Scanxiety Rescue

Living LFS means extra scans. Preventative scans. Screening Scans. Treatment Scans. Follow-up scans. Annual Scans. Quarterly scans. This is after an undue amount of time fighting (sorry ADVOCATING) to GET scans ordered or covered in the first place. Holy Scans Batman. My scanxiety is tingling.

With great scans, comes great scanxiety. Rationally you tell yourself there is nothing you can do. You tell yourself what will be, will be. You know that whatever is or is not lurking in your body will or will not be revealed by the scan. But it’s not that easy. The what ifs stack up around you. What if there IS something? What if the scan shows cancer? What if it doesn’t show anything- how do I ever know for sure it’s ok? Have no fear, there will be more scans next year.

I think scanxiety is a true mark of intelligent people who have dealt with more than their fair share of medical crisis. We are rational. We know that every second spent worrying is a second taken away from living. As humans we also like to prepare ourselves- it is plain and simple self-preservation. We somehow think if we prepare ourselves it will be easier than being blind sided. Yet those who have experienced both will probably tell you- any way you slice it – finding cancer super sucks.

So you, I’m telling you to step away from google. Don’t even think about Web MD and here’s why.

You are going to search two or three terms that will undoubtably lead you to an article or a paper or someone’s experience with cancer.  Or something inappropriate, depending on which body part you are searching, but the resulting condition listed is generally cancer. The word cancer will make your heart skip a beat and then you will feel the pressure in your chest, a little tingly tightening in your head that turns into throbbing. You then will spend an inordinate amount of time researching that cancer and treatment and life expectancy and you will be terrified and decide to either throw the computer down the stairs or search for other possibilities it could be. You will spend a lot of time convincing yourself it could be diabetes or angina or some really rare disease that isn’t cancer but is relatively treatable.

In the time you’ve done this, your scan is sitting in the inbox of a qualified professional who has about 14 other scans to read before he gets to yours. All those people that were in the waiting room- all have something or other they needed looked at. He or she appreciates the stress people feel waiting for scans, there are classes and conferences and seminars on the subject now. His or her job is to read the scan and to read each one to the best of his ability. Sometimes he or she will consult with another professional to make sure. Now MRI, CT and PET scans can show lumps, bumps and shadows. The professionals are trained to look at it and try to identify features that are typical of benign lesions common in the area or malignant lesions. Most can recognize these features in a glance. Some cases are more straightforward than others. They can give recommendations, but they cannot tell the absolute difference between benign and malignant by scans alone. Only a biopsy of the lesion can give that information.

They will read the scan and then make a report. The report then will be entered online if you are lucky enough to have that access, or unlucky enough because when you have access at home you will sit down and read it and probably see words that invariably strike more fear in your heart. Then you immediately open up a tab for google and start the cycle over. So I say again. Step away from the internet. Go do something you like to do. Hug your kid, draw a picture, hike a trail, just sit and breathe. So then when you get the scan results, either way you can say- I’m glad I did that instead of worrying.

Li-Fraumeni Syndrome, A Class of its Own.


A few months ago, I had the opportunity to take an online course entitled Introduction to the Science of Cancer offered by the Ohio State University through the online education app called Coursera. I was excited to see what the course material contained. As someone with a hereditary cancer syndrome, I feel like I know more than your average bear about cancer, but this was a good way to see where I stood.

I logged into the class and read through the syllabus. The class was a series of video lectures offered by various personnel at The James Cancer Hospital connected with Ohio State University Comprehensive Cancer Center. There were 5 modules, each with a different lecturer for the different focus. The Modules covered What is Cancer, Diagnosis of Cancer, Treatment of Cancer, Prevention of Cancer and Cancer Research. Each module was connected to a video that was about an hour in length. The best part, the course was absolutely FREE.

After each module, there was a quiz worth 10 points and you could take each quiz two times. I liked to take the quiz before watching the video to see what I knew going in and what I had to focus on. The nice part was I could work through the module at my convenience(in my pjs or while at my daughter’s soccer practice.) As long as you finish the quizzes by the class deadline, you get credit. Did I mention the course was FREE? Free education! Free information from one of the leading cancer centers in the US!

Along with the quizzes, each student was responsible for a final project. No fear- it was a creative project that had two options for me to choose from. You could design a project that explored how cancer impacted you, your family and community or you could create an artifact for cancer awareness for the community you live in. You had a lot of free reign with what you could do. You could write a poem, make a poster,sing a song-anything that appealed to you. I really liked this aspect of the course. Then after you complete the project, you get points for reviewing at least 5 peer projects.  This was fascinating and I learned a lot about how cancer is perceived and treated all over the world. I was so impressed at how far reaching this program was. Did I mention it was FREE?

Living with a hereditary cancer syndrome means we have some crazy stuff pop up at inopportune times. I know many friends who have had to postpone education due to cancer and treatment. This course offered the opportunity without the fear, you could do it at your own pace and if you didn’t finish, all you miss out on is a certificate. I would definitely recommend this course or any others that might interest you through Coursera- check it out. Knowledge is power! 

I am really thankful for everyone at the James who took the time to record the enlightening lectures about cancer for this course. It really was a good resource.

In case you were wondering- I did my project on LFS and Living LFS. I figured why not take the opportunity to educate about Li-Fraumeni Syndrome as well as tell about how it impacts families like ours. If you click on the slide above, it will take you through my project.

If you missed out on the fall class and are interested in enrolling, the course is  offered starting January 25, 2016!