Everything Changes - The Guide to Young Adult Cancer

Facebook and twitter (like a phone or radio) can be used as fluffy, brain draining diversions, or to have sophisticated conversation about issues like access to affordable care and clinical trials. So how do you use social networking to be an educated and effective cancer activist instead of a slacktivist?

Seductive social media campaigns entice us to mobilize our networks to vote for projects where the most popular cause receives money and/ or exposure. (Take the Pepsi Refresh campaign - they’re so brilliant for not buying Superbowl ads this year when they can rent our brains for free on facebook instead.)

The problem with these online campaigns is popularity does not equal value. The popularity of a project, a person, or organization has zero to do with their efficacy, necessity, skills, or smarts. Plus, cancer is about much more than contests, awareness campaigns and fundraising. In fact, most cancer issues that impact our lives are about science, industry, politics, prioritized evidence-based research, and policy. If you don’t understand these words and how they relate to cancer, you will not significantly impact the future of cancer prevention, outcomes, and quality of life measures.

I don’t have a degree in science or public policy. But I know what I’m talking about when I stand in a Senator’s office asking that Congress demand more funding from the National Cancer Institute for young adult research. And, I can write good letters to my newspaper asking that pharma not be allowed to hold a patent the BRCA gene. I’ve educated myself about these issues online, and facebook and twitter have played an increasing role. To make a serious impact as a cancer activist, consider these tips:

1. Multiply By Five.
Keep track: For each tweet or facebook message you post or comment on, spend five minutes reading a journal or news article about healthcare policy or scientific research. The topics and jargon may seem foreign, but the more you read the more you’ll understand. If you don’t have this much time to spend reading, then you’re spending too much time on twitter and facebook!

2. Retweet Only What You Read.
Retweet information only if you have read the entire article/post, have an opinion about it or can ask an intelligent question, know who wrote it and their motives, and think it’s valuable to others. You’ll have fewer tweets/updates going out which in turns elevates the quality, rather than quantity, of conversation in the cancer community.

3. Get Stingy With Your Time and Attention
I don’t waste my brain or clog my inbox by joining any old facebook group. Before supporting an organization ask: Is the staff or director spending more time on facebook and twitter than working on the backbone of their mission? Are they filling a niche high on the list of cancer priorities and goals? Are they willing to speak up on controversial issues if it benefits their constituents? Will they educate me? @bcaction @cancerandcareer are great orgs doing it right!

4. Nix Online Petitions
E-letter and online petitions hold very little weight with elected officials. If you get an online petition, research the cause and if you support it, call your representative and write a letter to the editor.

5. Old Fashioned News Feeds
I still subscribe to daily and weekly email updates from professional sources and journals. Why? Because the smartest, most effective people I know are not spending their time twittering or on facebook. They’re engaged in science and policy and write more than 140 characters about their discoveries.

How much time do you spend on facebook or twitter. Do they change your knowledge or feel like a brain drain? Any tips for making the most of social media?

For more tips about how to spend your cancer time online, read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

A few years ago, I had my doc ask for a second opinion from a second pathologist, who interpreted lab results differently than what the original lab report read.  This is a big deal when you are talking about cancer.  The words “second opinion” are used during the first weeks or months of cancer when we are setting up shop with our docs. But you can get a second opinion anytime you want (or anytime your insurance will cover it!)

Check out this short video. I was so drawn in, I felt like I was watching a full length documentary. I wanted to stay glued to the screen for an hour with a bucket of popcorn.

The gist is that Myriad, company in Salt Lake City, owns a patent on a few of your genes (BRCA1 and BRCA2) that show your likelihood of developing hereditary breast and ovarian cancer. What’s the big deal?  They are the only company that has the rights to do research, screening, or testing of these genes, as well as developing pharmaceuticals related to the genes.  You can’t get a second opinion from another lab to make sure the test is accurate or interpreted correctly. It also means they are the only game around so if you cannot afford 3,000 buck for their test you are SOL.

This is just wrong. Hats off to Breast Cancer Action for engaging the ACLU in a lawsuit to challenge the patent that the Federal Government gave to Myriad. I fully support their efforts and hope that they kick some ass.

Have you ever sought a second opinion beyond your initial diagnosis and choice in doctors? Have you done or would you do genetic testing? Would you want these tests performed by multiple labs to verify accuracy? What do you think of the ACLU’s suit?

Shannon and I are ditching our car for two months and seeing what life is like.  (Evil Chicago potholes caused $1,800 of damage to our car, and we don’t want to shell out the cash to fix it.)

In a way I’m glad - it is forcing me to actually do something that I often complain about: get serious about cancer and the environment.  Did you know that four major chemicals released by car engines are proven to cause cancer in animals and humans?

I’m not going to change the world or reduce young adult cancer incidence rates. In fact, I think it is dangerous to think that individual actions, like using CFL light bulbs or buying eco-crap, are going to solve the decline of our environment.  Nope, for that we need tougher regulations on car emissions, investment in public transit, and more walkable communities.

But until then, I am glad to be trying out a life that is just a tad bit less hipocritical…. how can I bitch about cancer and the environment while I’m driving my car everywhere?

Having no car has been an adjustment and sometimes frustrating.  But there are some big time benefits too: I get more exercise, meet more neighbors walking, and read more and see cute kids on the bus.  Plus we joined a non-profit car share so we have wheels for big errands.  This would not have worked if I still had treatment fatigue, and I might not like it come winter.  We’ll see…

How often do you drive? Do you ever equate daily activities of your life with carcinogenic output?  If you have had major illness, treatment, surgery, did it affect your driving habits? Have you ever used the American Cancer Society’s Road to Recovery program?