I found it a little difficult to decide where to go next with tackling our cancer resource list.  So far I have presented the two “mega-cancer” sites – the American Cancer Society and the National Institute of Cancer.  I thought I should diverge a bit to look at a different group of sites.  So I’ll start with breast cancer.  No surprisingly with over 30 sites, it is one of the largest site-specific categories.  Today we’ll review the sites of four different breast cancer organizations.  (photo – Deena Metzger)

Susan G. Komen for the Cure

Susan G. Komen for the Cure seems a good place to begin as it has become perhaps the most visible and vocal organizations dedicated to the fight against breast cancer.  It is clear from the home page that it is primarily an advocacy and fundraising group.  And with multi-shades of pink graphics the focus of the site cannot be mistaken.  Four buttons in the left header allow quick navigation depending on whether you identify yourself as a patient, friend of someone with breast cancer, someone wanting to donate or be an advocate, or someone who just wants to share their story.

Just under the header is a traditional menu with drop-down selections.  The first is entitled “Understanding Breast Cancer” with content that rivals that of ACS and NCI.  In fact the use of illustrations propels it beyond those two sites.  Besides the expected “Diagnosis,”  “Treatment,” “Clinical Trials,” subject areas, the menu will also lead you to an interesting section called “Getting Good Care”.  The “Resources” section is extensive but I was particularly impressed by the “The Questions to Ask the Doctor About Breast Cancer” series that includes 14 topic cards on a variety of breast cancer issues. Each card contains pertinent questions to discuss with your doctor regarding a specific breast cancer topic. You can download and print the cards and bring them with you to your next doctor’s appointment.

The “Get Involved” menu invites visitors to participate in a range of different programs.  It is nice to see a “Research and Grant” section displayed so prominently on the home page.  “ShopKomen.com” allows visitors to demonstrate their loyalty to the cause with a variety of fitness apparel and other gifts and accessories.  The home page is well-designed and balanced graphically, albeit a bit busy.  I almost ended the review without seeing the tiny link to “Message Boards” at the extreme top right of the page.  Clicking the link took me to a very vibrant and active discussion feature with seven general areas of discussion divided further into 25 different topics.

Komen is a major player among healthcare charities.  Their site reflects that level of commitment and professionalism as well as reinvestment of its fundraising successes. Susan G. Komen for the Cure

National Breast Cancer Foundation

The National Breast Cancer Foundation has a more limited mission than Komen, dictated perhaps by its more modest profile in the cancer fundraising community.  The home page design is clearly feminine but with a less overwhelming pink theme.  Dr. Phil offers a video-message on early detection on the opening page.  In fact most contributions are focused on early detection programs including free mammograms.  The site does not have the same visual range of buttons and interactive menus.  Dropping down to the bottom (footer) of the page, you do discover an array of different sections including another on-line video stream, Beyond the Shock, a step-by-step guide to understanding breast cancer, a nice feature for a newly diagnosed visitor perhaps too overwhelmed to do the copious amounts of reading required at other sites.  There are nine different forums for discussion groups with thousands of threads.  The NBCF can be proud of the features offered on their site.  Breast Cancer | Breast Cancer Awareness | National Breast Cancer Foundation

Inflammatory Breast Cancer Research Foundation

A number of Being Cancer Network blogger identify themselves as suffering from inflammatory breast cancer or IBC.  It is fitting that there is an organization devoted to this unique variant.  The IBC Research Foundation does a good job of distinguishing this cancer which is not characterized by a lump in the breast.  The median age of diagnosis is lower than traditional breast cancer. The site is somewhat succinct and focused.  The menu is placed below the header.  Sections are generally one page and include Research, Awareness, Symptoms, and Diagnosed.  There is also a Pictures feature which involves clinical photographs of relevant material.  While not nearly as broad as other programs, there is no need here to spend funds in order to duplicate educational and support efforts that can be offered more effectively  by larger organizations.  The IBCRF has stated out their unique territory with appropriate economy.  The IBC Research Foundation

Sisters Network, Inc – A National African-American Breast Cancer Network

While the IBCRF above addresses the needs of a cancer subset, then Sisters Network provides a similar service to a sometimes disenfranchised minority population.  Even though the overall incidence of breast cancer is lower among black women than white, mortality rates are higher, 5-year survival rates lower, and incidence among woman under 40 is higher.  Further aggressive characteristics of breast cancer appear more often in black woman than in their white counterparts.  Sisters Network offers a number of outreach and assistance programs.  It has 44 local chapters in 22 states.  The site is modest though inclusive in what it needs to cover.  Graphics are attractive and the pink theme subdued.  Navigation is easy from the home page.  A social network is offered in increase the sense of support and sisterhood.  Sisters Network Inc. : A National African American Breast Cancer Survivorship Organization

The website of the National Cancer Institute (NCI) is high on the list of essential sources of reliable information.  NCI is one arm of the government-funded National Institutes of Health.  It is perhaps the second site that I would recommend a newly diagnosed cancer patient, family or friend consult.  Visit it after the shock and numbness have worn down a bit, after you have just a basic but well-round appreciation of your particular disease.  Then go to NCI.

It’s two greatest strengths are information pages on “Cancer Types” and then on “Clinical Trials”.  Choosing you cancer type, you will then get a pretty complete picture of your disease – statistics, diagnosis, and current best treatment.  You could spend quite a but of time mastering this information.  When you first arrive at the home page for your selected disease, you will notice under its treatment that you have two choices (1) patient and (2) professional.  Unless you have a medical background, tackle the patient info first.  Then, as you move through the treatment process and as you become more comfortable with the jargon, do take a look at the professional side.  There are no secrets here, just information on a different level and in a different context.

There is plenty of reading here, plenty of opportunity to go off on specific tangents.  The latest in disease modalities will each have its own section.  There will be information on genetics, risk factors and causes, and prevention strategies.  There will be detailed information on screening issues, including discussions of any current controversies.  Statistics aplenty as well as directions to go to for investigating current research.  You can use this page to guide you to doing further study into the professional literature on your disease.  Again all of this information will be oriented to the disease you are researching.  Finally clinical trials in the area of your selected cancer will be indicated.

The larger clinical trials section will be useful to many, especially those who are not or no longer responding to conventional therapies.  The NCI site is a good general place to start when looking into the whole issue of clinical trials.

The tone of the NCI is much more business-like than ACS.  There are less graphics.  And while there is plenty of information on coping with cancer, NCI is not in the business of providing support to patients in the same way that the American Cancer Society dictates.  Likewise there are no support programs offered through NCI.  But this is not their mission.

Your healthcare team will have occasion to utilize resources provided by NCI.  On the site you will find a good introduction to the issue of complimentary and alternate therapies.  Other approaches to the treatment of cancer are regularly investigated by government programs.  The information here should contain a balance as there is no agenda here top sell you anything.

The amount of information offered here is extensive, serving as an international resource.  The site is well thought out and easy to navigate.  The information presented is up-to-date, and is the result of research and debate by specialists in the cancer community. If it were a movie, I would give it 3 and a half stars.

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Looking up ...

Welcome to the new face of Being Cancer!  Well, it’s not as complete as I had planned – I am still struggling to place a photo image in the “header” or top section of every blog page.  But if you look closely at the same header, you will notice some changes.  The 2010 iteration of this website includes a shift in wording in the blog title.  Being Cancer has evolved into Being Cancer Network.  The word networking in the subtitle has been dropped, leaving People Transformed by Cancer.

Why the change?  I want this year’s focus to be more on our blogging community than on me.  I want to target the idea of cancer community more directly, emphasizing sharing ideas, posts, readership and enabling more discussion and dialogue.  My own health status remains solidly in remission – not so much to write about there.  Though I naturally cringe at saying out loud (bad luck?) that I am doing well as far as cancer goes, I do need to say it.  I am down to transplant clinic visits only every three months.  And, except for the occasional short hospitalization, I only have to deal with a persistent proclivity to viral infections.

I spent this weekend continuing in my naive struggle to learn programming languages – HTML, CSS, and PHP – in order to have more control over the look and functions of the website.  I did manage to successfully add some “widgets” to my left sidebar.  First is the colorful “Translate” widget that enables the Global Translator plugin to translate posts into a variety of languages.  It is always fun to view my familiar home page in Dutch, German, or Swedish.  I also expanded the “Categories” widget to include the number of posts in each category.

Next is a new box called Top Ten Commentators. This feature ranks folks who have offered comment based on the number of comments.  Hopefully it might encourage more participation.  The names on the list are hotlinks back to those blogs.  There is also a new countdown widget, displaying how long it has been since my stem cell transplant.  This might offer hope and optimism to those considering a transplant.  In the Askimet box, you can see how busy the spammers have been.  We are now at 31,000 legitimate visits.  I want to add a visit counter to the page in the future.  Finally, just for fun, you can see how many people are on the website at any given time.  This is supposed to include a world map page but I haven’t gotten it to work.

I have added some navigation features to the Cancer Resources page and hope to do the same with Book Club, Book List, and Reviews. The next thing I have planned is a different publishing schedule to emphasize the new community focus.  I plan five posts a week.  Monday will remain devoted to cancer books, either a review or the book club.  Tuesday and Thursday will feature Guest Posts.  As much as anything, this feature seems to strengthen the community.  I don’t want readers to miss out on great writing so I am doubling the number of weekly guest offerings.  Wednesday will center on a descriptive review of a selected cancer resource.  Friday will be either cancer news, a healthcare reform topic, or another cancer resource review.  I will continue to write reflections and articles occasionally.

Hopefully you have noticed the new Honor Roll page.  This is an Honor Roll for Excellence in Cancer Writing. Again this is designed to highlight the great writing and wisdom to be found in personal cancer blogs.  Cancer Blogs remains our most popular and unique offering. I will be adding to and expanding it, including descriptive modifiers on diagnosis, child survivors, inactivity, and other relevant bits.  I will be separating out Hodgkin’s bloggers as a distinct group from the other (non-Hodgkin) lymphoma survivors.

Please, please let me know about any new blogs you have found, any new cancer resources that you use, and any links that no longer work.  We are all in this together. We are the Being Cancer Network.

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Window View

It has long been part of my website plan to annotate the extensive “Cancer Resources” feature.  It is fine to have a list of links.  But such a list might be much more valuable if it contained an assessment of each site’s features, of its strengths and weaknesses.  With over 250 cancer websites listed the task has so far been daunting for me.  So I have decided to incorporate a regular post offering detailed cancer web site reviews.  A short synopsis can then be added to the site’s listing on the “Cancer Resources” page.

Cancer.org

If I were newly diagnosed, the first cancer site I would visit and bookmark is that of the American Cancer Society – www.cancer.org – a simple, easy-to-remember URL.  In reviewing cancer web sites I will be the using the following criteria: (1) accuracy and reliability of information; (2) range of features; (3) effectiveness in meeting intended purpose; (4) ease of navigating features and pages; and (5) appearance – presentation and graphics.

The American Cancer Society represents not only the motherload of information on cancers and the cancer experience, it is also the arbiter of many standards of cancer care in this country.  Their home page could probably be studied as an example of what web home pages should look like.  Numerous choices and menus are well integrated into pleasing illustrative photos.  The top left menu lets you choose an information path based on whether you are the patient or family member, the caregiver, a survivor, a healthcare professional, or just a general healthcare information seeker.  Clicking on any of these takes you to a page leading to information appropriate to your status.  For example, the “survivors” option leads you to “What happens after treatment,” “Coping with physical and emotional side effects,” “Be healthy after treatment,: and finally to “Get more information and support” including a link to their Cancer Survivors Network.

Next, in a traditional menu format, is a Find It Fast section.  From here you can quickly go to your genral area of interest be it clinical trials, statistics, smoking cessation, or treatment decision tools.  Here you will also find links to various ACS programs for breast cancer, Relay for Life, as well as products from the bookstore, gift shop or specialized hair loss and mastectomy items.  In the center of the page, with a yellow background, are two revolving features “In the News” and “In the Spotlight” currently featuring information on dealing with cancer pain.  Finally on the right side of the page are three boxes, each with its own drop-down menu, allowing you to navigate almost anywhere in this extensive site.  Sections include “Managing Your Cancer Experience,”  “Support Programs and Services” and “Resources for Healthy Living” the latter oriented to health maintenance and cancer prevention.  Other home page elements include access to various discussion boards (37 of these on different cancers, groups for caregivers, survivors, young survivors, etc) and locating the nearest ACS office.

The size of the organization, possibly the largest charity in the world devoted to cancer, allows ACS to offer something for nearly everyone.  This has the potential to make for  cumbersome site organization.  All pages are easy to navigate to and from, either by use of your “Back” button or the “Home” link that appears at the top of every page.  To make it even more easy, the site lets you register and have access to more tools and to the discussion groups.  You can customize your experience.  You can then be taken durectly to the area of the site of most interest to you.  You can receive relevant email alerts regarding new information particular to your situation.  You can also receive information on cancer events in your community.

Another useful feature is the “My Planner”.  In My Planner, you can maintain a personal calendar and to-do list to track medical visits and milestones, American Cancer Society activities, and other appointments. You can also keep track of your research by bookmarking important documents. And you can share ideas and questions through email groups.

Again, because of the size and aptitude of the organization, the site pages are constantly reviewed and updated to reflect the most up-to-date information.  All in all, Cancer.org is the best place to start at diagnosis and to return to periodically throughout your treatment course and beyond.  The site is extensive enough to offer you, your family, and your caregiver something of value at every stage of your journey.  American Cancer Society :: Information and Resources for Cancer: Breast, Colon, Prostate, Lung and Other Forms

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