Archive for the ‘Get Help’ Category
#tscsm hashtag TeSticular Cancer Social Media
The use of hashtags continues to grow across many platforms and can even be funny and entertaining at times. However, the use of hashtags for medical conditions, such as testicular cancer, has not been uniformly developed and this provides an opportunity for improvement.
In order to be useful, hashtags should be unique, identifiable and short. Unfortunately, on platforms such as Twitter #testicularcancer is just too many characters and the use of #balls or #nuts is too generic to provide much usefulness for someone searching for testicular cancer information. As a matter of fact, if you are looking for cancer information on Twitter a search for #cancer will result in a plethora of topics and you will end up reading more posts about astrology than you will about clinical or support topics related to cancer.
Earlier this year, realizing these deficiencies, Dr. Matthew Katz proposed a hashtag folksonomy for cancer communities. After some collaboration and refinement they developed a systematic approach for site-specific cancers, based off the #bcsm hashtag that has been used for several years for breast cancer.
We have been communicating with Dr. Katz over the last few months and fully support his ontological system, which is also being accepted by other major institutions such as ASCO, MD Anderson and the American Urological Association. We hope that you will join us in starting to use #tscsm when making posts related to testicular cancer. The hashtag comes from testicular cancer social media (#tscsm) and will allow individuals to quickly locate information about testicular cancer without having to wade through the plethora of other posts that are unrelated.
The cancer tag ontology is also summarized on Symplur and will allow organizations and patients to connect based on the unique tags.
Thanks Dr. Katz, et al. for your hard work to make cancer information more accessible and useful to patients, clinicians and organizations on social media platforms.
#tscsm for Now,
Clinical trials are the tools that are used to improve our ability to treat cancer.
Many people think of clinical trials as an all or nothing principle that dates back to the early days of placebo-controlled clinical trials. Before there were effective treatments for a disease they would conduct trials where patients were given a drug or a sugar pill to see if the drug performed.
In today’s age, it is no longer ethical to use placebo controlled trials, especially when we have proven treatments, so there really are no longer any of these sugar pills. Clinical trials are often used to compare new treatments to the best that are currently available. By comparing these promising new treatments we can help improve our current “gold standards.”
In order to find a clinical trial we used to have to rely on the knowledge of our treating physician. Then the National Institute of Health designed a clinical trial registry but this registry was designed more for the clinical trials to have a place for public posting and not really a place for patients to find trials to meet their needs.
Now we have CureLauncher, which was co-founded by two-time testicular cancer survivor David Fuehrer. CureLauncher has “translated” the clinical trials into an easier to understand format. They also use Relationship Managers to ensure that they are there for your first and that they are focusing on finding clinical trials that match your unique needs and goals. Instead of having to rely on which trial is at the large local hospital we now have access to CureLauncher and their list of All clinical trials.
[Note: You may not see Testicular Cancer in the condition selector on their home page but they DO have testicular cancer trials available so simply give them a call at (800) 488-6632]
Thanks for taking a closer look at clinical trials.
Can I Get Life Insurance After Testicular Cancer Diagnosis?
After being diagnosed with testicular cancer many of us assume that being able to secure life insurance is impossible. We fear that no one will insure us or that it will be too expensive. However, this is not necessarily the case.
The SAMFund just released a incredible new webinar titled The SAMFund: Life Insurance and Cancer Survivors (note that this link goes to a pre-webinar survey and then will redirect to the webinar for viewing). Take time to view this if you are looking for insurance.
Presenter Ted Mageau, from the Main Street Planing Group, details inside knowledge of the life insurance industry. He points out that brokers with multiple carries and experience with cancer survivors may be your bet. He gives simple explanations and a list things to do and not do.
If you need to obtain life insurance after a testicular cancer diagnosis then take the time to watch this webinar. Especially with early stage seminoma, insurance may be available right after treatments.
We all want to protect our families future and life insurance is not impossible to obtain.
Hear about the latest testicular cancer treatments and how to check for testicular cancer
This live-streaming webinar is presented Dr. Mark S. Litwin.
Dr. Litwin is the Chair of Urology at UCLA and Director of their Testicular Cancer Program.
Visit www.urology.ucla.edu at 1 p.m. PST, Thursday, February 7, 2013, to join the webinar and ask live questions.
Join the conversation on Twitter at @UCLAHealth with hashtag #UCLAMDChat to ask Dr. Litwin questions.
Click here to register for this event.
This is a great opportunity for testicular cancer fighters, survivors and caregivers to hear first-hand from Dr. Litwin and to be able to ask questions.
Hope You Enjoy It,
Being diagnosed with cancer is expensive and almost all of us could use some help with those expenses. That is why the Testicular Cancer Society partners with GiveForward, a company that provides free fundraising pages to help with those medical expenses and out-of-pocket costs.
When facing off against testicular cancer one thing that may come across your mind are the financial difficulties associated with the battle. Questions start to build up. Am I going to be able to work? How am I going to pay for treatments? Am I going to be able to pay my other bills? How can I get help?
Our first suggestion to help with the financial struggles is to set up a page on GiveForward. GiveForward provides free fundraising pages that empower friends and family to raise money for loved ones’ medical expenses. The website has helped thousands of families to raise millions of dollars for things like chemotherapy, organ transplant and travel expenses.
To give you more insight into GiveForward we asked friend and GiveForward Co-Founder Ethan Austin if he could share a few words with us about their services.
Mike asked me to write a post about why setting up a GiveForward fundraising page for a friend or for yourself is a good idea. Here are three good reasons!
Money: Each year cancer patients spend over $25 billion to pay for out-of-pocket costs like travel expenses and co-pays not covered by insurance. The reality is that no matter how wealthy a person is or how good his insurance plan is, everyone can always use a little extra money when facing cancer.
Hope: We hear all the time from users that as important as the financial support is, the words of encouragment from friends and family is sometimes even more important. [note, click on the “donors” tab in the link above to see the words of encouragement].
Empowerment: Friends and family want to help, but most of the time they feel helpless if they don’t live near the person battling cancer. By setting up a GiveForward page for a friend or for yourself you empower friends and family to actively participate in the recovery of someone they love.
Hope this helps! If you have any questions feel free to email me.
Keep in mind that GiveForward isn’t just for cancer fighters but rather for anyone that needs some help with fundraising. Many times people will set up an account at a local bank to accept donations but these banks don’t accept credit/debit card transactions and many people just won’t take the time to write a check and mail it. GiveForward not only accepts debit/credit card donations but also the link to your fundraising page can easily be sent via email or posted on websites.