A web of information

Information post diagnosis of breast cancer is a key that can unlock many doors; the first door is to a beautiful house with many different rooms, some not all to your taste, but you could easily live there, in that house there is a peaceful acceptance that you will get eventually, or the key can unlock the door to a “haunted mansion”, with scary corners and sudden surprises (dodgy plumbing, and hidden flaws), and you can walk these rooms filled with mirages of the worst scenarios, with a heightened heartbeat, sense of unease, and continual fear. Picking the correct house is a matter of getting to the lay of land prior to opening the door, (this would be second opinions, and “phone a friend” for where to go as similarly you would look at more than one house before moving in.) This time out to check out your enforced move should be encouraged, as breast cancer is a relatively slow growing cancer, so taking a week or 2 to gather information is essential. Breast cancer is not the flu and I tell all patients, don’t rush in for “emergency” breast cancer surgery as there is no such thing!

Today, if diagnosed with breast cancer, one is faced with a variety of different information channels. Besides the “free” advice and information that is offered by friends, people are often drawn to the internet for their information. While there is a lot of useful information on the internet, there are also sites that offer dangerous advice.

The internet is a minefield of information. One of the most accurate descriptions I’ve ever heard is, “There is so much good but finding it is the hard part”. Admittedly I myself have, in the comfort of my own home, committed the mistake of creating a TV diagnosis. Greatly exaggerating the facts and fining the most unusual weird and terrifying reason for a simple stomach ache, which ended up being the result of the common and usual virus.

The websites that I use are generally www.cancer.org, www.asco.org, and the Netcare website also offers a lot of good advice. There is no top website, as there is no international agreement on what is the top website. Research your questions, but use reputable websites and be careful of personal experiences as no two patients are alike. Remember to always speak to your team of doctors, about the information you have found and if it would be suited for you.

The internet is wonderful at opening doors to a world of knowledge and it is important that you research sensibly around your treatment. Many large cancer organisations and centres around the world have excellent and trustworthy information for patients.

Some of these are: 

Local

International

  • National Cancer Institute (USA)www.cancer.gov
  • Susan G Komen for the Cure (USA) www.komen.org
  • Breakthrough Breast Cancer (UK) www.breakthrough.org.uk
  • Macmillan Cancer Care (UK) www.macmillan.co.uk
  • American Cancer Society (USA) www.cancer.org
  • MD Anderson Oncology
  • Dana Farber young women www.beyondtheshock.com uses animated shows to go through many of the important areas surrounding breast cancer. It provides a starting point for you to start exploring information around your diagnosis at your own pace.

Pharmaceutical websites often offer advice about new drugs and trials and can be used in conjunction with discussions with your oncology team.

There is also a lot of advice and treatments offered on the internet that are not based on good scientific evidence, and many chatsites by well-meaning people who have sought other methods of treating cancer. When you read all sources of information, it is important to read critically and not to trust everything you read or hear of. Discuss any concerns or reading you have done with your doctor as they can often help you discern the true and trustworthy from the fringe.

Remember anyone or any site that offers a 100% cure, or amazing results with treatments that have no side effects, anything that sounds to good to be true, usually is not true.

Non medical sites that can be interpreted with care:

Breast Cancer Answers (Univ. of Wisconsin) www.biostat.wisc.edu/bca/bca.html. A collection of Frequently Asked Questions, News Releases, Breast Cancer Resources, and a place to ask simple questions (complicated ones will tell you to go ask your oncologist).

Medical Housecall on the Net (Applied Medical Informatics, Inc.)  Although a demo of something that the company sells, the Web is pretty complete and comprehensive. It is a concise overview of breast cancer issues, and a good starting point for the person first trying to understand what has happened to her/him with a breast cancer diagnosis.

Breast Cancer for Patients (part of Pathology Simplified)  Simple, clear overview of breast cancer, including photos and diagrams (not only of cancer, but of the machines you will encounter!).

If you want slightly more medical detail

Breast Cancer Compendium (from MicroWeb) This site can be used as a search engine to find articles from popular magazines; the NCI/PDQ statements; links to Medline and other searches. It is organized in a very easy search way.

Cancer Guide: Steve Dunn’s Cancer Information Page

This site offers evaluations, descriptions, and advice of what you will find out on the Web and is extremely comprehensive. You can go through a few levels of pages to get to a Breast Cancer FAQ (Frequently Asked Questions).

University of Pennsylvania’s OncoLink www.oncolink.upenn.edu/

Go to the first page to get to “Diseases-Oriented Menus,” and from clicking there you get to “Breast Cancer.”

National Cancer Institute Publications, incl. “PDQs” – Physician Statements – Breast Cancer

This is the official National Cancer Institute’s CancerNet.

This is a full list, nicely formatted, of available NCI cancer publications, many in full text. Very easy-to-use site.

This document, often updated monthly, is the official advice of NCI about diagnosis and treatment of Breast Cancer.

There is also a Patient Statement, but the one for physicians is more complete and has footnotes to specific studies. Therapeutically, it leans toward being “quasi-leading-edge,” rather than leading-edge, perhaps being several months behind what the most advanced specialists are in fact doing in their own medical practices, but it is an excellent source for a lot of information.

Health A-Z www.HealthAtoZ.com/

Although not cancer-specific, this site has lots of well-organized links. For example, “Journals and Periodicals” at this site can take you to a list that provides links to such items as the Journal of Clinical Oncology, Journal of the National Cancer Institute, the ACS’s Cancer, and so on.

Clinical Practice Guidelines

www.asco.org/prof/pp/html/f_gs.htm

American Society of Clinical Oncology “Clinical Practice Guidelines.” These are useful to use as a baseline for comparison with a doctor’s recommendations. Doctors should be at least up-to-date on these.

In some instances, of course, guidelines such as these lag behind the latest, best practices but they are definitely a place to start.

This is an attempt to provide a list of some of the best sites with information on breast cancer. It is designed largely to help others do research regarding treatment options for breast cancer, with some other items on art, advocacy, etc.as well.

Get support

You do not have to survive cancer alone. In every part of the country there are networks of breast cancer survivors who are ready to support you from diagnosis onward. Some of these organisations are:

Bosom Buddies: www.bosombuddies.org.za

Breast Health Foundation: www.mybreast.org.za

Reach for Recovery: www.reach4recovery.org.za

Look Good Feel Better: www.lgfb.co.za

People Living With Cancer: www.plwc.org.za

Many of these organisations hold meetings, for support and for gaining information about their disease. They also get involved in fundraising for breast cancer charities. Most organisations are committed to helping you fight your cancer and walking with you every step of the way.

You never stop being a breast cancer survivor, and in time you will be able to support others too.

Oh no…. more and more

Don’t get roped in by these online MD’s an important part of every diagnosis is the ‘physical’ which as the name implies require an actual doctor’s presence.

The Internet is a place for sensational stories in a public forum, and the ones you find most easily are always the weird and wonderful tales. Remember you are unique, your circumstances are unique and your story will be your own to write!

MEET THE EXPERT

Prof Carol-Ann Benn heads up breast cancer centres at Helen Joseph Hospital and Netcare Milpark Hospital. She lectures at Wits University and, in 2002, established the Breast Health Foundation.

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