Be Careful Out There

When you are diagnosed with lung cancer you become quite valuable. You are now able to tell a side of the story that unless you are living it you just cannot understand. Pharmaceutical companies want to know how to market their treatments. Your healthcare teams want to know how to better treat you and future patients. Researchers want to know where they need to study and what the people want. Even other cancer patients want to know what your story is. Often, you are asked to share your story in person, online, in an interview, and through blogging. The valuable data that you now have needs to make it to the correct people and not into the wrong hands.

Facebook safety

Let us start with Facebook. I joined about 2 dozen lung cancer-related Facebook groups when I was first diagnosed. Many of them were very valuable and I met a lot of people that helped me along the way. You want to make sure that you are not over-sharing your information such as personal medical details. It is important to share what you have been through since you have directly dealt with side effects or navigated the medical system. When I have started a new treatment, I asked my oncologist about side effects but then I go online and see who has actually lived them. I am still a part of only a few Facebook groups today.

I have found that there are people out there that target lung cancer patients and try to profit off of us. One of the ways that they do this is by selling lung cancer awareness merchandise. You will see this in many of the Facebook groups, someone will post a picture of a t-shirt or a mask and announce how they received this in the mail. Their hope is that someone comments on the post and asks where they received it from so that you in turn purchase the item. I feel this is taking advantage of those of us with lung cancer.

Know the story behind the statistics

The second thing that I would like to speak on is searching for lung cancer-related information online. When you are first diagnosed you want to try to stay away from Google and if you need to search for something cancer-related have a specific person in charge of doing so.

I find this is important because there are many statistics out there and when you are first diagnosed it is hard to decipher what is important and what is not. Many statistics are out of date and in the lung cancer world that is huge. We have had had many treatments developed even in the almost seven years that I have had lung cancer. I know when I was diagnosed the chance of me living five years post-diagnosis was around 13% and it has since increased. You want to make sure that you know the difference between a blog and a scientific piece of data.

Keeping yourself safe online is important even if you are not a cancer survivor. We are in an age where we can send and receive information in seconds. How we do this and what is sent can mean the difference in your safety.

Want to discuss more in a safe space?