Using the web for information

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Get on the Web

Increasingly fellow patients are opening up their lap tops to find answers to medical problems.  Once, you looked at websites with suspicion.  Today, most of those sites promising ‘miracle cures’ have been outed – and, provided you check carefully, information is of a very high standard.

Social media is playing an increasingly important role in cancer survivorship, according to Oncology Nurse Advisor Magazine.

They have kindly given me permission to quote from their latest issue, and say

” Any number of message boards, forums, chat rooms, blogs, and Facebook pages are now devoted to cancer survivors. Cancer organizations use Web pages and other Internet tools for disseminating information to patients as well as oncology professionals. Many of these sites provide their own message boards and other forums that survivors can use to communicate with one other, and here is the magazine’s  selection of some of the more established resources”.

These sites are mostly American;  no bad thing, as in the States they treat us a intelligent humans, rather than “you are ONLY a patient” as I was told in UK.  And the NHS still can’t get its head round the fact that we often know more than doctors.  When I complained that the NHS’s National Cancer Survivors Initiative website (www.ncsi.org.uk)it was boring and only half finished, I was told it wasn’t for the likes of us, but “for doctors”.

CANCER SURVIVORS NETWORK

The American Cancer Society sponsors the Cancer Survivors Network (CSN), an online “community of cancer survivors, families, and friends.” The Web site states, “Our lives have been affected by cancer in ways only those of us who have ‘been there’ can truly understand.” Founded in 1996, this Internet community may be the gold standard of social media for cancer survivors since it has so many built-in options. People register for the free membership with a valid e-mail address in order to access all areas of the CSN Web site. Members are able to

  • Find other members and communicate with them using the CSN private and secure internal e-mail service
  • Access chat rooms and post to discussion boards
    — There are more than 25 discussion boards for specific types of cancer, and other boards as diverse as Caregivers, Gay Men Talk About Cancer, Emotional Support, Humor, Lesbians Talk About Cancer, Long-Term Effects of Treatment, Military Cancer Survivors, and Senior Survivors
  • Create their own My CSN Space where they can tell their stories, upload photos and audio files, create blog entries, contribute poems, recommend resources, and more
  • Get notified each time they receive new CSN e-mail or new content is added to an area to which they have subscribed
  • Create their own personal support community of other CSN members
  • Receive a free monthly newsletter from CSN

Of course, CSN members can also link to the American Cancer Society Web site for information about cancer, community resources, support programs, locating clinical trials, treatment decision tools, and many more topics.

ONCOLINK

OncoLink, the Internet-based cancer resource of the University of Pennsylvania’s Abramson Cancer Center, has won many awards since it was founded in 1994 with a mission “to help cancer patients, families, health care professionals, and the general public get accurate cancer-related information at no charge.” The site features numerous buttons and hypertext links that ensure ease of navigation through its pages of information on multiple levels. OncoLink is updated daily with news about specific types of cancer, treatments, and advances in cancer research. Among its many links for survivors, OncoLink lists such resources as the Long Term Survivors online group, National LGBT Cancer Network, Young Survival Coalition, Living Beyond Breast Cancer, and the National Coalition for Cancer Survivorship. One of the more popular features of OncoLink is Ask the Experts, where readers can pose questions to a team of specialists. The information on OncoLink is comprehensive; one expert is a veterinary oncologist who answers questions about cancer in animals on the OncoLink Veterinary Oncology Menu.

Some of you may have signed up for the Oncolink programme  via Macmillan.  Sadly this didn’t give access to all that was offered, and seems to have faded away.

TOP US CANCER HOSPITALS

Most of these have excellent information for survivors:

  1. Memorial Sloan – Kettering Cancer Center, New York
  2. University of Texas, M. D. Anderson Cancer Center, Houston
  3. Johns Hopkins Hospital, Baltimore
  4. Dana – Farber Cancer Institute, Boston
  5. Mayo Clinic, Rochester, Minn.
  6. Duke University Medical Center, Durham, N.C.
  7. University of Chicago Hospitals
  8. UCLA Medical Center, Los Angeles
  9. University of Michigan Medical Center, Ann Arbor
  10. University of Pittsburgh Medical Center
  11. University of Washington Medical Center, Seattle
  12. Massachusetts General Hospital, Boston
  13. H. Lee Moffitt Cancer Center and Research Institute, Tampa
  14. Cleveland Clinic
  15. Fox Chase Cancer Center, Philadelphia
  16. University of California, San Francisco Medical Center
  17. Stanford Hospital and Clinics, Stanford, Calif.
  18. University Hospitals of Cleveland
  19. Barnes – Jewish Hospital/Washington University, St. Louis
  20. Vanderbilt University Medical Center, Nashville

USEFUL WEBSITES

If you haven’t told your children, most authorities say you must.  The American Cancer Society’s website has some sensible information about this http://a676.g.akamaitech.net/f/676/773/60m/images.delivery.net/cm50content/19439/24775/page1.html

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