|THE CANBERRA ONE-STOP CANCER WEB-SHOP|
Dedicated to helping cancer patients and carers in the ACT and NSW Southern Area health region locate reliable web resources of interest to them. A link to a website or e-mail address does not necessarily mean endorsement*. Please advise me of any broken links or additional resources. Thank you - Denis Strangman.
|Advisors: Dr Craig Freeman, BSc (Hons) (Adel), PhD (Adel) (Fellow, Cancer and Vascular Biology Group, JCSMR, Canberra). Dr Peter McCullagh, MD (Melb), DPhil (Oxford), MRCP (Former Snr. Scientist JCSMR, Canberra). Mr Russell McGowan (Ten year BMT survivor, consumer representative, member of National Radiation Oncology Inquiry). Dr Linda L. Reaby, OAM RN PhD (Former Head of Nursing, School of Health Science, University of Canberra). Dr Desmond Yip, MB BS, FRACP (Medical Oncologist, Associate Professor, Canberra Clinical School). Advisors include medical practitioners, specialists, educationalists, researchers and cancer survivors who support the concept of the website but are not necessarily involved in selecting or recommending links. However, each advisor has a unilateral right of veto to any link/organisation which they might regard as dubious.|
Over 15,000 visitors. We welcome your feedback to make the website even more relevant and useful. E-mail: firstname.lastname@example.org
May 2007: New Guidelines, claim form and instructions, for the
Interstate Patient Travel Assistance Scheme (IPTAS) are available on
11 January 2007: A new link to hospital breast cancer services available in Canberra.
11 August 2006: Surviving Cancer in Rural and Regional Australia. Symposiun via satellite: Ainslie Football Club, 8.30 a.m. arrival, 9 a.m. start, 12.30 p.m. finish. See brochure here.
24 July 2006 - A Cancer Plan for the ACT is being drafted and will be available for public comment. Watch this space.
9 March 2006 - The ACT Government Health First website now has a Email a Nurse section.
23 June 2005 - Senate Committee Inquiry into Cancer Services. Submissions, transcripts, report, here.
|A cautionary note: As
a general rule it is not wise to rely on communication with a Doctor
via e-mail, unless you are certain that he/she reads their e-mail
regularly and will respond. Some medical staff are computer-aware,
others are too busy or are Internet novices. Some medical instiutions
ban all but the most senior staff from access to the Web and will only
provide e-mail access to a few personnel. Just because you have
discovered the Internet, it doesn't mean that everyone else is also
present and active on the Internet. However, some times you will hit
I once had a specialised medical query and on the off chance sent an e-mail to one of the world's leading neurosurgeons in NY - a person who was the head of a research institute and author or co-author of dozens of peer-reviewed journal articles - and within fifteen minutes received a reply. On some of the cancer e-mail discussion lists (see section below) you will often find altrusitic computer-literate Doctors who will answer basic questions of fact but they will be careful to avoid any professional interference in your treatment.
Tip: If you do believe that you are receiving the 'run-around' from your treating staff try sending a fax message to the Doctor's rooms outlining your questions and concerns and giving a phone number where you can be contacted. A fax often ends up as a piece of paper which is difficult to throw in the rubbish bin. We are still in a transitional electronic society where a piece of paper is more likely to produce a response, than an ephemeral e-mail or a message left on a telephone answering machine.
Take a photo-tour -
Click on the blue-framed buttons below to be taken to a photo-story or information about the subject. Please note that the institutions housing these services are undergoing constant refurbishment and may have changed their appearance substantially. For example, there is a completely new radiation oncology facility at Canberra Hospital.
Zita Mary Clinic
Canberra Breast Centre
NCPH Oncology Rooms
Independent Living Centre
TCH Radiation Oncology
Cancer Resources Centre
Resources Centre Launch
ACT Eden Monaro Cancer Support Group
Queanbeyan Palliative Care Service
ACT Prostate Cancer Support Group
Local Hospitals -
The Canberra Hospital The TCH Internet website has been revised recently. There are webpages for the Cancer Services which link to information about: Oncology Clinics (including the outreach clinics at Bega, Eurobodalla and Goulburn) | Cancer Resources Centre | Research | Recent publications | Clinical Trials | Quality Assurance | Links. Here is a link to an unofficial tour of the Oncology ward (14A, before refurbishment).
This is a link to one couple's unofficial impressions of the radiation oncology experience.
Here is a link to an unofficial photo-story about the process of blood analysis at TCH.
Calvary Health Care ACT Basic info. Includes webpages for the public and private components and the Hospice This is an unofficial webpage showing the facilities at the Zita Mary Oncology Clinic. This is a link to the Hospital's webpage outlining the services provided at the Clinic.
Calvary John James Memorial Hospital
Healthscope (Formerly NCPH). Here is a link to an unofficial photo-story about the Oncology Specialist Rooms located on the 2nd Floor.
The Southern Area Health Service (SAHS) "extends from Crookwell in the north to the Victorian border in the south, from Young and the Snowy River in the west and from Batemans Bay along the coastal strip to Victoria." It includes such areas as Queanbeyan, Goulburn and Bega. There is a useful webpage of listings for Hospitals and Community Health Centres covered by the service. Oncologists from the Canberra Hospital conduct outpatient clinics in several centres (see above).
Local health institution sub-units -
ACT Division of General Practice - The Division's Newsletter can be downloaded in pdf format. Contact addresses are given. Interestingly, there is a nominated "Palliative Care Support" person for each of the main geographical areas of Canberra and Queanbeyan.
Centre for Cancer and Blood Disorders, Sydney Children’s Hospital - Canberra Hospital Clinic.
Canberra Breast Centre - Inside Dr Buckingham's (breast surgeon) consulting rooms.
The Interstate Patient Travel Assistance Scheme (ACT Health):IPTAS administrator, Community Health Intake, GPO Box 825 CANBERRA CITY ACT 2601 Tel: (02) 6205 3299 Fax: (02) 6205 2611 Email: IPTAS@act.gov.au
Organisations - local - cancer and cancer-related
The Cancer Council ACT The website encourages visitors to e-mail, make a phone call or to visit the Council's premises at Fairbairn where there is an information service, including a library of over 1000 books, videos and tapes.There is a links page which lists several useful organisations.
ACT Brain Tumour Network. Susan Pitt 62470632.
ACT Eden Monaro Cancer Support Group 21 Cooma Street, Queanbeyan, NSW 2620. P.O. Box 1351 Queanbeyan, NSW, 2620. Phone: 02 6297 1261, Fax: 02 6297 1878. E-mail: email@example.com Office hours 8.30 a.m. - 4.30 p.m. Mon-Frid. Website: http://www.actemcsg.org.au/ Queanbeyan based financial and emotional support group for cancer patients and their families in the Eden- Monaro and ACT region of South Eastern NSW.
Bosom Buddies is "An ACT organisation for women with breast cancer" and has a range of useful information on its website, including a profile of the local Breast Care nurse who works with Drs Davis, Tait and Buckingham. It also has a comprehensive webpage of links, both in Australia and internationally.
Dragons Abreast (ACT & Region) is a group of breast cancer survivors and supporters who train regularly on Lake Burley Griffin throughout the year. They are spirited, fun-loving women who enjoy great esprit de corps by getting fit and raising awareness. Contact Jan Skorich.
Can Teen - ACT and Southern Inland (NSW) Division (Basic contact info).
Camp Quality - "We are committed to bringing hope and happiness to the lives of children with cancer, their families, and communities, through ongoing quality recreational and educational programs." This is a link to ACT contact information and activities.
The ACT Cancer Registry - "The cancer registry is the agency established under the Public Health Act to receive notifications of cancer in the ACT. The Department of Health administers the registry. All information sent to the ACT Cancer Registry is confidential, is held under tight security and is protected by the Public Health Act."
Consumers - There is a HCCA-supported Cancer Voices ACT Group which meets regularly and is part of the national Cancer Voices Australia. (Contact HCCA: firstname.lastname@example.org ) Input from cancer patients and carers is welcomed. Cancer Voices NSW "Cancer Voices NSW is a peak advocacy organisation providing a unified voice for all people affected by cancer in New South Wales." Cancer Voices Australia brings together the State and Territory cancer voices organisations.
NSW & ACT Hereditary Cancer Registers - Hosted by the NSW Cancer Council. Contains useful links and information on these hereditary cancers: FAP (Familial Adenomatous Polyposis), HNPCC (Hereditary Non-Polyposis Colorectal Cancer), Peutz-Jeghers Syndrome, Juvenile polyposis, Other Polyposis syndromes (i.e. Hyperplastic, Cowden's Syndrome, Mixed Polyposis).
Leukemia Foundation Support Services - There is a coordinator for the ACT and surrounds with an office at 1 Walton St Isaacs ACT 2607, PO Box 1703, Woden ACT 2606, tel 02 6268 9954 or Freecall 1800 620 420. They support people living with blood cancers like leukaemia, lymphoma, myeloma and related blood disorders (myelodysplastic syndromes, aplastic anaemia, myeloproliferative disorders and amyloidosis).
Canberra melanoma unit - Dr Peter Barry, Calvary Clinic, Bruce ACT 2617. Tel: 6253 4122 Email: email@example.com.See ABC Stateline story involving sports person Steve Larkham.
Prostate cancer - no local website but Graham Nicholls has offered to respond to e-mail enquiries. This is the text of a brochure about the group. Other contact details for the ACT Prostate Cancer Support Group (PCSG) are available by searching for the ACT group here. Link to the transcript of a discussion on the ABC's 7.30 Report about the PSA test for prostate cancer.
Peter Garas's website for his journey with Oesophageal Cancer.
National Ovarian Cancer Network - the ACT contact is Jane Harris.
Lung support - Esta Fitton (62887072) and Cecelia Kent (62318766) organise a local lung support group which may be of use to people with lung cancer. At this stage there does not appear to be any ACT lung cancer-specific support group but the Australian Lung Foundation will be launching a national patient support network in March 2004. Download its announcement made in November 2003 - HTML or PDF.
YWCA ENCORE program: "The ENCORE programme is for women who have experienced breast cancer surgery at any time in their lives. It is a structured programme of gentle exercises on land and in a hydrotherapy pool. It aims to improve flexibility and mobility after surgery in a small supportive friendly group environment. The programme is conducted nationally through the YWCA of Australia. In the ACT the programme is coordinated by the YWCA of Canberra. We offer 4 ENCORE programmes a year. Each group runs for 8 weeks and generally has 10-12 women in each group. It is free of charge to participants.We have pamphlets and an information package to send out to interested women." Please contact firstname.lastname@example.org or the national office freecall on 1800 305 150 or www.encore.net.au
Organisations - local - general
Health First - This is a government-sponsored health information website which includes a 24 hr telephone service (6207 7777) and an "e-mail a nurse" facility (requiring a sign-on). At first log-in the server will identify if you are using an appropriate browser and will seek geographical information.
Carers Association of the ACT.
Council on the Ageing (COTA) - website undergoing reconstruction but some current material available.
Health Care Consumers Association, Pearce.
Independent Living Centre, Weston, ACT - A government agency which displays and gives advice about equipment of use to people with disabilities.
Capital Pathology - Capital Pathology is part of Sonic Healthcare. Its local headquarters are at Deakin and it has collection centres around Canberra and the Southern NSW region. Its website is fairly comprehensive and while there is a password-protected secure area for its clients, members of the public can access webpages relating to the staff (in the company newsletter for Doctors) and download the Company Handbook (pdf 1.6 MB). There is also a useful collection of pathology weblinks and brief biographies of the employed pathologists.
Dietitians - ACT members in public practice who are members of the Dietitians Association of Australia.
Organisations and resources - national -
|A comprehensive gateway website is Ed Everest's "Guide to the World's and Australia's best cancer websites" (from the point of view of those with a cancer and their supporters). Usual disclaimers but Ed has spent hundreds of hours searching out his links and it is well worth a visit.|
Brain Tumour Alliance Austrealia (BTAA) - the only national brain tumour organisation for the patient, caregiver and family. Freecall number: 1800 857 221
Breast Cancer Network Australia A promotional and lobby group launched in October 1998. They organise the Field of Women display and train women through their Science & Advocacy course, to become effective members of breast-cancer related committees. ACT representatives for BCNA are Elspeth Humphries, and Anna Wellings Booth.
National Breast Cancer Centre Intended as a one-stop resource about breast cancer in Australia. See its link to hospital breast cancer services avaialble in Canberra - part of a national directory of hospital breast cancer services.
BreastNet - the website of the New South Wales Breast Cancer Institute - a good site for breast cancer information and support in Australia.
BreastScreen Australia - the Federal Government's free breast screening program for women over 40, and specifically targeting women aged 50-69 years.
Carcinoid Tumour Forum Australia - "About 75% of carcinoids arise in the gastrointestinal tract, particularly the small intestine. Another 24% occur in the lung and the remaining 1% occur everywhere else." Dr James Yao.
The Cancer Council Australia Brings together the state and territory cancer organisations.The 2000 Annual Report can be downloaded and seven issues of "Cancer Forum" which is intended for health professionals. Unfortunately the index for each issue is only readable when the PDF download process has commenced. The November 2002 issue, for example, covers 211 pages and the contents include a forum on lung cancer and a discussion of radiation therapy. There is a link to the NHMRC website where you can download several clinical practice guidelines prepared by the Australian Cancer Network for the prevention, diagnosis and treatment of cancer patients. The ACN's newsletter can be downloaded but it is 2.2 MB. There is a useful section "Cancer in the News" which provides on-line access to recent media items about cancer. There is a webpage of external links which is preceded by this warning "There is a huge volume of cancer information on the Internet, some of which may be outdated, misleading or inaccurate." There are links to lists of medical specialists in a small number of fields of relevance to cancer patients.
Australian Kidney Cancer On-line Support (AKCOS) - an Australian internet-based support organisation for kidney cancer patients and their loved ones.
Leukemia Foundation of Australia - Describes its website as "an extensive information and support resource for patients with leukaemia, lymphoma, myeloma and related blood diseases". It has an on-line e-mail news subscription facility. On-line copies of the Foundation's newsletter "The Carer" are available.
The Clinical Practice Guidelines (315 pages) for the Prevention, Diagnosis and Management of Lung Cancer can be downloaded in HTML or PDF format here
Adelaide Melanoma Unit (a unit of the Royal Adelaide Hospital) - information about diagnosis and treatment of melanoma within Australia.
Prostate Cancer website (Lions Australia) - for prostate cancer information and support relevant to Australia. Includes a comprehensive webpage of links and the Australian Prostate Navigator Site Map This is a link to the Mr PHIP (Prostate Health Improvement program) of the South Australian Health Commission, which contains links to useful on-line information about: interpreting the PSA test, monitoring, hormonal therapy, and sexual function, etc. The material can be viewed on-line or downloaded as a pdf file. This is a link to a website apparently initiated by urologist Dr Phillip Stricker (Sydney) which contains items of information relevant to prostate cancer. This is a link to the transcript of an item on the ABC's 7.30 Report about the PSA test for prostate cancer. Andrology Australia (The Australian Centre of Excellence in Male Reproductive Health) - a website established with funding from the Commonwealth Government - includes information on testicular cancer, prostate disease, male infertility, androgen deficiency and impotence.
National Ovarian Cancer Network. (OvCa Australia). This is a very well presented website with links to other sites.
The Gynaecological Cancer Research Centre is associated with the Royal Women's Hospital in Melbourne. The Links-information-support section is quite comprehensive, with an emphasis on ovarian, breast, and cervical cancer. GAIN stands for the Australian-based Gynaecological Awareness Information Network which includes gynaecological cancers within its framework of dealing with "gynaecological health, diseases and associated illnesses". The July 2002 Newsletter is available on-line. The Gynaecological Cancer Society, based in Queensland, has a number of booklets and leaflets about six forms of gynaecologic cancer which can be downloaded in pdf format. The collection includes an on-line webpage about Methotrexate.
The Royal Australasian College of Physicians (RACP) website has provision for public and member access. Webpages which might be of interest for a cancer patient or their carer include: Links to Australasian Medical Colleges; Australasian Chapter of Palliative Medicine; links to Australian and New Zealand hospitals with websites; links to specialist groups such as the Medical Oncology Group of Australia Inc, a list (updated 7 Nov 2002) of Medical Oncologists (four listed for the ACT), access to the eight-page September 2002 Newsletter of the Group (pdf), and a link to the Medical Oncology Trainees' website which contains an e-mail contact list for some trainees (see the cautionary note above regarding not relying on e-mail for contact with a Doctor). As at 05.03.03 there are 158 oncologists with an Australian address who are members of the American Society of Clinical Oncology (ASCO). To list them simply enter the word "Australia" in the country section of the Find an Oncologist search facility.
The Royal Australian and New Zealand College of Radiologists has provision for public and member access. Publicly available webpages of interest include the Breast Imaging Reference Group, and the 75 page submission "National Strategic Plan for Radiation Oncology" (pdf 720 Kbs). Unfortunately, the Radiation Oncology quarterly statistics report is password-protected. Internet resources for medical radiation: A comprehensive resource developed by the University of South Australia Library, with links to websites dealing with: Breast cancer, Colon cancer, Lung cancer, Testicular and prostate cancer, Nuclear medicine, Ultrasound, Radiography, Radiotherapy / radiation therapy, Databases.
The website for the Royal Australia College of General Practitioners requires on-line registration which limits your accessibility. In any event, there is nothing of great interest available to the non-member.
The Peter MacCallum Cancer Institute in Melbourne has several on-line Patient Guides, dealing with the Familial Cancer Centre, information about Clinical Trials (from the Anti-Cancer Council of Victoria), Radiotherapy of different types of tumours, MRIs, and PET scans.
Breasthealthlink is a website associated with former A.C.T. MP Ms Ros Kelly who has experienced breast cancer. It has links to useful information, including material hosted by the National Breast Cancer Centre.
The Australian Pancreatic Web Contact Page - contains several links for those with an interest in pancreatic cancer.
This is a link to the Vital Essence project in South Australia which has produced an interactive program about lymphoedema on CD-Rom, DVD, and audio CD.
Look Good ... Feel Better program "is a free community service program dedicated to helping women undergoing treatment for cancer. The purpose of the program is to help women manage the appearance related side effects of chemotherapy and radiotherapy, thereby helping to restore their appearance and self image." In the ACT you can make enquiries about forthcoming courses with the Hospital social workers or nurses.
Children and cancer - The Sydney Children's Hospital has a useful website with separate webpages on 16 topics relevant to this subject e.g. What to tell your child, A Teenager's Perspective, A Grandparent's Perspective, and so on.
Ian Potter Foundation Centre of Cancer Genomics and Predictive Medicine - "The centre uses gene analysis to match patients with the best available anti-cancer drugs, allowing individualised treatment." (ABC News 4 Feb 2003.)
The Gawler Foundation - Self-help assistance.
Petrea King's Quest for Life Centre - Self-help assistance.
NHMRC Clinical Trials Centre - The CTC, which is based at the University of Sydney, either coordinates or acts as the secretariat for several cancer trials, including the Newcastle-based Australia-New Zealand Breast Cancer Trials Group and the Australasian Gastro-Intestinal Cancer Trials Group.
"Optimising Cancer Care in Australia - A consultative report prepared by the Clinical Oncological Society of Australia (COSA), The Cancer Council Australia (TCCA), and the National Cancer Control Initiative (NCCI).
A new website on ABC Health Matters, dealing with skin cancer. See also Cancer Council Victoria's Sun Smart program - includes detailed information about their skin cancer prevention programs and some information about diagnosis and treatment of skin cancers.
Corporate Angel Network of Australia arranges free air travel throughout Australia for cancer patients and carers. They have a set of guidelines for use of their service.
This is the website for the recently incorporated Lymphoma Support and Research Association Inc.
Organisations - international - cancer
Breastcancer.org - one of the world's best breast cancer websites for information and support. See also the UK Breast Cancer Care
CancerBACUP UK Cancer information service. There is an index of 56 booklets available on-line and more than 100 Factsheets.
National Cancer Institute (US Govt.) Contains a wealth of information, particularly at the information webpage including PDQs (Physician Data Query) files, in patient and physician versions, on treatment summaries for the major cancers.
American Cancer Society - Website contains a pop-up menu to access information on specific cancer types.
US Too A US-based educational and support group network for men with prostate cancer and their families. Contains an on-line subscription facility for a twice-weekly e-mail newsletter.
Cancerlinks.org is a large US-based resource of links to multi-language internet information about cancer which can be searched in various ways, including type of cancer.
The Cancerlinks webpage for information on pancreatic cancer.
CancerGuide. This website has been collated by Steve Dunn. It contains a wealth of information on research avenues, including Stephen Jay Gould's classic piece "The Median Isn't the Message". Steven Dunn writes in a preface to the Gould article: "It is the antidote both to those who say that, 'the statistics don't matter,' and to those who have the unfortunate habit of pronouncing death sentences on patients who face a difficult prognosis. Anyone who researches the medical literature will confront the statistics for their disease. Anyone who reads this will be armed with reason and with hope."
Cancer-Pain.Org has been developed by ACOR (see Discussion Lists section) and has a very useful section "Ask the experts" which is answered by a Doctor from the Beth Israel Medical Centre and incorporates a well-defined collection of answers to earlier questions.
Colorectal Cancer Learning Centre - USA. Links to videos, images, etc. Covers anal, colon, rectal.
Lung Cancer Support Community or LCSC - hosts the world's most active lung cancer forum.
MPIP (Melanoma Patients Information Page) - lots of information on melanoma and a very active forum.
Oesophageal cancer - Cathy's EC Cafe, a US-based information resource for those with Oesophageal cancer (spelt esophageal in the US).
Oncolink is a website of extensive on-line cancer resources maintained by the University of Pennsylvania Cancer Centre. It includes a section of reviews of useful books and videos and another section on books to avoid. Another helpful section is the Ask the Experts webpage.
BBC News has a website of general information about cancer, including comprehensive information on 13 different types. The site appears to have been constructed in 2000 but some of the links might still be current and useful.
Pancreatica org is a website dealing with pancreatic cancer, including a very useful section of pancreatic-specific and general cancer links and an on-line searchable database of clinical trials (which unfortunately does not identify any trials in Australia as at 26.10.02).
Cancer in pregnancy - a study by the Consortium of Cancer in Pregnancy Evidence (CCoPE) sponsored by the Motherisk organisation.
Cancer Help Org - A UK-based organisation. This is a link to its website map. It has links to a diversity of topics e.g healthy eating, specific cancers, clinical research, the development of Tamoxifen, etc.
A webpage of links to organisations that offer cancer information in a foreign language. (From the American Society of Clinical Oncology-sponsored People Living with Cancer website)
Government - local -
ACT Department of Health and Community Care.
References to cancer in the government's consultation draft for the Health Action Plan (15.08.02)
BreastScreen ACT - "BreastScreen ACT offers screening mammography service free to all women aged over 40 years in ACT and surrounding NSW. Regular mammography screening is recommended for women aged 50-69." This is a link to BreastScreen Australia.
Government - Commonwealth and States-
Commonwealth Department of Health and Ageing Including the HealthInsite website. At this webpage there is a list of specific health topics (cancer, breast cancer, prostate cancer, and skin cancer) with links to information. The cancer webpage contains links to a further seven resources, including one for cancer statistics which contains links to 99 reports and articles in that area. The National Health Priorities and Quality webpage for cancer lists eight "priority" areas involving - lung cancer, melanoma skin cancer, non-melanocytic skin cancer, cancer of the cervix, breast cancer, colorectal cancer, prostate cancer, and non-Hodgkins lymphoma. The publications page contains a link to the Priorities for Action in Cancer Control document which involves a download of 647 KB. There is a links page to the State Cancer Councils, some non-government organisations, international organisations, and various government agencies.
Australian Institute of Health and Welfare
National Health and Medical Research Council At this link there is a list of publications, some of which are available in summary or downloadable PDF format, and which deal with specific cancers e.g. breast cancer, familial aspects of cancer, colorectal cancer.
NSW Government cancer policy: The Labor Government in NSW in 2004 campaigned during the State election with a specific policy on cancer (111 Kbs pdf). It includes the expenditure of $205m over four years on new initiatives, the creation of a NSW Cancer Institute (now established), and the installation of two new linear accelerators at Campbellton and the replacement of one at Wollongong, among other Centres. The 64-page Discussion Paper dealing with future plans for cancer services in NSW and issued in April 2004 by the NSW Cancer Institute can be downloaded in pdf format.
Report of the Radiation Oncology Inquiry: A vision for radiotheraphy. Report available for download (180 pps pdf) at: http://www.health.gov.au/roi/index.htm Recommendation No 86: "By the end of 2002, a 'cancer information for patients' website to be set up (and linked to the Commonwealth's Health Insite website) with detailed information on radiotherapy, cancer treatment options, radiotherapy treatment facility locations and waiting times, and information or links to the Patient Accommodation and Transport Schemes in each State."
On-line research and resources -
searches the Internet for cancer information?
In May 2002 the UK Cancer BACUP organisation conducted a survey of those visiting its extensive website.
The main results are available here. From over 11,000 responses they discovered that: only half were from the UK; women outnumbered men almost 3:1; only 1 in 5 had been diagnosed with cancer; and twice as many were relatives and friends of cancer patients than patients themselves.
Another survey: "Use of the Internet by oncology patients: its effect on the doctor–patient relationship". EMJA article. Results of surveys in 1999 and 2001 in two Sydney hospitals . Overall, it was believed to have a beneficial effect.
And again: "The internet is changing the way people seek medical care and almost one in three of Australia's five million regular net users search for health information online." (Sydney Morning Herald, 12 December 2002.) This is based on the A C Nielsen 2nd Annual Australian eHealth Study, of which a 53 page summary is available here.
Australian Institute of Health and Welfare - interactive data cubes for cancer incidence 1983-2000.
PubMed (This is often the first resource utilised by non-medicos who want to identify the latest research and treatment options. It provides summaries of articles and links to full-text versions, where available. There are links to over 71,000 articles which mention 'cancer'.).
This is a link to a special international website for the US Journal of Clinical Oncology, which will facilitate fast browsing and downloads from Australia, among other countries. At this link there is a search facility which incorporates dozens of related journals.
Electronic Journals Service: article search (Tip: enter the subject, identify all available articles, then refine to "Full Text" i.e. those available for free on-line).
HighWire (Stanford University) Includes freely available articles in "Cancer Research", published by the AACR.
BioMed Central Requires a slightly tedious free registration process undertaken on-line.
Cochrane Collaboration Describes itself as consisting "of a regularly updated collection of evidence-based medicine databases". Free access is now available to Australians. See ABC News story here. It is recommended that non-professionals search via the Consumer Network. The Cochrane Health Summaries can provide useful information.
Here is a search facility for the On-Line Medical Dictionary, courtesy of CancerWEB (UK):
The MEDHUNT medical document finder search engine.
Australian Cancer Resources Index Part of an international internet index of 40,000 plus links which has general and State categories but none for the ACT.
(US) National Library of Medicine Gateway search engine. (Includes MEDLINE/PubMed).
This is the links page for the Sydney Cancer Centre, based at Royal Prince Alfred (RPA) Hospital.
The BC (British Columbia) Cancer Agency in Canada has a set of recommended and evaluated internet links, including a section on "Evaluating websites".
This is a link to a 10-page downloadable pdf document from the RPA website on "Nutrition and Cancer" by nutritionist Jane Reid. It discusses diet for the cancer patient and has helpful hints for the patient experiencing side effects of treatment such as dry mouth, diarrhoea, changes in taste, sore mouth or throat, etc.
Radiography: This is the hyperlinks webpage at the School of Medical Radiation Sciences at the University of Sydney.
Internet resources for medical radiation. A comprehensive resource developed by the University of South Australia Library, with links to websites dealing with: Breast cancer, Colon cancer, Lung cancer, Testicular and prostate cancer, Nuclear medicine, Ultrasound, Radiography, Radiotherapy / radiation therapy, Databases.
This is a link to a US-based website Lab Tests Online which contains drop-down menus explaining particular pathology tests and some cancers.
This is a comprehensive website developed by Memorial Sloan-Kettering Cancer Centre in the USA containing "evidence-based information on herbs, botanicals, vitamins and other supplements" primarily for oncologists and other health care professionals. It has a searchable database covering 142 items and identifies contraindications between common cancer treatment drugs and the supplements. This is a similar on-line (PDF) document of 43 sections - Alternative and Complementary/Integrative Nutritional Therapies in Cancer Prevention and Treatment - prepared by the H. Lee Moffit Cancer Centre in the USA. This is a comprehensive review of websites in this area "Assessing websites on complementary and alternative medicine for cancer".
Home Care Guide for Advanced Cancer (American College of Physicians) - is a downloadable book, with chapters about cancer pain, shortness of breath, etc.
Virtual Cancer Centre.com is "... an online resource for the Australian cancer community, developed to meet the information needs for people living with cancer through to those in the medical profession. An editorial board comprising of 70 specialists from oncology, haematology, palliative care, radiation oncology, nursing and surgery contributes to the site in terms of its content and news".
Clinical practice guidelines for the psychosocial care of adults with cancer is available in pdf. (246 pps, 800 + kbs.)
Brain Tumour Publication and Resources - Incorporates a patient web-diary, news items, and links to many on-line resources. Australian based.
Clinical Information Access Online - These are Internet links maintained by librarians at the WA Department of Health. The section for Oncology contains dozens of useful links. The webpage includes a search engine covering the details of links in all areas.
OMNI - is a searchable catalogue of "quality Internet resources in health and medicine" based at the University of Nottingham (UK).
Interactive Cancer Data (Australia) - is provided on-line by the Australian Institute of Health and Welfare and incorporates a program which allows one to search the data by age, year and type of cancer.
An ABC Health Matters Library website on skin cancer - deals with basal cell carcinoma, squamous cell carcinoma and melanoma.
This is a link to the site map for the website for the Rare Cancer Alliance. There are useful tips on researching with drop-down links to 70 sections of the website. The author has an adenoid cystic carcinoma.
ABC breast cancer fact file and links to stories and transcripts.
Local research -
Canberra Clinical School - Medical Oncology - Areas of research.
1996 survey of ACT cancer patients self-rated health - article summary - Dr Paul Craft - Journal of Clinical Oncology.
Australian Capital Territory and South Eastern New South Wales Breast Cancer Treatment Group - "The aim of the project is to collect and examine data on treatment and outcomes for women with breast cancer." (Basic contact info.)
Cancer and Vascular Biology Group at the John Curtin School of Medical Research (ANU) - group membership and their research.
A study to examine the patterns of medical and nursing practice in the care of dying patients. Research Centre for Nursing Practice, The Canberra Hospital. "Study findings showed a pattern of late implementation of end-of-life management plans and a lack of consistency within these plans. This suggested that patients were subjected to medical interventions and investigations up to the time of death. Implications for palliative care teams include the need to educate health care staff and to plan and implement policy regarding the management of dying patients in the acute care setting. Although the health care system in Australia has cultural differences when compared to the American context, this research suggests that the treatment imperative to prolong life is similar to that found in American-based studies." The study was based on the medical records of 100 oncological and haematological patients prior to August 1999.
Foot massage for cancer patients - "In a sample of 87 subjects, a 10-minute foot massage (5 minutes per foot) was found to have a significant immediate effect on the perceptions of pain, nausea, and relaxation when measured with a visual analog scale. The use of foot massage as a complementary method is recommended as a relatively simple nursing intervention for patients experiencing nausea or pain related to the cancer experience. Further research into its effectiveness in the management of these symptoms by the family at home is warranted." Cancer Nurs 2000 Jun;23(3):237-43, Foot massage. A nursing intervention to modify the distressing symptoms of pain and nausea in patients hospitalized with cancer. Grealish L, Lomasney A, Whiteman B. School of Nursing, Division of Science and Design, University of Canberra, Australia.
The development of the Canberra symptom scorecard: a tool to monitor the physical symptoms of patients with advanced tumours. BMC Cancer 20 2003, (pdf format) Margherita J Barresi, Bruce Shadbolt, Don Byrne, Robin Stuart-Harris. The twelve symptoms they eventually arrived at to include in the "Canberra Symptom Scorecard" are: Lack of energy, lack of appetite, pain, constipation, nausea, difficulty sleeping, vomiting, shortness of breath, dizziness, sore muscles, problems remembering things, coughing.
Discussion Lists and web-diaries -
This webpage will allow you to search through 58,000 plus Listserv e-mail discussion lists around the world for a group which might be relevant to your interests. When you click on the search function type in the word cancer and identify likely groups. When you see this strange eye symbol you can search the archives of a particular list to get the "feel" of the group You can also join the list via the archives page.
ACOR (Association of Cancer On-Line Resources) has, as its principal objective "... (to) provide information and support to cancer patients and those who care for them through the creation and maintenance of cancer-related Internet mailing lists and Web-based resources." It is a hive of activity and in the week prior to 31 Aug 2002 distributed over 1.8m e-mails via the discussion lists it hosts. Many of its groups are listed on this non-ACOR webpage which contains an overall listing of cancer and cancer-related e-mail groups and a link to a webpage which has a useful explanation of newsgroups - another form of on-line discussion.
Aussie breast cancer forum - A web-based discussion list "for those affected by breast cancer and for their family, friends, carers and loved ones".
OzBrain Tumour - A discussion list for brain tumour patients and their carers. [There are probably many free Australian-based e-mail discussion lists of interest to Australians who have been touched by cancer. If you know of any could you please advise me of the subscription information.]
The Gynaecological Cancer Society in Queensland hosts an e-mail discussion group which can be subscribed to on-line.
Information about 13 cancer-related discussion groups from the Directory of Scholarly and Professional E-Conferences.
This is a website with links to 25 on-line stories by "Cancer Warriors" who are battling against different forms of cancer. It was linked to from the website of ultramarathoner Phil Essam who is attempting to raise $10,000 for the Victorian Cancer Council by walking the equivalent of once around Australia. He anticipates it will take him three years, maybe four years.
Links to 25 cancer-specific on-line discussion groups sponsored by the US People Living with Cancer organisation. They cover: Aids-Related, Anal, Bladder, Brain, Breast, Cervical, Colon & Rectal, Esophageal, Head & Neck, Kidney, Leukemia, Liver, Lung, Lymphoma, Myeloma, Ovarian, Pancreatic, Prostate, Skin, Small Intestine, Soft Tissue & Bone, Stomach, Testicular, Thyroid, and Uterine cancers.
Books and resources -
A review of Ben Williams' new book "Surviving 'Terminal' Cancer".
Local contact people - ACT contacts indicated here with an e-mail address are prepared to assist you with searching the Internet for information in the listed areas of interest:
Breast cancer: Jan Skorich email@example.com Brain tumours: Denis Strangman firstname.lastname@example.org (see also http://www.geocities.com/oldparl/journey.htm ) Oesophageal cancer: Peter Garas email@example.com Pancreatic cancer: Annette Drage firstname.lastname@example.org Prostate cancer: Graham Nicholls email@example.com Lung cancer: Esta Fitton (62887072) and Cecelia Kent (62318766) run a general lung support group in the ACT from which people with lung cancer might obtain support.
* The following disclaimer is based on that appearing on the Sydney Cancer Clinic website and applies to this website: "The Canberra One-Stop Cancer Web-Shop provides the following links to you only as a convenience. Their appearance on this website does not constitute endorsement. The sites are not under my control and I am not responsible for the contents of a linked site or any link contained in a linked site. I am not responsible for any changes or updates to these sites. Any opinions, advice, statements, services, offers or other information or content expressed or made available by third parties via these links are those of the respective authors and not the maintainer of this website."
The information provided on this site is designed to support, not replace, the relationship that exists between a patient/site visitor and his/her existing physician. Confidentiality: Confidentiality of data relating to individual patients and visitors to a medical/health Web site, including their identity, is respected by this Web site. The Web site owner undertakes to honour or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site and mirror sites are located. Advertising: Commercial advertising is not accepted on this website.
Website last updated 27 June 2009. The website was first created in 2002 and is in need of substantial revision but there are probably sufficient active links still working to help the newcomer commence their enquiries. Please report broken links to firstname.lastname@example.org
© Denis Strangman 2002-2009. This website is funded entirely by the owner and receives no funding from commercial or other interests.
Number of visitors since 11Aug 2002