category_id=5&page_id=6


www.nhsia.nhs.uk/cancer

Information on the National Cancer Dataset and the Cancer Waiting Times Dataset.

NICE National Institute for Clinical Excellence – the organisation that has to approve drugs before they can be supplied by NHS.  www.nice.org.uk

  www.nhs.uk
Provides information about the NHS – What it does, how it works, and how to use it. It also provides links through to other NHS organisations and local services.  I take no responsibility for accuracy of statements on this website!

www.nhsdirect.nhs.uk
An on-line health encyclopaedia and self-help guide can be accessed via this website.  I found this very much depends on whom you get to talk to – but at no time did I ever get useful information about dealing sensibly with side effects – normal advice comes down to “ask your GP”.  But worth a try.

www.nwpho.org.uk
Information available on regional health profiles, geographic data and data sets.

http://www.canceradvocacy.org/toolbox/

Very useful site for many pieces of info about cancer.

The Nutri Centre is located in the Hale Clinic in London  (opened by Prince Charles in 1988).  Centre for Complementary Medicine. it houses not only some of the UK’s most eminent practitioners, but also Europe’s leading natural medicines dispensary and an extensive Library and Bookshop on Complementary Medicine, thus integrating all the services under one roof.   http://www.nutricentre.com

Occupational Therapy is one section of NHS which works extremely well – if only you knew about it.  They can provide marvellous air mattresses to make lying in bed softer and more comfortable, and when I decided it was too tiring to go in to work every day, and I would work from home, round came Craig to tell me what to do.  This included painstaking advice on the right chair – he got one company to send a trial – sent it back because it was over £1,000 – then found Matt who works at SitSmart.  He came round, measured up, asked me what I wanted, and I have ended up with a superb chair, in colour I like (blue) and Sitsmart are going to offer a special rate if you mention this website of £136.  01892-510202  www.sitsmart.co.uk

Oncolink is an American website, written in sensible language with a wealth of information about cancer.  Sadly, their postings about side effects are somewhat dated, but still accurate – and they mention the research done in Dundee into side effects, which have been brushed under the carpet in Britain.  www.oncolink.com

OOFFOO Is a website with sensible postings, and where you can buy natural products such as the Eco-ver range.  These are detergents, washing up liquid, etc. that won’t send your skin into orbit.  Oh – and it is also an exchange for getting rid of unwanted stuff.   https://www.naturalcollection.com/natcolnew/account/mktPlaceAdvertEntry.aspx

PAC (positive free counselling service) 01373-455255

Parabens I was concerned about Parabens, so contacted the British Association of Dermatology.  They put me on to The Cosmetic Toiletry and Perfumery Association, who can tell you far more about these and other ingredients added to our skincare.  ‘Chinese Whispers’ have damned many additives, and I constantly received emails saying this product – or that – gives you cancer.  Luckily we have stringent tests and regulatory authorities to protect us most of the time, but it is well to be aware of what is in your products.

In today’s climate of litigation, big internationally known companies would be very foolish to put anything in a product that might get them sued, or that could be challenged in court.  But what worries me is that relatively sensible people use ‘no added X  or Y, as a mantra, not realising that even Vitamin C can have its downside.  I have used skincare containing parabens for years, so have many, many other people.  And as one research chemist said at the launch of a product, “sometimes the blurb lists so many ingredients products DON’T contain, I wonder what is left”.  More information on www.thefactsabout.co.uk

There is also www.ctpa.org.uk – This is a site put out by the Cosmetic industry, and designed more for professionals, but again with lots of info on parabens and an answer to just about every scare story re cosmetics and skincare. Of course, they are speaking for the industry,  BUT – if products were are bad as people claim, there would be law suits flying around the globe, and the companies would be out of business. Today, no reputable company is going to allow any product to be sold without rigorous testing. Also, if you hoard expensive skincare like a miser (as I do) you will find that products that don’t contain preservatives go off more quickly.

However, many people are, quite rightly, concerned that there is another side to the picture, particularly as the CTPA is obviously going to give their member’s side.  Other sites that differ are : www.ourstolenfuture.org which has evolved from the book “Our Stolen Future” by Theo Colburn and Pete Myers. There is also the American site www.breastcancerfund.org/evidence from which the 2008 publication “The State of the Evidence” can be downloaded. The Journal ‘Basic & Clinical Pharmacology & Toxicology’ dedicated an entire publication to ‘Prenatal Programming and Toxicity’ in Feb 2008 (Vol 102, No 2). Other eminent scientists to write papers on the possibly harmful chemicals in our environment/workplace/homes/toiletries and to call for the Precautionary Principal to do adopted include David Gee and Richard Clapp, to name but two.

Paul D’Auria Cancer Support Centre The oldest cancer support centre in Britain, with a lively programme of interesting events.  The only organisation  I know where the AGM is standing room room only – probably because they usually have very good eats!   Woburn House, 155 Falcon Road, London SW11 2PD (near Clapham Junction) 020 7924 3924  http://www.pauldauriacentre.org.uk

 

Peterborough Breast Cancer Support Group are a very go-ahead team – join up with them and they have a lovely welcoming attitude.  You may be swept up in a pink limousine for Fashion Show, or take part in lots of other activities.  They have an extremely sensible and easy-to-read brochure about After Treatment – go to  http://www.peterboroughbreastcancersupportgroup.co.uk/aftertreatment.htm

Pinkladies.org.gg are based in Guernsey, and get up to all sorts of fun things!  They have a very useful local Contacts list.

Prepare To Live - P2L – is a very positive Australian website, aimed at younger people.  Watch the video of the Grim Reaper (complete with realistic and very sharp-looking scythe) being chased away by the young chemo patient.  www.preparetolive.com

Playing Politics The Daily Telegraph likened it to “people power”, describing how the NHS is having to climb down with what they described as their “illegal” action, denying us the chance to top up our treatment privately.

However, whilst petty officials cling on to power, we are still going to have to fight for our rights. Recently I was told “we can’t supply what you want. If we do, it will set a precedent for other disabled people”.

So I contacted John Bowis. He is MEP (Member of the European Parliament) for my Euro-constituency, ex-member of World Health Organisation, and Conservative spokesman on health at the European Parliament. Told him about my problems, and within a month, thanks to him, it was all sorted.

So if you have problems, and your MP can’t/won’t help, or just ignores your letters, contact

1) Your MEP

2) or John Bowis johnbowis@aol.com who is Conservative spokesman on health at the EU

We may complain about Brussels, but the Brussels Parliament has tremendous power over our everyday lives – make use of it.

Physicians’ Guide to Clinique Products : this booklet lists ingredients in Clinique products and is invaluable for nurses and doctors who need more info on what’s in product. 01207-271209

Polio - you may have had this as a child, and totally forgotten it. But if you are having an operation it is vitally important to inform your anaethetist – and to make sure they have read Dr. Spencer’s paper which can be supplied through the Polio Fellowship. My anaethestist totally disregarded the mention on my admission form, and as a consequence it took me about two months to recover from the anaesthetic. When I was faced with a seven-hour operation shortly afterwards at the Royal Brompton Hospital, my surgeon Mr. Mario Petrou, together with Dr. Hunter, took this on board, consulted with my polio doctor, asked me inumerable questions, and read Dr. Spencer’s paper. Result -I sailed through the op. without a single problem. More information from www.britishpolio.org . 0800 018 0586.

Prevention The Genesis Appeal is the only UK charity dedicated entirely to the prevention of breast cancer.  Currently, one in ten women is expected to develop breast cancer.  The aim of The Genesis Appeal is to create a future without breast cancer, by making 1 in 10, none in 10.

The Genesis Appeal has helped to fund the Genesis Breast Cancer Prevention Centre, which is Europe’s first ever, purpose built centre of its kind. The £14 million state-of-the-art project – based in Manchester – brings together internationally recognised medical experts and houses pioneering work into diagnosis, education and research into the prevention and treatment of breast cancer. http://www.genesisuk.org/images/custom/PressPack.pdf

Private Treatment . Friends might tell you that you will be lonely in a private room on your own. Don’t believe it. Today you are rushed through surgery, and by the time you are waking up and feeling ‘I fancy something to eat’, the doctor comes in and says “you can go home now”. Chance would be a fine thing – but you won’t have a moment to feel lonely! To find a selection of private hospitals; www.privatehealthcare.co.uk .

Prostate Cancer hhttp://www.prostate-cancer.org.uk/info/publications_toolkit.asp

Sheffield If you live in the City you probably already know the consortium of 28 GP practices that have banded together.  Full marks to them – they have details of what they are currently researching, an on-line survey asking what patients want from an out-of-hours service (they are actually consulting US!) and there is loads of useful info.  www/sheffieldhealth.co.uk

Talking Cancer is a website where patients and carers share their experiences of cancer and offer each other support.  It seems to be read by Australian nurses (with expert knowledge) as well as the general public.

There are a range of discussion forums covering general cancer topics, specific cancers, and support for carers. The forums provide the opportunity to connect with others online, 24 hours a day. You can read the forums freely. In order to participate in the discussions you need to register with Talking Cancer, which you can do for free, by completing the Registration Form.  www.talkingcancer.org

Survivorship At last!  The NHS realises that they SHOULD do something to help us after we leave hospital.  Macmillan and they are now involved in an a Consultation exercise on Living With and After Cancer.  More in on http://www.macmillan.org.uk/Get_Support/Living_with_or_beyond_cancer or  www.improvement.nhs.uk

and newsletter on http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/DH_088879

The Facts About ….. This website belongs to the Cosmetic, Toiletry and Perfumery Association.  Yes, there will be lots of people who throw up hands in horror – and millions of us who use their member products every day are quite happy to do so, and will welcome the sensible, factual advice on this site about all sorts of ‘new’ words – and what they mean.   In defence of this industry, if one millionth of the things they are accused of by pressure groups came true, there wouldn’t be any cosmetics sold.   www.thefactsabout.co.uk

www.wahanda.com is a website giving details of spas across the UK.  Some of them are mentioned on this website, some not, but if you need massage, reflexology or a facial, this site should show you the nearest salon.

THERAPIES

General Council  for Massage Therapy http://www.gcmt.org.uk

Foundation for Integrated Health http://www.fih.org.uk for  more general information including the link to the newly formed Complementary and Natural Healthcare Council (probably up and running by 2009).  Individual therapists will be able to be registered on it, providing they belong to one of the recognised professional organisations which took part in its setting up. This is voluntary regulation designed to safeguard the public.

Treatment Abroad.
Over 75,000 of us went abroad for treatment last year, and if you want to find out more the company  www.treatmentabroad.net has useful information.

John Bowis is Conservative spokesman on health in the European Parliament.  Very helpful and useful MEP. jbowis@europarl.eu.int

Europa Donna – European Coalition of Breast Cancer Services  http://www.europadonna.org

Also see under France, Germany etc.

Trials What makes my blood boil is the way that the medical profession decries skincare companies, yet conveniently ‘forgets’ what happened with drugs. Remember the trials that were carried out on a new drug Tegenero, at Northwick Park Hospital? The six men who took part were labelled The Elephant Men, because of the horrendous effects of this drug – and some only just survived. At a NHS quango meeting to discuss clinical trials, I mentioned I thought we should make some reference to the way the trials were carried out, and how this must never be allowed to happen again. Looks of shock and horror around the table, and my comment was never minuted.

So think about products, ask friends, and make up your own mind.

UNDERWEAR AND LINGERIE

Eloise Lingerie is one the of the UK’s leading suppliers of post mastectomy wear including lingerie, swimwear and prostheses. They supply post mastectomy wear including lingerie, swimwear and prostheses.  Set up by a nurse in 1994 in Bury St Edmunds in Suffolk, they recently opened a showroom and fitting rooms in South Wimbledon in London, where women can come for a personal fitting for lingerie or prostheses.
 

USA

American Society Cancer www.cancer.org

Association of Cancer Online Resources www.acor.org

DANA FARBER CANCER CENTER This American cancer instiiture is acknowledged to be one of the most important cancer centres in the world, and its website is incredibly informative.  Much of the information in Cancer in the News comes via the incredibly helpful contacts at this center.  www.dana-farber.org

Their page for international patients includes contat information for both adult and pediatric:  http://www.dana-farber.org/pat/becoming/international/default.html

They also have a Spanish-language site with an overview of services : http://espanol.dana-farber.org/

Dr. Susan Love is a doctor, expert in breast cancer and has an excellent website with sensible, proven information. On the site is a link to latest press releases and articles, mostly American, but that is no bad thing as they are serious about their treatment. Whilst I was being treated this was the site I turned to as being most accurate and informative. www.susanlovemd.com

www.healthcareindustrytoday.com .

“We have a dedicated team of professional fitters who are all highly trained in lingerie and prostheses fitting, and have plenty experience fitting women after various forms of breast surgery. Our fittings are by appointment only – so please call 0845 22 55 080 to make an appointment or to speak to one of our fitting advisors who can help with any queries regarding our collection .
We have an exciting new collection for 2009 which includes beautiful lingerie sets, camisoles, swimsuits, tankinis and bikinis with matching sarongs and tunic tops. We also have a new range of hats and other accessories for women who have had chemotherapy. We are working closely with a leading designer of luxurious fashion lingerie to produce an exclusive collection just for Eloise.
Watch this space!  As every so often they have a Warehouse Sale! Plenty of bargains (some up to 50% off) to be had with our discontinued ranges – www.eloise.co.uk
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.Institute for Patient-Centered Design is a 501(c)(3) organization.  www.patientcentereddesign.org

They say “Our mission is to contribute to the quality of healthcare delivery through patient-centered design advocacy, education and research.  There are three main service areas:
To provide a voice for patients seeking a more   responsive built environment in a healthcare setting
Provide information to healthcare providers regarding the patient’s expectations of a healthcare facility    
 Provide information and resources to the  healthcare design community addressing the specific needs of the patients for whom they design.
 

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