Li-Fraumeni Syndrome, A Class of its Own.

LFS-Final-Project-Jennifer-Mallory-copy

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! www.coursera.org 

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! https://www.coursera.org/course/cancer

 


Sluggin’ it Out With Sarcoma: Brandi’s Story

Brandi was a young woman about to embark on the crazy journey into parenthood when she was sideswiped with a rare cancer diagnosis. Sarcoma. Only about 1% of all cancers are sarcomas. Sarcomas can be found in any connective tissue, bone, blood vessels, fat, muscles or nerves. Many sarcomas(like Brandi’s) present as a painless lump but as they grow they can push on nerves and cause pain. LFS increases the risk of growing a sarcoma and it’s important to pay attention to any lumps or bumps that grow or change and have them looked at by a physician. In Brandi’s case, having a sarcoma and breast cancer at an early age led to the recommendation that she be tested for LFS. She was gracious enough to sit down with us and tell us a little bit about Sluggin’ it out with Sarcoma. 


How did you find your sarcoma? 

In 2009, at the age of 29, I thought I had an ingrown hair on the my right thigh. I was around 5 months pregnant with my daughter Brooke and kept putting off going to the doctor because I thought it was nothing. 

How did you find out it was a sarcoma and not just an ingrown hair? 

I made an appointment to get the small bump lanced, thinking it was just an infection but when he cut into me, he pulled out a golf ball sized tumor. I got that dreadful call a week later and it was one of the most horrible things I ever had to hear. I had a Soft Tissue Sarcoma. 

What went through your mind when you heard soft tissue sarcoma?

I had never heard of sarcoma before I was told I had one. First thing that went through my mind was that I didn’t want to die. (Google can be the devil lol). I went to see an awesome Dr, his name is Dr Goodman, he made me feel I had nothing to worry about. He made me an appointment for my re-excision and thankfully everything came back clear. He had me doing CT scans and xrays. First year was every 3 months then every 6 months. 



A lot of sarcoma survivors have mixed feelings about their scars, how do you feel about yours?

At first I wouldn’t wear shorts, but now I am proud to show it off. I think I grew up a little and realized it could have been worse than just a scar. 

Do you have a family history of cancer? 

My father passed of lung cancer. We didn’t know about LFS then, so we never knew if he was positive. Genetics thinks it probably came from his side of the family, but we just don’t know. I have an uncle who had prostate cancer(cured) and is being treated for throat cancer this year. My grandfather had prostate cancer which was cured, he lived to be 86. My grandfather had brothers and sisters that passed from cancer, but I don’t know specifics. 

How did you find out about LFS? 

I didn’t know of LFS and never heard of it until my breast cancer diagnosis in 2014, my doc had me have genetic testing because of second cancer in so few years of each other and how young I was. 

Has being diagnosed with LFS changed how you view things? 

Yes, I look at everything differently for not only myself but my son, my younger sister, and her son. I always used to make fun of my sis for being a hypochondriac, now I’m the hypochondriac LOL. 
 
Don’t ever overlook the little things, I thought I had an ingrown hair on the side of my leg and kept putting off going to the Dr because I thought it was nothing.


How do you Live with LFS? 

I just accept the fact that it is what it is and I’m fortunate enough to have found out about having LFS so I can be screened and followed by doctors on a regular basis. 


Thank you so much Brandi for sharing your sarcoma experience with us! Do you want to share an experience or your story of Living LFS with others? Contact us at LivingLFS@gmail.com