If and or when you or someone you love gets diagnosed with a disease you are going to have a lot of questions. And as mentioned in a previous blog, Doctors Aren’t Gods, it is inadvisable to blindly turn over your trust to a doctor. Even if you do, they may advise you about choices that you have, and the more and better informed you are, the better position you will be in to make a choice that is in line with your wishes.
If you google search things like cancer, heart disease or diabetes, you’ll get over 200 million responses in less than .3 seconds (assuming a good broadband/DSL internet connection). In about the same amount of time, I made a more specific request and searched for stage II lung cancer and received over 8 million results.
So, there is a lot of information out there. How do you organize and collate it? First, if diagnosed with cancer, read this. Next, you can start to organize information through social media. I’ll get to the usual suspects in a moment, but I want to mention a newer player first. Medivizor. Medivizor acts as your own personal e-Newsletter. You can sign up on their site for free, create a profile and input specific information about your age, gender, and diagnosis. Medivizor will then organize a listing of relevant articles for you to read and email you every time something new comes in to them.
As a newer site, it doesn’t have every type of cancer listed, but it is worth a look. In addition to cancer, it also covers heart disease and diabetes. So if you know someone dealing with those illnesses, please pass on the link to them if you think it appropriate. While Medivizor is promising, by no means is it all-inclusive at this point. I would still consider using other sources as well.
In addition to questions, you may have financial needs that only add to the stress of your illness. Another site you may not have heard is gofundme.com. This is a crowdfunding website where you can set up a site for free and raise money to help pay for your care. You can see a video demo of how it works by clicking here.
If you are already using sites like Twitter and Facebook and have hundred or thousands of “friends”, you may want to set up a new page just for your diagnosis. This way when you sign in, your news feed or listing of information, will only be related to your diagnosis, and you will not have to sort through the minutia of all of your “friend’s” postings.
When adding your diagnosis/ social media pages, I would suggest looking up U.S. News rankings for top cancer hospitals in the country. Remember, they have an overall list for cancer in general, and specific lists for different types of cancer. When you find the best for what you have been diagnosed with, check out their websites if they have one, and consider “following” or “liking” them on their social media pages. Many tend to send out (“tweet”) potentially helpful links to articles.
To help get you started, below are some websites, with their twitter names that could be of possible interest. Some I have been to, others I just looked up for this blog. So do your own research, you may know or find other cancer, social media, or crowdfunding sites that are better for you. In some cases the websites might have great information for you but the twitter pages, not so much. That is why I provided the links for both.
If you do not see your type of cancer represented below you can do your own internet search or call places like the American Cancer Society or MD Anderson and ask for recommendations.
No need to join hundreds of sites… But if you can find some specific to your type of cancer, i.e., lung or breast, and some for cancer in general, i.e., MD Anderson or John Hopkins, and check it periodically, you may find it helpful and time-saving.
It could help you stay informed on the latest information regarding:
- What to expect pre and post treatment
- Financial and emotional support
- Clinical trials
- Palliative care, and more
- American Cancer Soc – @AmericanCancer
- Annie Appleseed – @AnnieAppleseed (info. on natural cancer strategies)
- CancerCare – @CancerCare (good for resources, help and support)
- Cancer.net – @cancerdotnet
- Cancer News Network – @cancer_network
- Cancer Survivors @Cancer_Buzz
- CancerSupportCm – @CancerSupportCm
- CDC Cancer @CDC_Cancer (Center for Disease Control/ Cancer)
- The Cholangiocarcinoma Foundation – @curecc (bile duct cancer)
- City of Hope – @cityofhope
- Coping with Cancer – @COPING_cancer (magazine)
- CTCA – @CancerCenter (Cancer Treatment Centers of America)
- CURE Magazine – @cure_magazine
- ECAA – @ECAware (Esophageal cancer)
- JohnsHopkinsMedicine – @HopkinsMedicine
- Life with Cancer® – @LifewithCancer
- LIVESTRONG – @livestrong
- LLSusa – @LLSusa (Leukemia and Lymphoma society)
- Lung Cancer Alliance – @LCAorg
- Lung Cancer Network – @LungCAN
- Mayo Clinic – @MayoClinic
- MD Anderson – @MDAndersonNews (Top ranked cancer clinic)
- Natl LGBT Cancer Net – @cancerLGBT
- Navigating Cancer – @NavCancer
- NCI Prevention – @NCIprevention (National Cancer Institute)
- NIH – @NIH (National Institute of Health)
- PanCAN® @PanCAN (Pancreatic cancer)
- Prevent Cancer – @preventcancer
- Prostate Cancer Fdn – @PCFnews
- SkinCancerFoundation – @SkinCancerOrg
- Sloan Kettering – @sloan_kettering
- Stand Up To Cancer – @SU2C
- St. Jude Children’s Research Hospital@StJude
- StopColonCancerNow – @StopColonCancer
- Stupid Cancer – @StupidCancer (for young adults)
- Susan G. Komen – @SusanGKomen (Breast cancer)
- The Gerson Institute – @GersonInstitute (diet based)
- UCLA Fights Cancer @UCLAJCCC
- Voices Brain Cancer – @VABC
This website doesn’t seem to have a twitter account but for those interested in researching alternative/ complementary natural cures I thought I would add it to the list. http://www.healingcancernaturally.com/
This blog does not include links of information on or for message boards. However this can be another valuable resource – communicating with people who have been through what you are going through. Something to consider, however, you may want to independently verify any information you come across here.
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